tag:blogger.com,1999:blog-69943060523010409522024-03-13T07:53:53.971-04:00PH PlusA blog for patients living with PH & multiple illnesses. Whether you’re living with PH plus scleroderma, PH plus liver disease or PH plus another condition, you can read information and connect with people who understand.Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.comBlogger40125tag:blogger.com,1999:blog-6994306052301040952.post-15802366927371603672014-11-17T15:23:00.001-05:002014-11-17T15:23:52.622-05:00Raising Awareness By Walking With StrawsNovember is PH Awareness month! All around the country and the world, there have been events of all sorts to try to promote awareness of pulmonary hypertension, and to raise funds to go towards research and hopefully a cure one day. Here in Western NY, there was a first-ever fundraiser done by Emily, the daughter of a PH support group member that I run (his name is Scott), and the student athletic committee at the college she attends. It was a 6 minute walk marathon, which is just one of the many tests a PH patient usually does when seeing their PH specialist. It's a baseline test used to see how far a patient can walk in just 6 minutes. It can be done with or without oxygen, and a patient can stop if they need to during the walk, but the timer will still tick if they do.<br />
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The 6 minute walk marathon fundraiser required participants to use straws. Why straws? Well, trying to walk breathing only through a straw simulates exactly how a PH patient feels on a daily basis. The shortness of breath felt trying to breath through a straw while walking hopefully gives a person a sense of how a PH patient feels trying to get dressed, or walk up a flight of stairs, or down a short hallway. The walkers had a choice in straws: a short straw, a long one, or a skinny straw. Each had a different degree of difficulty, with the shortest straw being the easiest, and the skinny straw being the hardest.<br />
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All the participants registered to do the walk, totalling a little over 100 people. The huge majority of people were athletic students, including almost the entire baseball team! After a wonderful welcome and introduction as to the purpose of the PH walk, everyone went outside and began the marathon. The path of the 6 minute walk was around the student center, near the library, and back to the student center. There were PH facts along the entire path. There was a timer counting down the minutes, and paramedics on stand-by just in case breathing through a straw caused a medical issue for someone! Everyone did well, though, including myself and one other PH patient who had attended!</div>
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After the walk, everyone gathered for pizza and drinks, and a little more money was raised by selling tickets for several raffle and door prizes. Eventually I joined Emily on the stage, and thanked the crowd for coming and experiencing what it felt like to have PH, if only for a few minutes. The raffles were given away, and soon the crowd had thinned out. While the event was short and sweet, I hope that it served it's purpose, which was to raise awareness of this disease. I do know that at least the athletes at the school are aware of it now! Hopefully another walk in the future can be planned, and perhaps be a bit bigger and involve more of the community!</div>
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Side note: Emily and I, as well as a couple other athletes, were filmed for one of the local news stations a couple days before the walk. We each were asked questions about the walk, why we were doing it, etc. I did share some of what I go through living with PH. Three different segments were aired in the early morning hours the day before the fundraiser. I did learn the next day that a few people had written in about the segments, either concerned because they thought they might have PH, or they have had PH for a long time and didn't know there was a support group in the area. I have reached out to these people since, and I'm just glad that a brief amount of TV airtime at least helped a few people!! </div>
<br />Colleenhttp://www.blogger.com/profile/02619732913623023461noreply@blogger.com3tag:blogger.com,1999:blog-6994306052301040952.post-79204568758705095802014-11-08T06:00:00.000-05:002014-11-08T06:00:07.238-05:00PH Plus Awareness: Samantha-Anne's Story<div style="line-height: 11.6pt; margin-bottom: 4.5pt;">
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">This is a long post. If just
one person reads this, though, and it helps them to not have to wait 3 years to
be diagnosed with Pulmonary Hypertension, then it has been worth it.</span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">The first time I heard about
Pulmonary Hypertension was on August 18th during my first appointment with the
pulmonologist. It was included in a list of other things I hadn't heard of that
might be causing my illness (interstitial lung disease, cardiac asthma,
sarcoidosis and PH; I had heard of pulmonary embolism because that is what
killed my brother in 1990 at the age of 47.) I knew that all of these things
were serious, so I starting learning about them. I'm not sure why it took so
long for my doctor to send me to a "lung doctor" when my main
complaint for the past 2 years had been shortness of breath (SOB), but I was
glad to finally be there.</span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">PH seemed to fit with what
was going on with me. However, a lot of other diagnoses had fit before and I honestly
didn't want to be disappointed yet again when the doctor told me that I didn't
have x,y or z and that he didn't know why my life had changed so drastically
since November of 2011. After doing pulmonary function tests, an exam and
having me walk in the office while my oxygen saturation level was monitored, the
doctor said I would need to have a CT scan to rule out blood clots in my lungs.
That honestly was not scary to me because I've been checked for that so many
times due to my family history. He said that if there were no blood clots, then I would have to have a right and left heart catheterization procedure
to see if I had PH. I had a left heart cath a year ago so I wasn't nervous
about that, and since I had no idea what PH was, I didn't worry about it either.</span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">My pulmonary function tests
the year before showed that I have a mild restrictive process in my lungs but
no obstructive process, so no COPD (which my mom died of in 2000, so I was glad
that was ruled out.) I do have mild Alpha-1 Antitrypsin Deficiency, which can
affect the lungs, so I knew that lung problems could happen to me. The PFTs he
did on 8/18 showed that my lungs were not moving the oxygen in the air I
breathe back into my blood (that's poor diffusion capacity). Mine was about 1/3
of normal. An MRI had already shown that my pulmonary artery is slightly
enlarged, so I knew that something was going on and all signs were pointing to
PH.</span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">Because I really push to get
things scheduled quickly and stay on top of my care, I was able to get the CT
scans scheduled for 8/21, just 3 days after seeing the pulmonologist. The CT
scans showed some mild lung scarring that I already knew about and thankfully
no blood clots.</span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">During these weeks I was
dealing with a lot of body wide pain (unrelated to the PH) and swelling in my
feet, ankles and legs. They basically were just huge stumps, from my toes to my
stomach, with no delineation between the three. They hurt and the stinging in
my feet was unbearable at times. I was also having to keep an eye on my kidney
status because I have Stage 3 Chronic Kidney Disease. Thankfully, there are 5
stages and my disease is mild.</span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">Let me take a second here to
talk about the word "mild". I hate that word now. Everything I
had going on with me was "mild". Mild means that the doctors don't do
much for you and they basically wait until it's not "mild" anymore
before they get serious about talking to you or treating you. At least, that was
my experience. So even though "mild" is good, it sucks. My
cardiologist told me that my heart issues were "mild" and didn't need
to be treated and that I should see if the pulmonologist could help me figure
things out. That just didn't seem right to me. I started asking myself a lot of
questions and realized that I had a lot of questions for the doctors. My life
had changed drastically in the past 2 1/2 years and something was causing that.
There is no way I could go from being able to hike 2-4 hours at 7000-8000 feet
altitude to being SOB and having a racing heart just walking room to room in my
house.</span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">I started believing that PH
was the illness that was causing my problems so I made an appointment with the
PH Specialist in Denver. Neither my cardiologist nor my pulmonologist told me
to do that. I did it because I was tired of not knowing why my life had been
turned upside down and I wasn't going to wait on them to tell me what to do to
get better (since they hadn't done that anyway.)</span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">At the beginning of September, I went back and looked at the sleep study I had done the previous November. I
knew I had sleep apnea and was supposed to wear a CPAP, but it made me feel
claustrophobic and like I was suffocating so I didn't wear it. I was diagnosed
with obstructive sleep apnea in 2006. I got my first CPAP that same year. I had
never used my CPAP consistently in all that time. When asked by my doctors if I
used it, I told them how it made me feel and that I was not using it very often.
No one followed up, no one did any education, no one did any counseling and no
one referred me to a sleep disorders specialist. When I looked at the November
sleep study (that I had requested be done,) I noticed that my oxygen level was
<90% for >99% of the night with and without the CPAP. That didn't seem
right to me. I thought that oxygen levels were supposed to be above 90% all the
time. The pulmonologist had mentioned getting me compliant with the CPAP so I
thought I should look into that. I called the center where I had the study and
no one, to this day, has ever called me back. I just kind of figured that it must not be that big of a deal if no one called me back. I was very wrong about that. </span><br />
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">One of the most fortunate
things that happened to me was getting sick around September 7th. I ended up in
urgent care for bronchitis and an upper respiratory infection. They gave me
oxygen and a breathing treatment and sent me home with a ton of meds. I called
the pulmonologists office to let them know about my sudden illness. I spoke with Linda, the doctor's nurse, for 41 minutes on the phone. She was the first
person who seemed concerned about the results of the sleep study and that I was
so sick for so long without a diagnosis. She asked me to come into the office
that afternoon so she could see me. She did a very thorough exam and asked a
lot of questions. I left the office that day with
supplemental oxygen. I could tell right away that adequate oxygen intake is a
good thing. It felt so good to breathe. She took copies of my sleep study and
my other paperwork to discuss with the doctor before my appointment the
following week. Linda really cared, and her taking the time to evaluate me has
made all of the difference in the diagnosis of my illness. Just days later, I was
set up with 24/7 oxygen at home, including using it with my CPAP at night so I
could get adequate oxygenation. On 9/12, when I had my PFTs
done again, my diffusion capacity was 2/3 of normal. That was an improvement. My
lung function wasn't as good, but I had bronchitis and the URI so that kind of
made sense.</span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">So, at 54 years of age, I was
on supplemental oxygen 24/7 and taking diuretics to reduce the fluid overload
in my body (hypervolemia). I was feeling older than I am. </span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">On 9/18, one month after
first hearing about PH, I was in the cath lab getting my pulmonary artery
pressure looked at. The cardiologist told me that I had PH (the pressure in my
pulmonary artery was higher than it should be), that my body was overloaded
with fluid and that I probably have hypoventilation syndrome (I breathe too
shallow) due to being overweight. It was a bit overwhelming. The pulmonologist
confirmed the diagnosis on 10/6. The PH Specialist confirmed the diagnosis on
10/7. They both told me that I needed to treat my sleep apnea, continue using
oxygen 24/7 indefinitely, lose a significant amount of weight, consider moving
to a lower altitude (I live at 6,700 feet) and definitely not travel to
higher altitudes and keep my sodium intake to <2000mg/day and my fluid
intake to <1.5L/day to combat the fluid overload. That was VERY
overwhelming.</span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">Thankfully, I was seeing
a counselor to help me deal with being chronically ill even before I got the
diagnosis of PH. She has been wonderful and extremely helpful. I also was
dealing with the possibility of having lymphedema (causing the swelling in my
legs) and had to work through the process of getting that diagnosis ruled out.
I had to have a nuclear scan done where they inject the radioactive dye between
your toes! Thankfully, it sounds a lot worse than it is. No lymphedema, so that's one
less thing to worry about.</span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">I have had a lot of questions
for all of my doctors since being diagnosed with PH. There are 5 different groups
of PH. It looks like I am in groups 2 (PH due to heart issues) & 3 (PH due
to lung issues, which are sleep apnea and hypoventilation syndrome). Group 1
is the only type of PH that has specific medications to treat it. It is also
the most rare and dangerous type of PH. Every single patient's
experience with PH is different than every other patient's experience with PH.
There are similarities, but everyone has something unique to their illness. That
makes it difficult to treat PH. In my case, since my PH is due to underlying
conditions, those underlying conditions have to be treated to make the PH get
better. I have to treat my sleep apnea, my obesity, my fluid overload and my
oxygenation issues. I'm hoping that if I treat those things, that the PH will
get better and/or go away completely. I may have to deal with PH the rest of my
life. To what degree, I don't know.</span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">I have spent a lot of time on
the phone with the PH Specialist's nurse. I wasn't supposed to see him again
until April, but they want to follow up with me. So, I am going back up to Denver
next week. The difficulty with having PH due to other illnesses is that no one
is quite sure who is supposed to treat and follow up with the patient. It is a
heart disease <i>and</i> it is a lung disease. It is complicated. Thankfully, the
specialist is going to make sure that I get my questions answered and that I
understand my PH as best as I can.</span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">David and I are feeling
overwhelmed right now. We are considering moving to a lower altitude if it
would be the best thing to do. We still have so many questions. I am hoping
that my appointment with the specialist next week sorts a lot of this out. I am
looking at doing a Pulmonary Rehab Program 3x/week for 3 months to get me
active again. I have basically been sedentary for the last 3 years. I'm hoping
to get a portable oxygen concentrator (a machine that makes its own oxygen) so
I don't have to bring oxygen cylinders with me everywhere and have to
constantly be refilling them. I want to be mobile and get out again. I want to
understand what my flavor of PH means to me. What can I do to feel better? What
can I do, if anything, to halt/reverse/eliminate PH in my life?</span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">I am going to see the
ENT/Allergy doctor this afternoon to help with the constant nasal congestion I
have. That keeps me from wanting to wear my CPAP mask at night. Wearing oxygen
full time affects your nose and sinuses. What can I do to make sure I comply
with wearing oxygen 24/7? I am going to see the sleep disorders specialist
tomorrow. I know that being compliant with my CPAP, treating the sleep apnea
and reducing the amount of time that my oxygen level is below 91% is crucial. I
need to know if I do have the hypoventilation syndrome. I'm not sure if he
would diagnose that or not but I'll ask him. And I definitely need to sleep
better. Being rested is important, too.</span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">I have a lot of huge
lifestyle changes to make. I'm working on making those changes every day. I am
looking at every option from surgical weight loss to moving from my beloved
Colorado back to sea level (or as close as I can get). Being diagnosed with PH
has changed my life. It has changed David's life, too. I am sad knowing that I
cannot go back to Waldo Canyon to hike. My goal since I got sick 3 years ago
was to get back to Waldo Canyon to hike again. It's at 7000 feet, though, so that
is not an option right now. I can't go up to the summit of Pikes Peak, 14,114
feet, and get a "high altitude" donut (they just taste different up
there!). Life is different now. I'm relieved to finally have a diagnosis so
that I can move forward with my life, but it's slow going right now. I know
that, quite honestly, one of my options is to do nothing and just get worse or
at least, no better. I don't think I will do that, though. My pulmonary rehab
program evaluation is next Thursday. I may be able to start the program on
Friday, Monday at the latest. It will feel good to be active again.</span><o:p></o:p></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">The PHA website has been an
invaluable resource since hearing about PH. Not only do they provide lots of
information but they also provide a lot of support through online chats,
telephone support groups, one on one email and telephone support and
educational resources. I can't thank the people and other patients on the PHA
website enough for being there for me and helping me to navigate through all
this since being diagnosed with PH.</span></div>
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<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;">Thank you for reading this
very lengthy post. I hope it helps you to understand the journey to a PH
diagnosis and the affect it has had on my life. I hope it helps someone who
needs to be diagnosed or has been recently diagnosed with PH. </span><o:p></o:p><br />
<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;"><br /></span>
<span style="color: #141823; font-family: "Helvetica",sans-serif; font-size: 11.0pt;"><i>Written by Samantha-Anne Wagoner</i></span></div>
Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com3tag:blogger.com,1999:blog-6994306052301040952.post-2503522350225044372014-10-25T00:20:00.000-04:002014-10-25T00:20:10.372-04:00Making A DifferenceMaking A Difference Day is Saturday, October 25th. This nationwide day of community service began 20 years ago by USA Weekend Magazine, in collaboration with Points of Light. It is a day when just about anyone can go out and do something to help someone else! Clean up a park. Volunteer at a homeless shelter. Visit an elderly neighbor. So many options are out there to do something meaningful for another person. Of course, this is something that should be done daily, but at least there is one day people can share how they've helped a fellow human being.<br />
<br />
When the the topic of making a difference was brought up for the PH Plus blog, I immediately thought of something entirely different that I could write about. I must start, however, with a very brief summary of my PH journey for those out there who do not know it. I was born with a congenital heart defect, and by the time it was discovered at 9 months old, I had already developed PAH. So this disease has been my entire life, 39 years of it so far! I was always short of breath growing up, had a blue tinge most of the time on my lips, fingers and toes, and napping was my middle name. At school I was not allowed to take gym or play sports, so when my classmates when to gym, I would help the 1st grade teacher. It was then that I figured out I wanted to become a teacher! Fast forward to years later when I received a Bachelors degree in Elementary Education. I eventually started teaching in a preschool classroom, which I totally loved! I thought I'd be doing it for a very long time....until those adorable little kids started giving me way too many of their germs. By my third year, and my third major respiratory illness, my primary doctor told me to quit teaching. It was a heartbreaking thing for her to do, and for me to hear, but I was 24 at the time and never thought of quitting a job. So, all of a sudden, I didn't have a purpose. At least, that is how I felt. What was I going to do now that my dream of teaching was pretty much down the tubes??<br />
<br />
Enter a phone call from Accredo, one of the specialty pharmacies that supplies PAH medications and support to patients living with pulmonary hypertension. I wasn't really new with Accredo, having been on Tracleer for a couple years since seeing a PH specialist after quitting my job. But I was newly introduced to the idea of starting a support group in my area. It was really overwhelming to me, to be a leader of a group. And a bit terrifying, if I'm going to be honest! I was not a large crowd, people person. I had mostly been a shy person growing up, and even though I broke out of my shell a bit since leaving college, I still was really NOT fond of talking to a group of adults. Kids? Sure! Just not the grown ups!! I told the Accredo advocate that I would definitely have to really think about it. She said that was ok, and to let her know what I thought in a week or two.<br />
<br />
I spent about a week talking to my family and friends about the possibility of leading a support group. I prayed about it a lot, wondering what I should do. I mostly was worried about being in front of people, but a part of me thought, come on, just try it. So after a week, I called the Accredo rep back and told her I'd like to try running a support group! It was then that she also got me in touch with the PH Association, and the plans were in the works to find a place to have the first meeting and ways to reach out to those in the area who might like to attend.<br />
<br />
My first meeting was in October 2005. I had a small group of people attending, and I was beyond nervous! All I did, though, was introduce myself and share my PH journey. I asked others to share their stories as well, and before I knew it, the 2.5 hours were up! The first meeting was such a success, and everyone thanked me for gathering people together to discuss this illness.They were all in the same boat as me, and none of them knew there were others out there like them, too. I went home and cried a little from happiness, and knowing that I was able to help others!! And then I took a much needed nap!!<br />
<br />
In the years since I began a PH support group, I have become more involved in the PH community online as well. I host 2 of the online chats a week, and I am a PH mentor. I also belong to many PH-related groups on Facebook. I try to help anyone who has been diagnosed, including the random calls I get once in awhile from someone who happened to find me online. I was so worried when I had to quit teaching that I would not have a purpose anymore, and yet, I do. I have found my purpose! My "classroom" was not as I imagined it would be, confined to a room with 4 walls. Instead, it's everywhere I can help someone, and educate about this disease!<br />
<b><br /></b>
<b>I am making a difference.</b> I am helping others diagnosed with PH in so many ways. I get thank yous every single time a meeting is over and people start going home. I have gotten emails from totally scared and newly diagnosed patients thanking me for taking the time to respond to their copious amount of questions. I think people who return to chat often means in some way, I've made a difference in their life by being so welcoming and trying to understand and listen to their concerns. In turn, being a support to people has also helped make a huge difference in my life. I don't feel so lost anymore, especially when I've helped a person find answers and I've possibly calmed their fears. I don't feel so alone.<br />
<br />
In the spirit of Make a Difference Day, I share my story with many of my phriends who may have lost their purpose since their diagnosis. It is not impossible to find a new story, a new way to help others, even if they don't have PH. There are so many ways to make a difference in a person's life. It just takes a little time to figure out how.Colleenhttp://www.blogger.com/profile/02619732913623023461noreply@blogger.com1tag:blogger.com,1999:blog-6994306052301040952.post-68414579128909714082014-09-13T05:00:00.000-04:002014-09-13T05:00:02.371-04:00Positive Thinking Day! <div class="MsoNormal" style="vertical-align: baseline;">
<span style="font-family: Calibri, sans-serif; font-size: 11pt;">September 13th is Positive Thinking Day, and this is a special day
in my eyes. As a person living with two illnesses, positive thinking is my way
of life. It's my lifestyle. I can remember it like it was yesterday, hearing
life-changing news that could have broken me down, but all I could think
about was keeping a positive mindset. </span></div>
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<span style="font-family: Calibri, sans-serif; font-size: 11pt;"><br /></span></div>
<div class="MsoNormal" style="vertical-align: baseline; word-wrap: break-word;">
<span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; mso-bidi-font-family: "Segoe UI";">Before my diagnosis, I had always been a fan of popular quotes. I
liked to read through them, and they would make me happy. After I was diagnosed
with Lupus, and then pulmonary hypertension, these quotes energized me. I felt
a deeper spiritual connection with the words I was reading. I also felt like it
was my new purpose in life to help all people live a positive life. </span><span style="font-family: "Segoe UI","sans-serif"; font-size: 6.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="vertical-align: baseline; word-wrap: break-word;">
<span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; mso-bidi-font-family: "Segoe UI";"><br /></span></div>
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<span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; mso-bidi-font-family: "Segoe UI";">At the time of my diagnosis, I also let go of all of the stress I was
carrying with me. Until this point, I had no idea how much I let stress
control my life. I didn't want any unnecessary stuff in my life. I felt
like I already had so much to deal with, and why add on more. I always say that
I wouldn't trade my diagnosis, it changed me, but in such an amazing way. It
was like I could finally see the beauty in everything, and the wonderful in the
small things. </span><span style="font-family: "Segoe UI","sans-serif"; font-size: 6.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; mso-bidi-font-family: "Segoe UI";"><br /></span></div>
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<span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; mso-bidi-font-family: "Segoe UI";">I started to have better relationships with my friends and my
family. I started to experience life more. I mean, I wasn't scared of death
anymore. I feel like I faced death when I was diagnosed. Although I never
believed I had an expiration date, I thought that if I truly did, then I wanted to
live my best life. Here I am two years later, and I can say that the past two years
have been some of my favorite years. There has been so much change and growth, and
I owe it all to positive thinking. </span><span style="font-family: "Segoe UI","sans-serif"; font-size: 6.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; mso-bidi-font-family: "Segoe UI";"><br /></span></div>
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<span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; mso-bidi-font-family: "Segoe UI";">When negative events happen, I think it is natural to react in any
way that is right for the person experiencing them, but when these events come
up, I like to be the healthy reminder that there is always a positive side. I am
considered "Positive Polly" among my friends. I noticed that it is
difficult to see through the negative, and I think everyone is entitled to be
reminded that life has so many beautiful gifts that are hidden among the
craziness of daily life. </span><span style="font-family: "Segoe UI","sans-serif"; font-size: 6.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="vertical-align: baseline; word-wrap: break-word;">
<span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; mso-bidi-font-family: "Segoe UI";"><br /></span></div>
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<span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; mso-bidi-font-family: "Segoe UI";">I am happy to be able to live a positive lifestyle. This has given
me so many little gifts that I cherish everyday. I hope to be an inspiration to
others, so they know that with a positive mindset, you can push through any
hardship. Life is going to throw curve balls, but luckily we are strong, and we
are able to create the happiness in our lives. My wish is that everyone can
live the positive life that they choose. </span><span style="font-family: "Segoe UI","sans-serif"; font-size: 6.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="vertical-align: baseline; word-wrap: break-word;">
<span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; mso-bidi-font-family: "Segoe UI";"><br /></span></div>
<br />
<div class="MsoNormal" style="vertical-align: baseline; word-wrap: break-word;">
<span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; mso-bidi-font-family: "Segoe UI";">Happy Positive Thinking Day! </span></div>
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<span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; mso-bidi-font-family: "Segoe UI";"><br /></span></div>
<div class="MsoNormal" style="vertical-align: baseline; word-wrap: break-word;">
<span style="font-family: Calibri, sans-serif;"><span style="font-size: 15px;"><i>Written by Elisa L. </i></span></span></div>
Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com1tag:blogger.com,1999:blog-6994306052301040952.post-44062122686931178172014-08-29T12:57:00.001-04:002014-08-29T12:57:39.920-04:00More Herbs, Less Salt Day<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";">August 29th, 2014 is <em>More Herbs, Less Salt Day</em>. This is a day
that encourages people to use more herbs, more home cooked meals, and less
salt. In a world where less healthy meal options are so easy to come by, it is
difficult for most to eat healthy and balanced meals. Adding more herbs is a simple
solution to over salted options. Herbs will add to your dishes, and can be just
as satisfying as salt. </span><br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"></span><br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"></span><span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";">Living with an illness in which you are advised to eat a low-sodium
diet can be difficult. One day you are able to eat what you want when you want,
and the next day being put on a low-sodium diet can be hard to get used to,
especially when most people use salt in many dishes. It was strange at first for me to
eat low-sodium. I have always
been a healthy eater, but low-sodium was an eye-opener. There were a lot of
food items I had to cut out of my diet. After some time, eating low-sodium
became natural. Now if I eat foods high in salt, I can taste it right
away. </span><br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"></span><br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"></span><span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";">I have been able to find many delicious recipes for healthy dishes
on Pinterest. I simply searched "more herbs, less salt" and I was able to find
so many great food recipes and options! Once I had to alter my diet to low-sodium I started to cook more for myself, and I realized I love cooking healthy
food! It is nice to have control over what I am eating. I know that many
people are very busy, and healthy eating can be a bit tedious, but in the end
it is so beneficial. One of
my favorite options to make is crockpot chicken. You can cook this so many
different ways. I like to use homemade marinara sauce, spinach and chicken. I
put it all in the crock pot and let it cook on low for several hours, and then I
have delicious chicken that will last me a few days. </span><br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"></span><br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"></span><span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";">Herbs are easy for me to come by, we always have them available in
my house. You can get dried herb and spice racks almost anywhere, which are
great for trying out new herbs. Another good way
to get herbs is to have an herb garden. You don't need too much space;
since herbs are pretty small you can grow a few in your house or backyard.
I have seen retailers like Wal-Mart, Target, Home Depot, and Lowes selling
little herbs and herb boxes. They are pretty inexpensive, and easy to grow.
There are also ways of saving and freezing herbs. I have seen people freeze them
in ice cube trays, this is great because they freeze in single servings. Again,
you can find so many different ideas on Pinterest. You can check out <a href="http://www.pinterest.com/bunzinthesun/more-herbs-less-salt/" target="_blank">my own personal more herbs, less salt Pinterest board</a> for more ideas!</span><br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"></span><br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";">I think More Herbs, Less Salt Day is so important. I think too often we focus on faster rather than healthier. I hope that more people will start to incorporate more herbs
and spices into their meals. Living with illnesses sometimes bring more
awareness in all-around health, and our diets are so important. I will be
honest, sometimes I wish I could eat the unhealthy fast food items, but once I
do I feel bad and sick after. I feel better when I eat fresh foods, and
less salt. I do like to go out for meals occasionally, but I am still cautious
about what I order. </span><br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"></span><br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";">Eating healthy is extremely
popular right now, which is great because there are so many resources out there
for healthy eating tips and recipes. I hope you find some resources that will
help you to incorporate a healthier diet. </span><span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";">Here are a few resources I have found helpful: </span><br />
<ul>
<li><div class="MsoNormal" style="margin: 0in 0in 0pt; vertical-align: baseline; word-wrap: break-word;">
<span style="font-family: "Segoe UI","sans-serif"; font-size: 6pt;"><a href="http://www.pinterest.com/"><span style="font-family: "Calibri","sans-serif"; font-size: 11pt;"><span style="color: blue;">http://www.pinterest.com/</span></span></a></span><span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"> </span></div>
</li>
</ul>
<ul>
<li><div class="MsoNormal" style="margin: 0in 0in 0pt; vertical-align: baseline; word-wrap: break-word;">
<span style="font-family: "Segoe UI","sans-serif"; font-size: 6pt;"><a href="http://skinnyms.com/category/recipes/"><span style="font-family: "Calibri","sans-serif"; font-size: 11pt;"><span style="color: blue;">http://skinnyms.com/category/recipes/</span></span></a></span><span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"> </span></div>
</li>
</ul>
<ul>
<li><div class="MsoNormal" style="margin: 0in 0in 0pt; vertical-align: baseline; word-wrap: break-word;">
<span style="font-family: "Segoe UI","sans-serif"; font-size: 6pt;"><a href="http://www.mayoclinic.org/healthy-living/recipes/low-sodium-recipes/rcs-20077197"><span style="font-family: "Calibri","sans-serif"; font-size: 11pt;"><span style="color: blue;">http://www.mayoclinic.org/healthy-living/recipes/low-sodium-recipes/rcs-20077197</span></span></a></span><span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"> </span></div>
</li>
</ul>
<ul>
<li><div class="MsoNormal" style="margin: 0in 0in 0pt; vertical-align: baseline; word-wrap: break-word;">
<span style="font-family: "Segoe UI","sans-serif"; font-size: 6pt;"><a href="http://allrecipes.com/recipes/healthy-recipes/special-diets/low-sodium/"><span style="font-family: "Calibri","sans-serif"; font-size: 11pt;"><span style="color: blue;">http://allrecipes.com/recipes/healthy-recipes/special-diets/low-sodium/</span></span></a></span><span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"> </span></div>
</li>
</ul>
<ul>
<li><div class="MsoNormal" style="margin: 0in 0in 0pt; vertical-align: baseline; word-wrap: break-word;">
<span style="font-family: "Segoe UI","sans-serif"; font-size: 6pt;"><a href="http://www.foodnetwork.com/topics/low-sodium.html"><span style="font-family: "Calibri","sans-serif"; font-size: 11pt;"><span style="color: blue;">http://www.foodnetwork.com/topics/low-sodium.html</span></span></a></span><span style="font-family: "Calibri","sans-serif"; font-size: 11pt; mso-bidi-font-family: "Segoe UI";"> </span></div>
</li>
</ul>
<div class="MsoNormal" style="margin: 0in 0in 0pt; vertical-align: baseline; word-wrap: break-word;">
<span style="font-family: Calibri;"></span><br />
<em><span style="font-family: Calibri;">Written by Elisa L.</span><span style="font-family: "Segoe UI","sans-serif"; font-size: 6pt;"><o:p></o:p></span></em><br />
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<ul>
</ul>
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Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com1tag:blogger.com,1999:blog-6994306052301040952.post-84257830695428652932014-08-18T12:42:00.000-04:002014-08-18T12:42:21.281-04:00Sister's Day
<span style="font-family: Calibri;">We recently celebrated Sister's Day on August 3, 2014. No matter how
close you are with a sister, I think you will always have some special bond. I
am nine years older than my sister and we have never been extremely close, but
we do have a connection that I wouldn’t trade. We are so different, yet oddly
the same. I have never talked to my sister about my lupus and PH, but sometimes
my sister will come along to my doctor appointments. If anyone has seen me at
my worst, it has definitely been my mom and sister. It is a part of my life
that I let few people see.<o:p></o:p></span><br />
<br />
<span style="font-family: Calibri;">With these illnesses, I have done my very best to maintain an extremely
positive attitude. I want to be a role model to all who enter my life, but I especially
want my sister to know that nothing can stop you. You can have the life that
you choose, you can do anything. I asked my sister some questions about my lupus
and PH, and how she feels about this whole situation. We have never had a
conversation like this, so it was out of both our comfort zones. <o:p></o:p></span><br />
<br />
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Calibri;">My interview with my sister:<o:p></o:p></span></b><br />
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt 0.5in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Calibri;">Do you worry about your risk for developing PH or lupus because I have
them?<o:p></o:p></span></b></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt 0.5in;">
<span style="font-family: Calibri;"><span style="mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri; mso-hansi-font-family: Calibri;">Having a sister
with lupus and PH, I am concerned that I could potentially be at risk.</span> <span style="mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri; mso-hansi-font-family: Calibri;">From what I know
both illnesses can be hereditary and I've never been checked for either</span> <span style="mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri; mso-hansi-font-family: Calibri;">one.<o:p></o:p></span></span></div>
<br />
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt 0.5in;">
<b style="mso-bidi-font-weight: normal;"><span style="mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri; mso-hansi-font-family: Calibri;"><span style="font-family: Calibri;">How has my
illness impacted your life?<o:p></o:p></span></span></b></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt 0.5in;">
<span style="mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri; mso-hansi-font-family: Calibri;"><span style="font-family: Calibri;">Your health issues
do impact my life because I worry about you. I don't always know what is going
on with you being sick, so it is hard when I see you some days and I can just
tell from looking at you that you’re in pain. When I can hear you having a hard
time breathing or coughing, it’s scary because I don't know what's causing you
to have these problems. I personally don't know much about your illnesses or
what you are going through, so I don't really know what I could potentially do
to help when you’re having a bad day. It’s just hard when you know someone you
love is sick, it’s just worse when you can see the effects the illnesses have
on them.<o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri; mso-hansi-font-family: Calibri;"><o:p><span style="font-family: Calibri;"> </span></o:p></span><span style="mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri; mso-hansi-font-family: Calibri;"><span style="font-family: Calibri;">I can
understand how any person who has a sick sibling could feel scared and at risk.
Even though we have no family history of lupus or PH, it is still something
that could show up. I think that family plays an important role in my health
and my wellbeing, and it is good to know that I am supported, but I also want
my family to know that even on a bad day I will always fully support them.<o:p></o:p></span></span></div>
<br />
<span style="font-family: Calibri;">I also have a sister-in-law that I have become very close to over the
past few years. She lives in North Carolina, and I try to visit her, my
brother, and their three kids as much as possible. Jena, my sister-in-law, has
lupus. She was diagnosed at a much younger age than I was – she was only 14,
whereas I was 24 at diagnosis. In my opinion, her journey with lupus was much
more difficult than mine. I can't imagine having to go through high school with
the aches and pains and fatigue! I asked her a few questions about PH, too. <o:p></o:p></span><br />
<br />
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Calibri;">My interview with my
sister-in-law:<o:p></o:p></span></b><br />
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt 0.5in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Calibri;">5/1000 lupus patients may have PH. Had you heard of PH before you met
me? <o:p></o:p></span></b></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt 0.5in;">
<span style="font-family: Calibri;">I didn't know about
PH, and I also didn't know that 5 out of 1000 may have PH. Once I learned this
info, I realized that I could be at risk for PH, too. <o:p></o:p></span></div>
<o:p><span style="font-family: Calibri;"> </span></o:p><br />
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt 0.5in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Calibri;">You have three sisters who don’t have lupus or any other chronic
conditions. Does your lupus impact them?<o:p></o:p></span></b></div>
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt 0.5in;">
<span style="font-family: Calibri;">I don’t think my lupus
majorly impacts their lives. Our grandmother did die at the age of 28, and she
had <span style="mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri; mso-hansi-font-family: Calibri;">scleroderma, which
is another disease that can be associated with PH. </span><o:p></o:p></span></div>
<span style="mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri; mso-hansi-font-family: Calibri;"><o:p><span style="font-family: Calibri;"> </span></o:p></span><br />
<span style="font-family: Calibri;"><span style="mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri; mso-hansi-font-family: Calibri;">I am so happy for Jena, she has been able to
marry a great guy, my older brother. They have three incredible children, and
they are such a joy to be around. She is also becoming a teacher, and has about
a year left of school. It is so great to see how people in my life push through
the pain, literally. </span><o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 6pt;">
<span style="font-family: Calibri;"><span style="mso-ascii-font-family: Calibri; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri; mso-hansi-font-family: Calibri;">Sisters are so important to me. I learn so much
from them, and I do count my friends as my sisters too. Not everyone will know
the joy of fighting with their sister, and the craziness that is involved with
having a sister; it’s an experience that is hard to describe. I am blessed to
have a sister, a sister-in-law, and friends who are sisters. I try to celebrate
these people every day in some little way. </span><o:p></o:p></span></div>
<em>Written by Elisa L.</em><br />
<br />
<em>Do you have a sister or other person in your life who helps support you? Be sure to share PHA's resources for caregivers with them! Learn more at </em><a href="http://www.phassociation.org/Caregivers">www.PHAssociation.org/Caregivers</a>.Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-6994306052301040952.post-11414313465297387232014-07-15T16:53:00.000-04:002014-07-15T16:53:11.695-04:00Summertime Survival!Bright sunshine.<br />
<br />
Hot days.<br />
<br />
Warm nights.<br />
<br />
Humidity.<br />
<br />
Pool time, air conditioning!!<br />
<br />
It's summertime around the United States, which means a whole other way of surviving everyday life due to the weather outside. Much like dealing with the winter weather, many PHers need to take precautions and make adjustments to make sure they can get through the summer months with no problems. Once again I have asked fellow phriends (friends with PH!) to provide some survival tips for the summer. Here are their ideas! Many thanks to everyone who participated in this blog post!!<br />
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*Kevin B: Well anything I could offer would be obvious...like getting up early to get my yard work done or waiting until late evening etc...living in A/C and going from A/C to A/C lol although it's pretty nice down here in Terre Haute right now.<br />
<br />
*Jen C: On the Texas Gulf Coast, I stay in the AC most of the summer, try to do errands early if I can, and take frequent AC breaks if I am out for any period of time! Cool pool helps me cool off when I can and drinking cold liquids! Also dress light lol<br />
<br />
*Pat F: I want to continue walking as I did in pulm. rehab. I can do it on a treadmill...but I really like to walk for 30 minutes or so walking around Wegmans or Target. Both stores are clean, air conditioned..FLAT! I stop when I need to, pick up anything I need, or nothing at all. They both have clean restrooms. LOL (for those on diuretics) I can go to Kohls, but their carts are terrible, aisles are narrow...but it is clean and friendly.<br />
<br />
*Anna A: Stay hydrated, I know we are limited on liquids, but we still have to make sure we don't pass out from the heat. We all keep our meds with us when we leave or we should and they should be kept in a cool spot, I like to have a mini ice chest in my car. Try to stay in shady areas, we can't be in the sun too long because of the type of medications we are on. If we are going for a walk, tell someone, just in case you don't make it back. Try not to talk and walk, we could lose our breath and pass out.<br />
<br />
*Tiffany G: A/C and plenty of ice water.<br />
<br />
*Guy M: Beer and some shade (I like how Guy thinks! lol)<br />
<br />
*Alex F: Carry water with you wherever you go. Don't over exert in humidity, knocks me down for days! Go inside when too hot. Look at weather report. If it's bad for eldery or allergy sufferers, it's bad for us too.<br />
<br />
*Vernon G: When it's too hot I stay in the AC.<br />
<br />
*Patty F: South Jersey here...wear loose clothing and if you use liquid oxygen, take an extra tank to allow for evaporation in the humidity.<br />
<br />
*Catalina L: I'm out and about a lot on buses and that means waiting at bus stops on HOT days. I take umbrella, frozen water bottle, the cooling rag that my PHriend Bonnie sent me, sunglasses. And in between I will go into cool A/C stores just to look around until I cool off. Then I come home and take everything off and relax in my own A/C cool home.<br />
<br />
*Lisa T: As everyone else said, to keep hydrated. I know myself being on water pills I can get dehydrated easily. Also to keep cool. Not to eat anything heavy.<br />
<br />
*Janet P: I love being outside...and I don't have anyone who needs me at home, nor much to do during the day other than housework. So I can be out in the heat and recover when my body gets too hot. I hydrate, use the AC when it gets way too hot or muggy.<br />
<br />
*Cathy M: I use ac all the time because of the humidity. Being on the ocean we tend to have high humidity, as in 90%, most of the time.<br />
<br />
*Jennifer K: Coming from Florida, summertime means bad storms in the afternoons and the potential for tornadoes and hurricanes. We, as PAH patients, should always be ready in case of emergency but when you add those pesky little natural disasters, we have to be even more diligent! Extra back-up supplies, generators in case you lose power, knowledge of where the closest "special needs" shelter is, phone lists including your Specialty pharmacy number, oxygen company number, etc...Extra cash! AND having a designated spot to meet at if you can't go home, and a previously planned place to stay in case your home is not livable...Anyone else from the coast want to add anything? Oh yeah, homeowners insurance!!<br />
<br />
*Susan T: I hate air-conditioning because it freezes me, and I hate humid heat because it zaps me. It's not too bad at my house because I can keep the AC where it is comfortable for me. When I go to other places, though, I have to make sure I have a jacket or sweater for inside. Sometimes I still get too cold and have to go outside in the heat for awhile to get warm and then go back inside. I keep an afghan at my church because it is always too cold for me - summer and winter.<br />
<br />
*Evelyn C: Go to the water, beach or pool with the highest sun block. Maintain in the water to refresh your body from the heat. Bring some cookies and cakes with lots of drinks of all kinds.<br />
<br />
*Mary W: I get up early and do all my outside work early in the morning or late in the evening.<br />
<br />
*Deborah W: Popsicles, ice cream, water (lots of water) and a/c. When it is too hot to go out during the day, I make it a point to sit on the patio in the evenings when it cools off some.<br />
<br />
*Pat K: I use flexible ice packs. I take them with me in a small insulated nylon cooler with a bandana and apply to neck when I feel myself becoming overheated. Also in addition to sun block (apply often when you're outside), I take a large golf umbrella for daytime outdoor concerts, picnics, etc.<br />
<br />
*Joellen B: Do your running around in the morning or evening to avoid the hottest part of the day. Also ask for help with some stuff that is too hard to do!!<br />
<br />
*Regan S: I'm in the Mojave where it's regularly in the hundred and teens in the summer. I like to suck on ice cubes. Since I have to limit my water intake, sucking on ice makes my water allowance last longer! I take cool showers in the middle of the day. I exercise early, like 6am. I have a special car seat cover that holds ice packs to keep the car seat cool while I'm shopping. I carry a small misting bottle and tiny hand held fan in purse. I wear minimal clothing when it's hot and I'm at home. I just have to remember not to answer the door in my underwear...lol I keep a beach umbrella in my car, too.<br />
<br />
*Pam M: Stay in the house during the hottest time of the day! A/C, fans, lots of H2O.<br />
<br />
*Tammy D: Keep hydrated.<br />
<br />
*Kathy B: Stay hydrated. Drink water and avoid caffeinated drinks as they dehydrate the body. Pace yourself in the heat. Don't try to do everything in one day, spread the chores/errands out through the week. Do a check on each other, we do that here anyway, but if you live by phamily, check up with each other. Help each other out. Be careful of aerosol bug spray. It messes up the lungs. Use lotions, no aerosols.<br />
<br />
*Lynne C: I love Outshine Fruit Bars...25 calories and 0 sodium. Very refreshing.<br />
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If you have any summer survival tips of your own, please post in the comments below!<br />
<br />
<br />Colleenhttp://www.blogger.com/profile/02619732913623023461noreply@blogger.com1tag:blogger.com,1999:blog-6994306052301040952.post-69667278970723853692014-06-30T10:21:00.002-04:002014-06-30T10:21:36.395-04:00My First PHA 2014 ConferenceI was beyond interested and excited when I found out about <a href="https://www.phassociation.org/conference">PHA’s International PH Conference and Scientific Sessions</a>. I found out in January through my participation on the newly diagnosed advisory board with PHA, and once I heard about it I wanted to be a part of Conference. I was told by other members of the advisory board that PHA has a scholarship program to help people attend. This made me even more interested. Right away I went onto the PHA website and filled out the <a href="https://www.phassociation.org/Conference/Scholarships">scholarship application</a>. A few weeks later I received a letter in the mail from PHA informing me that I had been awarded a scholarship. At that moment I fell in love with this organization. I had already liked PHA because everyone I had the privilege of talking to via phone or email had been so amazing and so nice. This was an organization I wanted to continue to be a part of.<br />
<br />
About a week later, I received an email asking me if I wanted to participate at Conference as part of a Patient & Family Led Session. Of course, I jumped on this opportunity. I found out I would be on a panel with David and Mark, and we would be talking about communicating about PH. <em>Whoa!</em> I thought. This was the one part of having PH that I had been struggling with the past two years, but I thought this would be a great start to be more open about PH with my friends and family.<br />
<br />
I invited my mom to come with me to Conference because she is also my caregiver, and I thought she would benefit from the experience as well. We were both so excited to be attending. <br />
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<br />
We arrived at Conference late Thursday night. I was so happy to be in Indianapolis, and so happy to know that the next day I would be meeting people who were like me and living with PH. At this point I had never met another person with PH.<br />
<br />
Friday I went and met with my group for the patient led session, and it was such a wonderful experience for me. My first meeting with people living with PH. Our stories were so similar, and I could tell they understood, they fully understood. This was a feeling I had not experienced, and it was honestly one of the best feelings in my life. This was already off to a great start.<br />
<br />
As my mother and I walked around Conference we had the opportunity to meet other patients, caregivers, doctors, and family members. Everyone was in good spirits and the energy was so welcoming and friendly. We entered the Grand Ballroom and sat for the Conference opening. We had the privilege to listen to Jeannette Morrill; she is a long-term survivor of PH. She shared her journey with PH, and she is now one of my heroes. Her story was so inspiring and beautiful. I have always been hopeful living with PH the past two years, but hearing all of her challenges and how she overcame these challenges gave me a new sense of hope. I truly am beyond thankful for her sharing her story. I hope to thank her in person someday. I recommend buying her book, <em>Living with Pulmonary Hypertension: 34 Years and Counting</em>. She has been living with PH for over 38 years. Listening to Jeannette’s story was an experience I will never forget. As she stood there speaking, I had a rush of emotions all at once. A rush of tears came running down my cheeks, I couldn’t stop them. I had a mixture of emotions, but I knew that I was feeling incredibly hopeful, strong, and energized to beat PH. My life was changed by this story alone. Even writing about this right now, I can’t help but feel the same emotions. <br />
<br />
My next Conference experience was participating in the patient led session, and our topic was communicating about PH. This was such a wonderful moment for me. I got to share my story, listen to David's and Mark’s stories, and engage with other PH patients, family members, and caregivers. I am thankful to have been able to share my story, and I have made it a goal of mine to be more open and honest about living with PH with my friends and family. It was amazing to learn about David, Mark, and the patients in the audience. I will always cherish this moment. <br />
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After, my mom and I walked around. We went into the Exhibit Hall, which had various booths with lots of information. I picked up several pamphlets and information packets. It was so nice to get to walk through and meet new people and get new information. We ended the night with dinner and learned about early diagnosis and the upcoming PHCC (Pulmonary Hypertension Care Centers.) These are so interesting - <a href="https://phassociation.org/Classroom/Recording/PHAUpdates/ThePHCCInitiativeTheNextChapterOfPHManagement" target="_blank">be on the lookout for PHCCs</a>! These are PH centers that will specialize in PH. I think this is a genius idea, and hopefully this will lead to new medical advancements in treatment, early diagnosis, and a cure. This was a day full of excitement and I was beyond tired at the end of the night. Off to bed I went.<br />
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<br />
Saturday started off great! We went to breakfast and had the opportunity to meet more people, as well as, having a doctor at our table to discuss a specific topic. We sat the nutrition and PH table. Tim Lahm, MD from Indiana University School of Medicine, was our doctor. We had an interesting discussion about nutrition and PH. Dr. Lahm answered all of our questions, and I learned a lot. He was very helpful, and it was nice to meet doctors other than my own, that are committed to making a difference for patients with PH. We stopped by the <a href="http://phassociation.org/Classroom/Recording/PHAUpdates/ConferenceResearchRoom" target="_blank">Research Room</a> and had the change to participate in studies that are working toward finding more information on PH. We even got to give blood for the research, not my favorite, but I am committed to making a difference any way that I can. We then headed to the medically led session for coping with a chronic illness. I heard from medical professionals and other patients, and it was very informative. I loved being able to listen to the stories from patients, caregivers, and family members. My mom had the chance to go off on her own and attend some support group meetings for caregivers. I took a nap. Then we attended more medically led sessions, and then a very exciting fashion show. The show was a fun experience. There were PH patients showing off their personal style, and how the strut with their oxygen, and other PH treatment types. <br />
<br />
Sunday was the final day at Conference. I had been having such an great time. I attended a breakfast for <a href="https://phassociation.org/community/pha-phriends" target="_blank">PHA PHriends</a>. I was able to meet everyone in person who I had communicating with over the phone and email. That was so awesome. We had a great breakfast, and again I was able to learn more and more. I attended one more medically led session, and then Conference was wrapping up.<br />
<br />
This was my first Conference and I hope to attend every one that I can. I am already excited to go to Conference 2016 in Dallas! I am also in the works of planning a charity event benefiting PHA. I am so energized to be a part of this wonderful organization. It isn’t everyday you come into an organization and feel like family. The community is full of rock stars. The people involved are so amazing and I am so grateful for this experience. I hope everyone will be able to experience a Conference. I am thankful for the whole experience and the awesome people I met, and the other great people who shared their stories. My life is truly changed, and I am beyond blessed to have had this experience. <br />
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<em>Written by Elisa L.</em>Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-6994306052301040952.post-28684540612832371172014-05-30T08:34:00.000-04:002014-05-30T08:34:22.586-04:00My Clinical Trial ExperienceI started a medical trial in November of 2012 for my pulmonary hypertension. My doctor introduced me to the study. He was very interested in me being a part of the study because he wanted to be able to monitor my PH closely. Being that I also have Lupus my doctor wanted to be able to keep a close eye on me. I decided to be involved in the study because I wanted to learn more about PH, and I felt really bad at the time, and I also figured it would be a great way to contribute to the pulmonary hypertension community. <br />
<br />
Once I made the decision to be a part of the study, I had to do a few tests to make sure I was a good candidate for the medical study. I had to have blood tests, six minutes walks, and an EKG. If I were selected to be in the study I would be given a pill, either active medication or a placebo pill. I would have to come in monthly and so on to do more blood work, six-minute walks, and EKGs. <br /><br />
I was really excited when I got the call that I had been chosen to be a part of the trial. I don’t like taking medicine, but like I mentioned, I figured I would do my part for PH research. When I first started I was taking 1 pill in the morning, and 1 pill at night. Every few weeks I would get a call and my dose would go up. It was nice coming in and seeing the research coordinators, my doctors, and the respiratory therapist. I was able to build relationships with all of these people. All of the people involved were so wonderful, they made me feel so comfortable, and they were so helpful. I knew they all wanted the best for me. <br /><br />
I have learned so much about pulmonary hypertension through this research study. I have also gotten more involved with the PH community. I continue to educate myself, and ask questions to learn more and more. The study has brought me closer to my team of doctors and nurses. I feel so comfortable with them, and that has made being very open and honest with them very easy. I also know that they are there for me and on my team, and that is a great feeling knowing that they care. <br /><br />
I am still involved in the study, and I will most likely continue on when the study closes, at that time if I am currently on a placebo I will be given the active medicine. If you have any questions about my medical trial please ask. If you are interested in getting involved with a clinical trial, please visit <a href="http://clinicaltrials.gov/">clinicaltrials.gov</a>. <br />
<br />
<em>Written by Elisa L.</em>Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-6994306052301040952.post-59074484960282226392014-05-19T19:01:00.001-04:002014-05-20T15:25:45.870-04:00Fine just the way I am. Living with lupus.<br />
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<div style="font-size: 11pt; margin: 0in;">
<span style="color: purple;"><span style="font-family: Verdana,sans-serif;">In 2003 I started
college in Fort Collins, Colorado, at CSU. I grew up across the Rockies in
Grand Junction, which was about 6 hours away. My boyfriend had started classes
there the year before and I had fallen in love with the area. We had broken up
before the end of 2002, but I still wanted to go that direction to study
landscape architecture. </span></span></div>
<div style="font-size: 11pt; margin: 0in;">
<br /></div>
<div style="font-size: 11pt; margin: 0in;">
<span style="color: purple;"><span style="font-family: Verdana,sans-serif;">Being a poor college student, I was attending class and
working as much as I could. The second semester there I began to have issues
with my hands and wrists. Most days they hurt, but some times my fingers would
not bend well. After finally "locking" in place for a few days I
decided I needed to go to the doctor. My family doctor was hundreds of miles
away, I didn't have insurance- it was pre-ObamaCare. The physician on campus
checked me out and decided that I had carpel tunnel that needed surgery right
away. I went home, kind of freaked out, and called my mom.<span style="mso-spacerun: yes;"> </span>He had given me an anti-inflammatory to get
through the semester. My parents and I were <span style="font-size: large;"><b><i>confused</i></b></span>. I didn't work with
computers. I wasn't a "gamer", or a seamstress, mechanic, nor did I
have any other profession that was likely to lead to that outcome. So we
decided to wait a while to see what happened. </span></span></div>
<div style="font-size: 11pt; margin: 0in;">
<br /></div>
<span style="color: purple;"><span style="font-family: Verdana,sans-serif;">
</span></span><br />
<div style="font-size: 11pt; margin: 0in;">
<span style="color: purple;"><span style="font-family: Verdana,sans-serif;">Within a month I was
back in the health office. I was assigned a new doctor, and I was really
worried about changing. It ended up being a great thing! This new doctor ran
blood work and did an x-ray. When the results were in I was called back in. She
told me that I most likely had rheumatoid arthritis and asked me about my
family history. I had never been sick and I had no idea, so we called my mom.
By the end of that call we were all on the same page, and pretty sure that was
the issue. She referred me right away to a rheumatologist for further testing
and to seek treatment. </span></span></div>
<div style="font-size: 11pt; margin: 0in;">
<br /></div>
<span style="color: purple;"><span style="font-family: Verdana,sans-serif;">
</span></span><br />
<div style="font-size: 11pt; margin: 0in;">
<a href="http://3.bp.blogspot.com/-44bqgTCryUU/U3qM1kICX4I/AAAAAAAAAOk/P-OBKxTGin0/s1600/lupus.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-44bqgTCryUU/U3qM1kICX4I/AAAAAAAAAOk/P-OBKxTGin0/s1600/lupus.jpg" height="224" width="320" /></a><span style="color: purple;"><span style="font-family: Verdana,sans-serif;">This was the
beginning of my <span style="font-size: large;"><i><b>lupus journey</b></i></span>! It was<span style="mso-spacerun: yes;"> </span>a
life changing event. Throughout my young adult life I was independent, strong
willed, driven, active. The diagnosis was scary.<span style="mso-spacerun: yes;"> </span>I thought everything about me had to change.
Lupus has many different symptoms, that vary by each case. Mine had joint pain
and swelling, swelling of the pericardium, sun-sensitivity, and skin rashes.
Outdoors was my life! I rafted the Grand Canyon after I graduated high school!
I played and coached soccer! I played the clarinet. None of these were things I
could do <span style="font-size: large;"><i><b>BECAUSE</b></i></span> of the lupus.<span style="mso-spacerun: yes;"> </span>That was
2004.</span></span></div>
<div style="font-size: 11pt; margin: 0in;">
<br /></div>
<span style="color: purple;"><span style="font-family: Verdana,sans-serif;">
</span></span><br />
<div style="font-size: 11pt; margin: 0in;">
<span style="color: purple;"><span style="font-family: Verdana,sans-serif;">Throughout the years
my lupus has been found to be more than "just" lupus. I have Mixed
Connective Tissue Disorder (or Disease). That really means I have <span style="font-size: large;"><b><i>SLE </i></b></span>(systemic
lupus erythematosus)<span style="mso-spacerun: yes;"> </span>and all of the other
related autoimmune diseases. I share symptoms with Rheumatoid Arthritis,
Psoriasis, Scleroderma, and many others. It also means I am likely to respond
to their treatments as well. My lupus has "mutated", as I call it,
many times. It changes it's target in my body. The joints, skin, and heart have
remained constant, but liver involvement comes and goes, the lungs and vascular
system become involved, skin reactions have changed, and I have developed
excessive scaring in the esophagus. The biggest change in the disease has been
the development of Pulmonary Hypertension.</span></span></div>
<span style="color: purple;"><span style="font-family: Verdana,sans-serif;">
</span></span><br />
<div style="font-size: 11pt; margin: 0in;">
<span style="color: purple;"><span style="font-family: Verdana,sans-serif;">Ten years after
diagnosis, and my life <span style="font-size: large;"><b><i>HAS</i></b></span> changed. But not all for the worse. I have to take
care of the lupus. Sunscreen, medication, temperature regulation, and rest. I
have tried many drugs. Prednisone, Plaquanil, Benlysta, and Cellcept are the
current cocktail. Methotrexate, Cytoxin, Humira, gold pills, a pain medication
that quickly taken off the market, vitamins, NSAIDS, and things I can't even
begin to remember were used at some point in the treatment. That isn't the
change that I am grateful for. </span></span></div>
<br />
<br />
<div style="font-size: 11pt; margin: 0in;">
<br /></div>
<span style="color: purple;"><span style="font-family: Verdana,sans-serif;">
</span></span><br />
<div style="font-size: 11pt; margin: 0in;">
<a href="http://3.bp.blogspot.com/-3Gtii701xuA/U3qM1s3cqdI/AAAAAAAAAOs/3KijHY-PkNU/s1600/calm+zebra.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-3Gtii701xuA/U3qM1s3cqdI/AAAAAAAAAOs/3KijHY-PkNU/s1600/calm+zebra.jpg" /></a><span style="color: purple;"><span style="font-family: Verdana,sans-serif;">After grieving for
the loss of life (as I knew it, anyway), I embraced the life that lay before
me. It was an opportunity to slow down, to develop a new perspective, and to
adjust my priorities. I have become more empathetic, take life slower, am
grateful for the little wins. But most importantly, I realized health is more
than just physical. Total health is so important when living with a chronic
illness, I nourish my heart and mind as well. I took time to get well, but then
I started taking college classes again. If I had trouble, I would stop the next
semester and take time again. With enough time I volunteer to keep my heart
busy. Most recently, I have started taking leadership classes; learning
advocacy, public speaking, and creating a community program, through Colorado
FLTI.<span style="mso-spacerun: yes;"> </span></span></span></div>
<div style="font-size: 11pt; margin: 0in;">
<br /></div>
<span style="color: purple;"><span style="font-family: Verdana,sans-serif;">
</span></span><br />
<div style="font-size: 11pt; margin: 0in;">
<span style="color: purple;"><span style="font-family: Verdana,sans-serif;">My diseases have
changed me. I can't do what I used to, no rafting, no soccer, no hiking. I
can't think as fast as I used to, and I definitely don't have the stamina. But
now I have time for the more important things in life, like water gun fights
with my nephew, and fairy gardening with my niece. Yeah, I wouldn't change my
life for anything in the world.</span></span><br />
<br />
<span style="color: purple;"><span style="font-family: Verdana,sans-serif;"><i>For more information, visit <a href="http://www.phassociation.org/AssociatedDiseases/Lupus" target="_blank">PHA's lupus and PH resources</a> and <a href="http://www.lupus.org/" target="_blank">the Lupus Foundation of America website</a>.</i> </span></span></div>
<span style="color: purple;"><span style="font-family: Verdana,sans-serif;">
</span></span>Anonymoushttp://www.blogger.com/profile/03494286307773459718noreply@blogger.com1tag:blogger.com,1999:blog-6994306052301040952.post-19921748817551443862014-05-10T20:00:00.000-04:002014-05-10T20:00:00.978-04:00A Mother's Day Post<div style="text-align: left;">
<span style="font-family: Times; font-size: large; mso-bidi-font-family: Times;">For years I
struggled to find the right Mother’s Day gift, there’s only so many candles and
bubble bath sets one can give to their mom. This year I am doing something
quite different; I have invited my mother, who is also my caregiver, to come
with me to the Pulmonary Hypertension Association’s 2014 International PH Conference
and Scientific Sessions. This is our first conference and we are very excited
to be a part of the event.</span><br />
<span style="font-family: Times; mso-bidi-font-family: Times;"><br /><span style="font-size: large;">
I wanted my mom to be there for me because she is truly the only person in my life who has seen every part of my journey with pulmonary hypertension. I was 26 when I first started having symptoms and from the beginning my mom took me to every doctor appointment and every test. I was diagnosed with Lupus in August of 2010, and so I figured the symptoms might be related to my Lupus. As I sat there worried and waiting my mom
was right by my side. She has always had a way to be a calming presence in my
life. Even when I was worn thin and I would snap at her, she stayed strong for
me as my biggest supporter. In the moments when I was scared and less than
positive, I knew she was the anchor I needed in the storm I was entering.</span></span> </div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-xlNWrCzR_v8/U2uB4bmOcnI/AAAAAAAADEc/QmERYfce-LA/s1600/20140503_180048-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-xlNWrCzR_v8/U2uB4bmOcnI/AAAAAAAADEc/QmERYfce-LA/s1600/20140503_180048-1.jpg" height="268" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: Times; font-size: large; mso-bidi-font-family: Times;">So far my
mom has been by my side at all of the important moments in my life: when I was
born, all my milestones, my graduations, and she was there the moment I needed
her the most. The moment my life changed forever, a meeting with my
Pulmonologist, the moment we found out how serious pulmonary hypertension is.
The moment my mother learned that her first daughter was so ill she had a few
years to live. I can’t imagine what went through her mind, I do know that at
that moment she felt helpless, and that she would in that moment give anything
to take it all away. </span></div>
<span style="font-family: Times; mso-bidi-font-family: Times;"><br /><span style="font-size: large;">
My mom is the strongest woman I know, and I will ever know. She has shown me how to push
through any situation, she has taught me to be the brave young woman I am
today. I owe her my life, and not because she brought me into this world, but
because she has kept me here. Her love alone keeps me from breaking and her
love is the driving force behind all that I do. I love her and I am incredibly
thankful to have her as my mom.</span> </span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-layout-grid-align: none; mso-pagination: none; text-align: center;">
<span style="font-family: Times; font-size: 16pt; mso-bidi-font-family: Times;"><o:p><a href="http://2.bp.blogspot.com/-6ERyqJWb5UY/U2uBQBTcW8I/AAAAAAAADEU/ACV4higyzc8/s1600/IMG_0759.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-6ERyqJWb5UY/U2uBQBTcW8I/AAAAAAAADEU/ACV4higyzc8/s1600/IMG_0759.JPG" height="240" width="320" /></a></o:p></span></div>
<span style="font-family: Times; mso-bidi-font-family: Times;"><span style="font-size: large;">I was diagnosed with pulmonary hypertension
(PH) in June of 2012, and at this point I am feeling very well, and getting
back to being my old self. I recently started to work out, and I am getting
stronger everyday. We have chosen to be overly positive, and that has made living
with PH easier. I have always been a hopeful person and with my mom by my side
as my caregiver I wake up every day knowing that I have a wonderful support
system. I found a poem that describes how I feel about my mom, and she has been there for me in
so many ways, and even as an adult she has taken care of me, her baby. I feel
safe and strong because of her. Happy Mother’s Day Mom!<o:p></o:p></span></span>
<br />
<div class="MsoNormal" style="line-height: 44pt; margin: 0in 0in 0pt; mso-layout-grid-align: none; mso-pagination: none;">
<span style="font-size: large;"><b><span style="font-family: "Times New Roman","serif";">An Angel
(Mother's day Poem)</span></b><span style="font-family: Times; mso-bidi-font-family: Times;"><o:p></o:p></span></span></div>
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;">You're an angel from above.<br />You are there always for me.<br />During my darkest hour,<br />you're there keeping me safe and warm.<br />I never felt alone because<br />I have your very special care.<br />Inside your magic place,<br />so small yet I fit in comfortably,<br />so nice and cozy for me.</span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;"></span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;">When I came to the world,<br />even from pain<br />tears of joy fell down from your cheeks.<br />You welcome me with your<br />sweet embrace<br />and tiny warm kisses.<br />It was my first kissed<br />and first hugged that was the sweetest.</span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;"></span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;">When you heard me crying,<br />you rocked me gently<br />in your arms lovingly.<br />When I'm in pain,<br />you are crying in misery.<br />When I was sick,<br />you never slept instead lay beside me awake<br />watching me if i ever needed some help.</span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;"></span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;">You're the only one<br />who understood<br />my struggled to talk.<br />Every time I fell down<br />from my swaggering walked,<br />you're there to lend me your gentle hands<br />and keep me on my feet.</span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;"></span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;">You never lost your patience for me,<br />instead compassion and understanding<br />for all my mischiefs and wrong deeds.<br />You always give me your shoulder to lean<br />on when i needed you most.<br />I never felt alone<br />because you are always<br />there to me as a companion.</span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;"></span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;">And even now,<br />i am a full grown person<br />and have a family of my own,<br />you are still there for me<br />in case i needed someone to lean on.<br />You never think less of your children<br />instead giving them<br />all your support and attention.</span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;"></span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;">Mama,<br />you are the angel that keep me<br />always away from danger.<br />We can never repay<br />of what you sacrificed for me,<br />for us..your children.<br />Your gift to us never<br />worth even a million dollars.<br />You made us of what we are now<br />and I am very proud of you<br />and thankful to God that we have you<br />as a mother.</span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;"></span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;">A mother's gift is priceless,<br />It's the life we are breathing right now,<br />we are nothing with out our mothers.<br />Mothers are the sweetest,<br />most loving creature that<br />God have ever created.</span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;"></span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;">On this special day,<br />I vow to all mothers in the world<br />who take good care of thier children,<br />sacrificed everything for the sake of them.<br />Specially to my very own mother.</span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;"></span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;">I love you mama,<br />I don't say it always but know in your heart,<br />you are love deeply and forget you never.<br />I am just one of the luckiest cause You are my Mother.</span></span><br />
<span style="color: #333333; font-family: "Times New Roman","serif";"><span style="color: black;">Happy Mother's Day. </span></span><br />
<div class="MsoNormal" style="line-height: 24pt; margin: 0in 0in 12pt; mso-layout-grid-align: none; mso-pagination: none;">
<span style="color: #333333; font-family: "Times New Roman","serif";">By Emelita C. Smith</span><span style="font-family: Times; font-size: 16pt; mso-bidi-font-family: Times;"><o:p></o:p></span></div>
<div style="text-align: left;">
<i>Post written by Elisa L.</i></div>
Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-6994306052301040952.post-89078882411910975052014-04-26T01:11:00.000-04:002014-05-02T14:27:06.810-04:00April is Volunteer Month<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-catyOizWueQ/U1dIrM8XUtI/AAAAAAAAAN0/dVLEJ8DhheQ/s1600/volunteer1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-catyOizWueQ/U1dIrM8XUtI/AAAAAAAAAN0/dVLEJ8DhheQ/s1600/volunteer1.jpg" height="215" width="400" /></a></div>
<h2 style="font-family: Calibri; font-size: 11pt; margin: 0in; text-align: center;">
<span style="background-color: purple;"><span style="background-color: white;"><span style="font-size: x-large;"><i><span style="font-family: Verdana,sans-serif;"><span style="color: purple;">Top 10 Reasons to
Volunteer</span></span></i></span></span></span></h2>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<ol style="direction: ltr; font-family: Calibri; font-style: normal; font-weight: normal; margin-bottom: 0in; margin-left: 0.375in; margin-top: 0in; unicode-bidi: embed;" type="1">
<li style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;" value="10"><span style="color: purple;"><span style="font-size: large;"><b><i><span style="font-family: Calibri; font-style: normal; font-weight: normal;">It's good for you!</span></i></b></span></span></li>
</ol>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
It
provided mental and physical rewards:</div>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
Reduces
stress- Experts report that when you focus on someone other than yourself, it
interrupts usual tension-producing patterns.</div>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
Makes
your healthier- Moods and emotions, like optimism, joy, and control over one's
fate, strengthen the immune system.</div>
<ol style="direction: ltr; font-family: Calibri; font-style: normal; font-weight: normal; margin-bottom: 0in; margin-left: 0.375in; margin-top: 0in; unicode-bidi: embed;" type="1">
<li style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;" value="9"><span style="font-size: large;"><span style="color: purple;"><b><span style="font-family: Calibri; font-style: normal; font-weight: normal;">It saves resources!</span></b></span></span></li>
</ol>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
Volunteering
provides valuable community services so more money can be spent on local
improvements.</div>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
Estimated
value of a volunteer's time is $15.39 per hour!</div>
<ol style="direction: ltr; font-family: Calibri; font-style: normal; font-weight: normal; margin-bottom: 0in; margin-left: 0.375in; margin-top: 0in; unicode-bidi: embed;" type="1">
<li style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;" value="8"><span style="color: purple;"><b><span style="font-size: large;"><span style="font-family: Calibri; font-style: normal; font-weight: normal;">Volunteers gain professional
experience!</span></span></b></span></li>
</ol>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
You
can test out any career.</div>
<ol style="direction: ltr; font-family: Calibri; font-style: normal; font-weight: normal; margin-bottom: 0in; margin-left: 0.375in; margin-top: 0in; unicode-bidi: embed;" type="1">
<li style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;" value="7"><b><span style="color: purple;"><span style="font-size: large;"><span style="font-family: Calibri; font-style: normal; font-weight: normal;">It brings people together.</span></span></span></b></li>
</ol>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
As
a volunteer you assist in :</div>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
Uniting
people from diverse backgrounds to work toward a common goal</div>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
Building
camaraderie and teamwork</div>
<ol style="direction: ltr; font-family: Calibri; font-style: normal; font-weight: normal; margin-bottom: 0in; margin-left: 0.375in; margin-top: 0in; unicode-bidi: embed;" type="1">
<li style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;" value="6"><span style="color: purple;"><span style="font-size: large;"><b><span style="font-family: Calibri; font-style: normal; font-weight: normal;">It promotes personal growth
and self Esteem</span></b></span></span></li>
</ol>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
By
helping foster empathy and self-efficacy.</div>
<ol style="direction: ltr; font-family: Calibri; font-style: normal; font-weight: normal; margin-bottom: 0in; margin-left: 0.375in; margin-top: 0in; unicode-bidi: embed;" type="1">
<li style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;" value="5"><span style="color: purple;"><b><span style="font-size: large;"><span style="font-family: Calibri; font-style: normal; font-weight: normal;">Volunteering strengthens your
community</span></span></b></span></li>
</ol>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
<a href="http://3.bp.blogspot.com/-dXUzjK5vikg/U1dIqwAk92I/AAAAAAAAANw/SzGiHTn4WDA/s1600/volunteer2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-dXUzjK5vikg/U1dIqwAk92I/AAAAAAAAANw/SzGiHTn4WDA/s1600/volunteer2.jpg" height="155" width="200" /></a>As
a volunteer you help:</div>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 1.125in; text-align: right;">
Support
families</div>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 1.125in; text-align: right;">
Improve
schools</div>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 1.125in; text-align: right;">
Support
youth</div>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 1.125in; text-align: right;">
Beautify
the community</div>
<ol style="direction: ltr; font-family: Calibri; font-style: normal; font-weight: normal; margin-bottom: 0in; margin-left: 0.375in; margin-top: 0in; unicode-bidi: embed;" type="1">
<li style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;" value="4"><span style="color: purple;"><b><span style="font-size: large;"><span style="font-family: Calibri; font-style: normal; font-weight: normal;">You learn A LOT!</span></span></b></span></li>
</ol>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
Self-
Volunteers discover hidden talents that may change your view on our self worth.</div>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
Government-
Through working with local non-profit agencies, volunteers learn about the
functions and operation of our government.</div>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
Community-
Volunteers gain knowledge of local resources available to solve community needs</div>
<ol style="direction: ltr; font-family: Calibri; font-style: normal; font-weight: normal; margin-bottom: 0in; margin-left: 0.375in; margin-top: 0in; unicode-bidi: embed;" type="1">
<li style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;" value="3"><span style="font-size: large;"><span style="color: purple;"><b><span style="font-family: Calibri; font-style: normal; font-weight: normal;">Give you a chance to
"give back".</span></b></span></span></li>
</ol>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
People
like to support community resources that they use themselves or that benefit
people they care about.</div>
<ol style="direction: ltr; font-family: Calibri; font-style: normal; font-weight: normal; margin-bottom: 0in; margin-left: 0.375in; margin-top: 0in; unicode-bidi: embed;" type="1">
<li style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;" value="2"><span style="font-size: large;"><span style="color: purple;"><span style="font-family: Calibri; font-style: normal; font-weight: normal;">Volunteering encourages civic
responsibility</span></span></span></li>
</ol>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
Community
service and volunteerism are an investment in our community and the people who
live in it.</div>
<ol style="direction: ltr; font-family: Calibri; font-size: 11.0pt; font-style: normal; font-weight: normal; margin-bottom: 0in; margin-left: .375in; margin-top: 0in; unicode-bidi: embed;" type="1">
<li style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;" value="1"><span style="color: purple;"><i><b><span style="font-size: x-large;"><span style="font-family: Calibri; font-style: normal; font-weight: normal;">You Make A Difference!</span></span></b></i></span></li>
</ol>
<div style="font-family: Calibri; font-size: 11pt; margin: 0in 0in 0in 0.75in; text-align: right;">
Every
person counts!</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin-left: .375in; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 9.0pt; margin: 0in;">
Source- UC San Diego.
<a href="http://students.ucsd.edu/student-life/involvement/community/reasons.html">http://students.ucsd.edu/student-life/involvement/community/reasons.html</a></div>
<br />
<h2 style="font-family: Calibri; margin: 0in; text-align: center;">
<span style="font-size: x-large;"><i><b><span style="color: purple;">Everyone knows that
volunteering benefits the place your are volunteering for, but did you know it
helps YOU too?! </span></b></i></span></h2>
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<span style="font-size: x-large;"><i><b><span style="color: purple;"></span></b></i></span></h2>
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<br /></div>
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Volunteering can
offer you the opportunity to practice skills and talents that can further your
career, or even teach you a new skill that can change the direction of your
life. It the tight economic situation we find ourselves now, everything we can
do to make ourselves more valuable can be the difference between being laid off
and a promotion. </div>
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<br /></div>
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<a href="http://4.bp.blogspot.com/-Iy5_Wlb_KXc/U1dIrtNFhtI/AAAAAAAAAOE/ZKxCGSgveeE/s1600/volunteersrock.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://4.bp.blogspot.com/-Iy5_Wlb_KXc/U1dIrtNFhtI/AAAAAAAAAOE/ZKxCGSgveeE/s1600/volunteersrock.jpg" height="200" width="175" /></a>For those of us who
are unable to work, the opportunity to help others can provide us with a sense
of achievement. Depression is a major issue for us, and we have generally had
to give up our favorite activities. Volunteering gives us the chance to so for
others, to give back, and to find new hobbies and interests.</div>
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<br /></div>
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Studies have found
many physical health benefits that come from volunteering. Did you know that it
can minimize chronic pain? What about it's ability to reduce levels of
disability? Or even relieve depression? All of these things not only help us
feel better, but also have been found to make us LIVE LONGER!<span style="mso-spacerun: yes;"> </span></div>
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<br /></div>
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Making new friends,
meeting new people. These are difficult, especially in an technology driven
society. When you get out and volunteer, you are given the chance to meet other
people with at least one interest in common with you, I mean… they are there too!</div>
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<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Sometimes, all you
need is to get out into the world, a re-charge. Exercise, fresh air, sunshine,
and a little wildlife<span style="mso-spacerun: yes;"> </span>can make your day
so much better. Depending on your "job" as a volunteer, you may be able
to do any one of these while helping an organization.</div>
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<br /></div>
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Even people with a
disability can be a huge asset! There are opportunities to volunteer without
even leaving your home. Think about your skill set. Were you a professional in
your "previous life"? Some organizations are just getting started and
need help with the foundation, the "executive" side of things. Do you
know how to budget? Are you familiar with contacting potential funding sources
via phone, email, or mail? Are you a graphic artist, web designer, or artistic?
To volunteer doesn't always mean doing physical work!</div>
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<span style="color: purple;"><br /></span></div>
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<span style="color: purple;"><span style="font-size: large;">So you have decided
to volunteer, here comes the hard part! WHAT ARE YOU GOING TO DO?!
<a href="http://helpguide.org/">Helpguide.org</a> has offered a list of places to look for opportunities:</span></span></div>
<ul style="direction: ltr; margin-bottom: 0in; margin-left: .375in; margin-top: 0in; unicode-bidi: embed;" type="disc">
<a href="http://3.bp.blogspot.com/-evOmykj0psA/U1dIrc5m6EI/AAAAAAAAAOI/kXqDLgI-NJs/s1600/volunteermonth.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-evOmykj0psA/U1dIrc5m6EI/AAAAAAAAAOI/kXqDLgI-NJs/s1600/volunteermonth.jpg" height="120" width="200" /></a>
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Community theaters, museums,
and monuments.</span></li>
</ul>
<ul style="direction: ltr; margin-bottom: 0in; margin-left: .375in; margin-top: 0in; unicode-bidi: embed;" type="disc">
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Libraries or senior centers.</span></li>
</ul>
<ul style="direction: ltr; margin-bottom: 0in; margin-left: .375in; margin-top: 0in; unicode-bidi: embed;" type="disc">
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Service organizations like
Lion's Club or Rotary Clubs.</span></li>
</ul>
<ul style="direction: ltr; margin-bottom: 0in; margin-left: .375in; margin-top: 0in; unicode-bidi: embed;" type="disc">
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Youth programs, sports teams,
and after-school programs.</span></li>
</ul>
<ul style="direction: ltr; margin-bottom: 0in; margin-left: .375in; margin-top: 0in; unicode-bidi: embed;" type="disc">
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Historical restoration and
national parks.</span></li>
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Places of worship, churches,
synagogues.</span></li>
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Online databases like <a href="http://phassociation.org/Volunteer" target="_blank">PHA</a>
(hint, hint!!).</span></li>
</ul>
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<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-size: large;">They also have some
things to keep in mind while you volunteer:</span></div>
<ul style="direction: ltr; margin-bottom: 0in; margin-left: .375in; margin-top: 0in; unicode-bidi: embed;" type="disc">
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;"><span style="color: purple;"><b>Ask questions</b></span>. Make sure the
organization is looking for your skills, and that you are looking for that
opportunity.</span></li>
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;"><b><span style="color: purple;">Make sure you know what is
expected.</span></b> Know who you are volunteering for, and understand what they
want. Know what time commitment they want. Start small, DON'T OVER DO IT!</span></li>
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;"><span style="color: purple;"><b>Don't be afraid to make a
change.</b></span> This is supposed to be a good experience for both of you! If it
isn't what you expected, then you may need to look for something
different.</span></li>
</ul>
<ul style="direction: ltr; margin-bottom: 0in; margin-left: .375in; margin-top: 0in; unicode-bidi: embed;" type="disc">
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;"><span style="font-size: large;"><i><span style="color: purple;"><b>ENJOY YOURSELF!</b></span></i></span> If you are
not enjoying yourself, ask why. Is it the "what"? Or the
"who"? Are you stepping out of your comfort zone? If you know
the issue, you can make the correct decision on a course of action!</span></li>
</ul>
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<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-quwpwdG-yuQ/U1dIqzBQwyI/AAAAAAAAANs/zGWhsZSXV2g/s1600/volunteer3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-quwpwdG-yuQ/U1dIqzBQwyI/AAAAAAAAANs/zGWhsZSXV2g/s1600/volunteer3.jpg" height="200" width="200" /></a></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<b>So join me, be
selfish! </b>You can definitely make your like better by helping others do the
same! </div>
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<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
There are so many
ways to help the pulmonary hypertension community, and many of them don't
require you to leave your home.<span style="mso-spacerun: yes;"> </span>Go to <a href="http://www.phassociation.org/GetInvolved">www.PHAssociation.org/GetInvolved</a>
for ideas and information!</div>
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<br /></div>
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<br /></div>
<div style="font-family: Calibri; font-size: 9.0pt; margin: 0in;">
Sources</div>
<div style="font-family: Calibri; font-size: 9.0pt; margin: 0in;">
World Volunteer Web.
"Benefits of volunteering". October 19, 2005. <a href="http://www.worldvolunteerweb.org/resources/how-to-guides/volunteer/doc/benefits-of-volunteering.html">www.worldvolunteerweb.org/resources/how-to-guides/volunteer/doc/benefits-of-volunteering.html</a></div>
<div style="font-family: Calibri; font-size: 9.0pt; margin: 0in;">
Idealist. <a href="http://www.idealist.org/info/Volunteer/Benefits">www.idealist.org/info/Volunteer/Benefits</a></div>
<div style="font-family: Calibri; font-size: 9.0pt; margin: 0in;">
Helpguide.org. <a href="http://www.helpguide.org/">www.helpguide.org/</a></div>
Anonymoushttp://www.blogger.com/profile/03494286307773459718noreply@blogger.com0tag:blogger.com,1999:blog-6994306052301040952.post-66806891230557104352014-04-04T17:38:00.001-04:002014-04-04T17:38:40.826-04:00National Poetry Month!April is National Poetry Month! Poetry is a great way to express every emotion a person is feeling or has dealt with for any type of situation. Whether it be a poem about falling in love, describing nature's beauty, or how hard it is to deal with the death of a loved one, poetry can be a therapeutic and creative way of expressing oneself.<br />
<br />
In this blog are a few poems by some phriends who were willing to share their words about living with pulmonary hypertension. I can certainly relate to their creative expression. Can you?<br />
<br />
<u><b>The Dastardly Disease ~ by Merle R. November 2010</b></u><br />
<br />
<b>I used to be healthy; I used to be strong,</b><br />
<b>I used to work most all the day long.</b><br />
<b>And then it hit me without even a clue</b><br />
<b>I wasn't quite sure just what I could do.</b><br />
<b>I saw many doctors and then all those tests</b><br />
<b>I was diagnosed with IPAH and you know the rest.</b><br />
<b><br /></b>
<b>Pulmonary Hypertension the dastardly disease</b><br />
<b>It’s rare with no cure and progression will be</b><br />
<b>It affects the right side of heart – the lungs big time too</b><br />
<b>Those arteries get constricted and give out on you.</b><br />
<b>It’s so complicated; makes it so hard to breathe</b><br />
<b>With having this dastardly pulmonary hypertension disease.</b><br />
<b><br /></b>
<b>Shortness of breath are symptoms at first</b><br />
<b>And sometimes it feels like your heart just may burst.</b><br />
<b>That weight in your chest, fast heart beats oh my</b><br />
<b>And walking too fast may just make you cry.</b><br />
<b><br /></b>
<b>Some may get dizzy, or maybe pass out</b><br />
<b>Some are so tired - what’s that all about?</b><br />
<b>Some cannot work and don’t understand why</b><br />
<b>With little exertion they falter not fly.</b><br />
<b><br /></b>
<b>Some have edema, that swelling so bad</b><br />
<b>Retaining that fluid just makes one so sad</b><br />
<b>Some may have chest pain and may have blue lips</b><br />
<b>This disease is too serious and needs to be nipped.</b><br />
<b><br /></b>
<b>Some may have Scleroderma, Sleep Apnea or HIV</b><br />
<b>Lupus, Raynaud’s Phenomenon or maybe COPD.</b><br />
<b>There can be some causes or no cause at all</b><br />
<b>That’s when our ph doctors need to make the right call.</b><br />
<b><br /></b>
<b>We cut back on salt, smaller portions for meals,</b><br />
<b>Nutrition’s important and helps us to deal,</b><br />
<b>We deal with life changes a whole new life style</b><br />
<b>Remember it’s doable – we'll be here awhile.</b><br />
<b><br /></b>
<b>Many will ask when not feeling too well</b><br />
<b>How do I cope, how do I dwell?</b><br />
<b>Do not despair and let me just say</b><br />
<b>There are treatments out now – with more on the way</b><br />
<b>With hope and with faith we have a good chance,</b><br />
<b>To fight this disease and maybe then dance.</b><br />
<b><br /></b>
<b>Too many doctors; some specialist too</b><br />
<b>Do not understand what this ph disease can do</b><br />
<b>Luckily though and I praise God on high</b><br />
<b>There are ph doctors and nurses who do know the why</b><br />
<b>They treat us with wisdom and caring that shows</b><br />
<b>I thank them so much and I just hope they know.</b><br />
<b><br /></b>
<b>They schedule those testings they start off real slow</b><br />
<b>An echo and blood work and others you know</b><br />
<b>A six minute walk, many PFT’s, oh gee</b><br />
<b>We scurry, we’re dazzled, we come then they see.</b><br />
<b><br /></b>
<b>You may have a CAT scan, a bron-chos-co-py too</b><br />
<b>And there could be several others they may ask of you.</b><br />
<b>And then the right heart cath the gold standard of all</b><br />
<b>This proves the diagnosis is proper – they made the right call.</b><br />
<b><br /></b>
<b>Some take an oral an inhaled or such</b><br />
<b>Some with IV’s and more, oh, oh so much.</b><br />
<b>Revatio, Adcirca, Letaris, Tracleer,</b><br />
<b>Ventavis, Tyvaso are a few that are here.</b><br />
<b>Then Veletri, Remodulin or Flolan may do</b><br />
<b>And some of these meds are almost brand new.</b><br />
<b><br /></b>
<b>A hose in the nose; a tube in the chest</b><br />
<b>We struggle; we strive and hope for the best.</b><br />
<b>It is very doable this dastardly disease</b><br />
<b>With research abounding, there’s hope – so let’s breathe</b><br />
<b><br /></b>
<b>Those researchers out there, those researching now</b><br />
<b>How can we help you, with what and the how</b><br />
<b>We’re counting on you to brighten our life</b><br />
<b>You give us more hope to end all this strife.</b><br />
<b>We’ll give you some blood or whatever you need</b><br />
<b>And hope for a cure of this dastardly disease.</b><br />
<b><br /></b>
<b>The cost of these meds is abhorrently high,</b><br />
<b>We suffer, we struggle, oh my how we sigh.</b><br />
<b>Some insurance companies won’t give us a dime</b><br />
<b>The government too in their wisdom declines</b><br />
<b>Then say they will help – but they have special rules</b><br />
<b>Most are careless and thoughtless and actually cruel.</b><br />
<b><br /></b>
<b>There are specialty pharmacies and pharma reps too</b><br />
<b>With guided persistence they know what to do,</b><br />
<b>They tell all those doctors those specialists out there</b><br />
<b>About the ph meds; how they need treated with care.</b><br />
<b>Some have special nurses and advocates now</b><br />
<b>Who teach the new patients the why, what and how.</b><br />
<b>They treat us so special it’s learning one on one</b><br />
<b>They do have support for us, their work’s never done.</b><br />
<b><br /></b>
<b>There’s a ph community it spreads far and wide</b><br />
<b>We meet in some chat rooms and support groups with pride.</b><br />
<b>I've made many phriends and I value them well</b><br />
<b>Unfortunately though, and I do have to tell</b><br />
<b>I've lost ooh too many, that hurts thru and thru</b><br />
<b>This dastardly disease can do that to you.</b><br />
<b><br /></b>
<b>With our phamily support system we’re able to cope</b><br />
<b>We share with each other, there is always hope.</b><br />
<b>Hope for a future, hope for a life</b><br />
<b>Hope we’ll endure without too much strife</b><br />
<b><br /></b>
<b>Although it’s not cancer the symptoms may be</b><br />
<b>As bad, sometimes worse than that horrid disease.</b><br />
<b>PH is progressive and can cause us much pain</b><br />
<b>We must not let fear grip us, there’s still much to gain</b><br />
<b>As mentioned before and remember this now</b><br />
<b>Pulmonary Hypertension is doable – we’ll be here a while.</b><br />
<b><br /></b>
<b>Let’s take a deep breath; so slow if you please</b><br />
<b>It can strengthen those lungs with this dastardly disease</b><br />
<b>In through your nose and out through your lips</b><br />
<b>Slow is the key – please remember that tip.</b><br />
<b><br /></b>
<b>And last but not least, remember to smile</b><br />
<b>As smiles are contagious you see</b><br />
<b>And when you feel down; and bring on a frown</b><br />
<b>Turn that frown upside down just for me</b><br />
<b>Smiles make us happy and will help us cope</b><br />
<b>With having this dastardly pulmonary hypertension disease. :o)</b><br />
<b><br /></b>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-lXA9hVmPfkI/Uz7zbNEKN8I/AAAAAAAAB_s/YRoSQhWZbNk/s1600/PH+ribbon.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-lXA9hVmPfkI/Uz7zbNEKN8I/AAAAAAAAB_s/YRoSQhWZbNk/s1600/PH+ribbon.jpg" /></a></div>
<b><br /></b>
<b><span style="color: #274e13;"><u>PH Poem ~ by Catalina L. 2006</u></span></b><br />
<span style="color: #274e13;"><br /></span>
<strong style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;"><span style="color: #274e13;">~To all of us who are dealing with this terrible disease, may there soon be a cure~</span></strong><br />
<strong style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;"><span style="color: #274e13;"><br /></span></strong>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">You came into our lives when we least expected it.</span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">Because of you we are weak.</span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">Sometimes unable to speak.</span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;"><br /></span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">You are such a threat. </span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><span style="color: #274e13;"><strong>Our</strong><strong> hearts throb and we even sigh.</strong></span></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">But it doesn't mean we love you!</span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">We are just trying to catch up with our breath.</span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<br /></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">We think of you night and day.</span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">We wish you would go away.</span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span style="color: #274e13;"><em></em></span></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">We're stuck with you no matter what.</span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">If you only knew the pain you have brought</span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span style="color: #274e13;"><em></em></span></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">You're not innocent or pure.</span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">And right now there is no cure.</span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span style="color: #274e13;"><em></em><strong><em></em></strong></span></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">But we will not give up hope you see.</span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">One day a cure there will be.</span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span style="color: #274e13;"><em></em></span></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">Just as easy as you came into our lives.</span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">You will always come</span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">But will not stay.</span></strong></em></div>
<div style="background-color: white; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<em><strong><span style="color: #274e13;">And we all hope and pray for that day!</span></strong></em></div>
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<a href="http://2.bp.blogspot.com/-lXA9hVmPfkI/Uz7zbNEKN8I/AAAAAAAAB_w/RUH8c2Tvojs/s1600/PH+ribbon.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-lXA9hVmPfkI/Uz7zbNEKN8I/AAAAAAAAB_w/RUH8c2Tvojs/s1600/PH+ribbon.jpg" /></a></div>
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<b><u><span style="background-color: white; color: #741b47;">"Breathe" ~ by Laura G., September 2013</span></u></b></div>
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<b><u><span style="background-color: white; color: #741b47;"><br /></span></u></b></div>
<div style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span style="background-color: white; color: #741b47;"><b>Pumped full of life and this is true</b></span></div>
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<span style="background-color: white; color: #741b47;"><b><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;" /></b></span></div>
<div style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span style="background-color: white; color: #741b47;"><b>The only breaths I have are few</b></span></div>
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<span style="background-color: white; color: #741b47;"><b><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;" /></b></span></div>
<div style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span style="background-color: white; color: #741b47;"><b>The medicine runs through my viens</b></span></div>
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<span style="background-color: white; color: #741b47;"><b><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;" /></b></span></div>
<div style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span style="background-color: white; color: #741b47;"><b>The best days I have are when it rains</b></span></div>
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<span style="background-color: white; color: #741b47;"><b><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;" /></b></span></div>
<div style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span style="background-color: white; color: #741b47;"><b>If it's too cold outside my lungs are tight</b></span></div>
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<span style="background-color: white; color: #741b47;"><b><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;" /></b></span></div>
<div style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span style="background-color: white; color: #741b47;"><b>If it's hot they just dont feel right </b></span></div>
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<span style="background-color: white; color: #741b47;"><b><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;" /></b></span></div>
<div style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span style="background-color: white; color: #741b47;"><b>It's so scary when you lose your breath</b></span></div>
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<div style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span style="background-color: white; color: #741b47;"><b>I just wonder how many these lungs have left</b></span></div>
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<span style="background-color: white; color: #741b47;"><b><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;" /></b></span></div>
<div style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span style="background-color: white; color: #741b47;"><b>I'm few of the lucky ones who can walk around</b></span></div>
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<span style="background-color: white; color: #741b47;"><b><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;" /></b></span></div>
<div style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span style="background-color: white; color: #741b47;"><b>Without an airtank dragging them down</b></span></div>
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<span style="background-color: white; color: #741b47;"><b><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;" /></b></span></div>
<div style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span style="background-color: white; color: #741b47;"><b>I'm still really lucky if I haven't already mentioned</b></span></div>
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<span style="background-color: white; color: #741b47;"><b><br style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;" /></b></span></div>
<div style="font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 20px;">
<span style="background-color: white; color: #741b47;"><b>But it really sucks to have pulmonary hypertension</b></span></div>
Colleenhttp://www.blogger.com/profile/02619732913623023461noreply@blogger.com0tag:blogger.com,1999:blog-6994306052301040952.post-70788967657828750432014-03-26T09:00:00.000-04:002014-03-26T09:00:06.179-04:00Nutrition MonthIt’s no secret that diet is a very tricky balance to figure out following diagnosis. Patients are often told to eat low-sodium and try to maintain a healthy body weight. However, a lot of factors play into being able to adopt and maintain a proper diet. Integrating new dietary restrictions requires knowledge of what one can and cannot eat, along with the ability to prepare these foods (which can be difficult when dealing with the symptoms of PH). <br />
<br />
March is National Nutrition Month, so it’s time to renew your New Year’s Resolution to eat healthier! To help alleviate some of the confusion, here is a short guide on nutrition when living with PH and the foods you should be looking out for (both good and bad):<br />
<br />
<strong>Low Sodium:</strong> The guideline that is probably most emphasized to patients is adherence to a low sodium diet. Limiting table and seasoning salts, avoiding processed meat products (including those that are smoked, cured, salted and canned), and avoiding fast food are all ways to reduce sodium in your diet. Sodium is found in most packaged food, so be careful to read labels and pay attention to the brand: different brands may have different sodium levels despite being the same type of food. <br />
<br />
<strong>Dairy, Meat and Fats:</strong> In terms of dairy and meat, less is always more. Processed meats are usually high in sodium and carry other health concerns as well. Try to stick with leaner meats, like chicken breast, fish, lean beef, and pork chops. Limit foods that contain saturated fats and cholesterol. Good fats include olive and coconut oils, nuts and seeds, avocado and some fish. Foods labeled “low-fat” tend to actually be higher in sugar and salt, so take that into consideration when choosing foods. <br />
<br />
<strong>Fresh Foods and Fiber:</strong> You should aim to fill half of your plate with plant-based foods at every meal. Fresh veggies are best, but frozen is good too! March is also Frozen Food Month, so you may find lots of sales on frozen produce at the grocery store this month. Stock up! <br />
Try to avoid the canned varieties of vegetables, as they are higher in sodium. Whole grains, brans, fruits and vegetables are high in fiber and vegetables can be high in protein, so these are wonderful foods to incorporate into your meals. <br />
<br />
What are some of your favorite healthy dishes to make? Share in the comments below! <br />
<br />
<em>Written by Kimberly Smith, PHA Intern</em>Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-6994306052301040952.post-56760669036462069022014-02-26T22:22:00.000-05:002014-02-26T22:24:23.329-05:00Rare Disease Day 2014<br />
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<span style="color: #0b5394;"><i><span style="font-size: x-large;">A</span></i>cross </span>North America and Europe more than 60 million patients have been
diagnosed with one or more of the 6000+ "rare" diseases. If you were
to broaden the inquiry to encompass the world you would need to add millions
more. Almost every patient has family or friends that help them. I think it
would be safe to say that worldwide, more than <span style="color: #0b5394;"><span style="font-size: 24.0pt;">1
billion</span></span> people are affected by rare diseases!! That is staggering to
think about! About half of those affected are children.<br />
<br />
<span style="color: #0b5394;"><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-size: 16.0pt;">So what exactly is a rare disease?</span></i></b></span> In
the European Union, a rare disease is one affecting fewer than 1 in 2000
patients. In the United States, it is defined as affecting fewer than 200,000
Americans at any given time.<br />
<br />
<span style="font-size: x-large;"><i><span style="color: #0b5394;">S</span></i></span>ymptoms vary, not just between diseases, but also largely from patient to
patient with the same diagnosis. 80% of rare diseases have identified genetic
origins. The remaining 20% result from infections (both viral and bacterial),
allergies and environment, and most are degenerative and proliferate.<br />
<span style="color: #0b5394;"><i><span style="font-size: x-large;">M</span></i></span>isdiagnosis is a major problem for rare diseases, often because a common
symptom will hide the underlying disease.<span style="mso-spacerun: yes;">
</span>In Pulmonary Hypertension patients, we are often diagnosed early on as
having asthma, or COPD. Lupus patients are frequently thought to have the flu
in the early stages of diagnosis, or simply an allergy.<br />
<br />
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<a href="http://4.bp.blogspot.com/--Y1VJpqlHc0/Uw6qR1eJp1I/AAAAAAAAAM4/SIioJ8ggx2k/s1600/rdd-logo.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://4.bp.blogspot.com/--Y1VJpqlHc0/Uw6qR1eJp1I/AAAAAAAAAM4/SIioJ8ggx2k/s1600/rdd-logo.jpg" height="190" width="200" /></a></div>
<span style="color: #0b5394;"><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 16.0pt; line-height: 115%;">What
is Rare Disease Day?</span></i></b></span><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"> Rare Disease Day began in Europe
in 2008, coordinated by EURODIS on the international level, and National
Alliances and Patient Organizations (“umbrella organizations that regroup several
rare disease organizations in a given country or region”) on a regional level.
The goal for the campaign is to raise awareness, mainly in the general public,
about the impact of rare diseases.<i style="mso-bidi-font-style: normal;"> </i>Last
year, in 2013, more than 70 countries participated, with more expected this
year. This year’s objective is <i style="mso-bidi-font-style: normal;">“for WHO
(World Health Organization) to recognize the last day of February as the
official Rare Disease Day and raise increasing awareness for Rare Diseases
worldwide.” </i></span><br />
<br /></div>
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-size: 16.0pt;"><span style="color: #0b5394;">Join Together for Better Care!</span> </span></i></b>Caring
for those living with a rare disease is multi-faceted, requiring medication,
physical assistance or equipment, medical consult, physical therapy, social
services, respite for the family, and more. Worldwide there is a broad lack of
scientific knowledge and quality information on rare diseases, resulting in
delayed diagnosis, along with increased financial and social burdens.<br />
<i><span style="color: #0b5394;"><span style="font-size: x-large;">B</span></span></i>ecause of the increased awareness created by campaigns like Rare Disease
Day things have gotten, and can continue to get, better! Awareness of rare diseases
has allowed the implementation of more comprehensive approach to care. Better
public health policies have been developed across the world. Cooperation in
clinical and scientific research and an international sharing of scientific
knowledge on all rare diseases has led to the development of new diagnostic and
therapeutic procedures!<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/TLzNABIyhto?feature=player_embedded' frameborder='0'></iframe></div>
<span style="font-size: large;"><span style="color: #0b5394;"><b><i>Now, how can you get involved?</i></b></span></span> There
are several ways YOU can get involved, and increase awareness… without even
leaving your desk!<br />
<br />
<div style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="mso-tab-count: 1;"> <span style="color: #073763;"> </span></span><span style="color: #073763;"><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">Become a Friend-</i></b></span> <a href="http://www.rarediseaseday.org/become-a-friend">www.rarediseaseday.org/become-a-friend</a>/</div>
<div style="margin-bottom: 12.0pt; margin-left: .5in; margin-right: 0in; margin-top: 0in; text-indent: .5in;">
Patient organizations, health care professionals, drug
developers, public authorities, and any association with an interest in rare
diseases are encouraged to become Friends of Rare Disease Day! Just fill out
the form, and join the network!</div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="mso-tab-count: 1;"> </span><span style="color: #073763;"><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">Raise
and Join Hands-</i></b> </span><a href="http://www.rarediseaseday.org/join-your-hands/">www.rarediseaseday.org/join-your-hands/</a></div>
<div style="margin-bottom: 12.0pt; margin-left: .5in; margin-right: 0in; margin-top: 0in; text-indent: .5in;">
Raise your hands in a symbolic gesture before The Day to
show your solidarity with rare disease patients, take a picture, and upload it
to the site!</div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="mso-tab-count: 1;"> <span style="color: #073763;"> </span></span><span style="color: #073763;"><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">Tell
Your Story-</i></b> </span><a href="http://www.rarediseaseday.org/tell-your-story/">www.rarediseaseday.org/tell-your-story/</a></div>
<div style="margin-bottom: 12.0pt; margin-left: .5in; margin-right: 0in; margin-top: 0in; text-indent: .5in;">
Tell us how your life has been affected by a rare
disease, share words of encouragement, or an uplifting story.</div>
<div style="margin-bottom: 12.0pt; margin-left: .5in; margin-right: 0in; margin-top: 0in;">
<span style="color: #073763;"><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">Download and Share Communications Material-</i></b></span> <a href="http://www.rarediseaseday.org/get-involved-download-our-communication-materials/">www.rarediseaseday.org/get-involved-download-our-communication-materials/</a></div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .5in; margin-right: 0in; margin-top: 0in;">
<span style="color: #073763;"><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">Social Media-</i></b></span> </div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .5in; margin-right: 0in; margin-top: 0in;">
<span style="mso-tab-count: 1;"> </span><i style="mso-bidi-font-style: normal;"><span style="color: #0b5394;">Facebook-</span> </i>www.facebook.com/rarediseaseday</div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .5in; margin-right: 0in; margin-top: 0in;">
<i style="mso-bidi-font-style: normal;"><span style="mso-tab-count: 1;"> </span><span style="color: #0b5394;">Twitter-</span></i>
www.twitter.com/rarediseaseday</div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .5in; margin-right: 0in; margin-top: 0in;">
<i style="mso-bidi-font-style: normal;"><span style="mso-tab-count: 1;"> </span><span style="color: #0b5394;">YouTube-</span></i>
www.youtube.com/rarediseaseday</div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .5in; margin-right: 0in; margin-top: 0in;">
<i style="mso-bidi-font-style: normal;"><span style="mso-tab-count: 1;"> </span><span style="color: #0b5394;">Flicker-</span> </i>www.flicker.com/rarediseaseday</div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: .5in; margin-right: 0in; margin-top: 0in;">
<i style="mso-bidi-font-style: normal;"><span style="mso-tab-count: 1;"> </span><span style="color: #0b5394;">Thunderclap-</span> </i><a href="http://www.thunderclap.it/projects/8543-rare-disease-day2014-feb-28">www.thunderclap.it/projects/8543-rare-disease-day2014-feb-28</a></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="mso-tab-count: 1;"> </span><i style="mso-bidi-font-style: normal;"><span style="mso-tab-count: 2;"> </span></i>Wait…
what’s that?!</div>
<div style="margin-bottom: 12.0pt; margin-left: 1.5in; margin-right: 0in; margin-top: 0in;">
Share a single message (In this case “Today is #RareDisease Day, the day
to put rare diseases in the spotlit! Show your solidarity today <a href="http://thndr.it/1fkAYmz">http://thndr.it/1fkAYmz</a>”) simultaneously in
one THUNDERCLAP of awareness!</div>
<div style="margin-bottom: 12.0pt; margin-left: 0in; margin-right: 0in; margin-top: 0in;">
<span style="color: #073763;"><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-size: 16.0pt;">Want to learn more?</span></i></b> </span>Go to <a href="http://www.rarediseaseday.org/">www.rarediseaseday.org</a> for more
information on Rare Disease Day, for a list of sponsors, and to become
involved.<br />
<br />
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Anonymoushttp://www.blogger.com/profile/03494286307773459718noreply@blogger.com1tag:blogger.com,1999:blog-6994306052301040952.post-87640319720707896562014-02-21T22:40:00.003-05:002014-02-21T22:41:12.053-05:00Living With A Holey Heart And PHAs a child, I thought that being short of breath after running around with my sistores (an affectionate term my sisters and I call each other) was normal. I thought being exhausted and always needing naps was just part of my day. I thought having blue lips and fingernails made me different. I thought sometimes feeling dizzy once in awhile wasn't a terrible thing. I also thought all of these things were just a part of living with a heart that was special, because it had two holes. I thought this was normal. I thought this was MY normal. Little did I know there were other people out there who were experiencing much of the same thing.<br />
<br />
When I was nine months old, after several months of trying to figure out if there was something wrong with me, my parents were told that I had a congenital heart defect known as atrioventricular canal (AV Canal) and pulmonary hypertension. They were also told I might not make it to my first birthday, or I might not make it past the age of 50. What they were told, basically, was to take me home and love me the best they could. And so that is exactly what they did.<br />
<br />
I only really understood the fact that my heart had a problem, that it had two holes in it, and they were never fixed. I knew that my heart kept me from playing in gym class and participating in sports. I did run around the neighborhood as a child, but always had to rest for long periods of time afterward. I knew my heart was the reason. And while sometimes it was frustrating to deal with, it was something I became accustomed to, and eventually it just felt like MY normal.<br />
<br />
While there were many things I was not able to do, I never felt totally left out. My mom found things that I could possibly try. I did try dance lessons, but that only lasted a class or two before she realized it wasn't something I could handle. But I took organ lessons and art classes. I spent years in chorus in grade school. I was a Girl Scout for several years. I was part of the yearbook in high school, and I even became part of the girls' softball team as a scorekeeper. The one activity I remember the most, though, was volunteering in the 1st grade class when my classmates went to gym while in middle school. It was then that I knew I wanted to become a teacher, a goal that never left me even in high school when many teens don't even know what they want to be after graduation.<br />
<br />
Going to college was a challenge for me. Not academically, mind you. I did pretty well with my courses, and made the Dean's List many times. What was hard for me was navigating around the beautiful campus, walking from building to building in sometimes very cold weather and high winds. I will never forget getting into a building and going immediately into the bathroom to hide in a stall in order for me to catch my breath. Sometimes it took several minutes before I could continue to the classroom. I remember feeling like my head might explode, and my ears would ring so badly from the exhaustion that I almost couldn't hear. Finally, when my heart started to regulate and I could breathe better, I felt so tired. There were many times I felt like falling asleep in class, not because it was boring, but because just getting to the class was so tiring! I still drive through the campus all the time today, and wonder how I ever survived four years there!<br />
<br />
After graduation, I began my teaching career. I went from subbing to teaching at a daycare to teaching preschool for Headstart within a few months after getting my degree. I only lasted a few years (not even) with teaching. Many factors were against me in the environment I was working in: the building had many staircases, and my classroom was on the second floor and I had to climb the stairs from the basement to the 2nd floor at least 5 times a day, and the preschool age children were pretty tiring after spending a day with them! The biggest hurdle was trying to combat the germs. Let's face it, little kids are germ factories! No matter how many times they are told to keep sneezes to themselves, to wash their hands, etc, it didn't matter. By my third year of teaching and my third major respiratory illness, I was told to quit my job. I was 24. It never occurred to me to end my career at that age. I felt defeated. I was upset that my heart and my health could not keep up with something I wanted to do since I was a youngster myself.<br />
<br />
Even after leaving Headstart, my health didn't quite get better. I started to feel more chest pressure, like something was sitting on me and I couldn't get rid of it. I was even more short of breath than ever, and more tired than before. I went to my pediatric cardiologist, the one I'd been seeing forever, and he put me on asthma meds that never helped. I eventually talked to my primary doctor about my symptoms, and she referred me to the Cleveland Clinic in Ohio for a transplant evaluation. I was petrified of going. I couldn't believe it was coming down to this. My mom had mentioned every once in awhile what would I do if I were told I'd need a new heart. I think most of the time I was too young and naive to understand that it could become a real option. Now I was facing it, and very scared of that possibility!<br />
<br />
Appointment time came, and I did all sorts of tests: xrays, pulmonary function tests, 6 minute walk, arterial blood gas, CT scan, echo. It was a long couple of days, that's for sure! I saw a pediatric cardiologist despite being 25, and a pulmonologist. Oxygen was discussed, something I had already been using at night only, and I was told to start using it all the time. That was devastating. I cried all the way home after that. Transplantation was not on the table yet, but I was to go back to Cleveland in another three months to repeat many of the same tests. After going back a few times, I heard pulmonary hypertension being discussed more and more. I knew I had that, but I sure didn't understand what it meant. I always thought my heart was the huge issue when it came to my health. Honestly, it wasn't until my first shipment of PH medications and a flyer from the PH Association with their website that I first began to learn more about PH and exactly what it entailed.<br />
<br />
I spent a week reading the PH message boards and crying. I had found a community of people living with MY normal. Except, it really wasn't a normal way to live. I learned that it wasn't really normal to gasp for breath after trying to exercise. I found out it wasn't normal to be exhausted after making the bed. It wasn't normal to have purple nails or lips. I discovered that what I thought was normal for me my entire life was truly not the way it was supposed to be! What I discovered were what I would eventually call as phriends. People who had PH for one reason or another, and who had the many of the same symptoms and feelings as I had growing up.<br />
<br />
As if finding this rare community of people wasn't enough, in the next several years I also discovered that the reason for my PH, my congenital heart defect, was also a part of another community: adults with congenital heart disease. And, breaking down my condition even further, I have what is known as <a href="http://www.mayoclinic.org/diseases-conditions/eisenmenger-syndrome/basics/definition/con-20033676" target="_blank">Eisenmenger's Syndrome (ES)</a>. I eventually learned this along the way the more I was going to Cleveland Clinic. It's an even tinier group than PH, and I only know a very small group of people who are living with ES, as well as pretty limited information about the condition. Regardless, it was amazing to find anyone who could relate to how I'd felt my entire life!<br />
<br />
In the last almost 14 years since I had to quit my teaching job, my health has been much better. Yes, I still have some bad days where I can't seem to do much of anything besides waking up, but they are few and far between. Yes, I still get short of breath, but my recovery time from the things that make me exhausted is much less than it was when I was a child. While I'm not running marathons, I am able to exercise several times a week, a far cry from when I was young and not allowed to do much of anything physical! And while I miss being a teacher, I have come to realize that my "classroom" is not at all what I was expecting. I have been able to educate so many people about PH, and even about congenital heart disease. I've told countless strangers about both diseases when they've approached me about my need for oxygen. I've been running a PH support group in my area for about eight years, helping many people just learning about their diagnosis or finally finding people they could relate with. My online involvement with PHers seems to keep growing, from running two chat sessions a week to being a PHA mentor to friending PHers around the world on Facebook and sharing experiences. I've found my new calling in life, apparently, with the PH community.<br />
<br />
After living with PH and congenital for 38 years (so far!), I have found a new normal. I've found MY new normal. I am so thankful that I no longer feel so alone with my condition, and I hope to continue helping other PHers navigate THEIR new normal for years to come.<br />
<br />
~Colleen S.Colleenhttp://www.blogger.com/profile/02619732913623023461noreply@blogger.com0tag:blogger.com,1999:blog-6994306052301040952.post-765977159788252092014-01-30T13:16:00.001-05:002014-01-30T13:18:56.323-05:00Winter Time PreparednessIt's nearing the end of January, and boy has it been a brutal wintry season already! Blizzards, bitter cold, and something called a "polar vortex" entered into the vocabulary of over half the country in the last several weeks. Places that do not usually see very much in the way of chilling temperatures and feet of snow have been crying uncle!! People are already counting down the days until spring, but honestly, I would just love to see a day above 25 degrees!! I happen to live in an area notorious for dealing with the cold and snow, but that doesn't mean I ever get used to it! In my humble opinion, I would rather be in the middle of summer with hotter temperatures! But that is just me!!<br />
<br />
So, how does one with PH deal with the winter weather? I posed this question a couple weeks ago to phriends, and I got some great responses! Since it's still pretty bad out there, and not letting up yet, here is a compilation of their suggestions!<br />
<br />
~James: In cold weather, I stay in if I can. I read where I could experience pump problems in extreme cold temps, do not want to tempt fate. But if I have to go out, I run my 02 tubing under my clothes to keep it from freezing, and I bundle up in multiple layers. Also, have the heater in the van warming things up before I get in.<br />
<br />
~Alex: For inclement weather, I always keep extra pairs of socks and gloves in my purse starting in October. Keep them in a ziplock so they don't get wet or dirty. Usually wear 2 or 3 pairs of gloves and socks due to Raynauds. Layer on tops and wear tights under pants or jeans. Always scarf up and wear a hat. But with Raynauds so bad, I tend to not go out when weather is bad.<br />
<br />
~Rita: The cold here in Montreal has made it impossible for some of us PHers to go outside for more than a few minutes. When I absolutely have to go to an appointment, I wrap a scarf around my face and limit the amount of time (mere minutes) spent walking from public transport to the hospital door. Otherwise, I cab door to door.<br />
<br />
~Cindy: I try to pick days to go out that will be the warmest of the week. Otherwise, I just wear coat, gloves, and hat.<br />
<br />
~Jenn: I don't go out if I don't need to. If I do need to venture out, I dress as warm as effortlessly possible. Several years ago, I made the decision to stop caring about my appearance in the winter and just bundle the hell up. Leggings, warm pants, double socks, 3 shirts, bulky winter jacket, scarf, mitts, hat, huge winter boots. Even though it's hard to move wearing that many layers, I at least feel like I'm trying to keep warm. (When I see people wearing shoes in the winter I don't understand what they must be thinking - also t-shirts are incomprehensible to me during these months ((unless, of course, it is my first layering of shirt)). lol I do everything I can to try and stay warm. But mostly, I wait for spring.<br />
<br />
~Stuart: Well I am probably not one to answer the winter question, but I always keep a blanket and some food in the car and make sure I have plenty of water at home.<br />
<br />
~Stacey: I have Raynaud's too, and when I lived in the mountains, I made sure I had a warm hat and kept my core warm. Instead of wearing gloves, I wore special mittens that zipped open at the fingers with very thin gloves inside. Mittens tend to keep hands warmer than gloves. Neck warmer or scarf and ear warmer headband. Sunglasses to block wind. Ski type socks and waterproof boots with plent of good tread. Warmed up the car for several minutes prior to leaving the house and made sure I always had gas in the car. Always had a stash of air activated hand/foot warmers in extreme cases. Thin long underwear under all of my clothes (top and bottom). Hot drinks, salve for under my nose as I always got super dry, good lotion (Aquafor), chapstick, ice scraper with brush...I think that about does it!<br />
<br />
~Erin: For winter which I always have, lol, I do soup for lunch regardless because it keeps me warm for the rest of the day and tea is my best friend besides my husband...I hope this helps.<br />
<br />
~Bonnie: I get hubby to warm the car and always keep extra gloves in the car.<br />
<br />
~Susan: On surviving the winter, here is what I do: 1. Wear Cuddleduds under my regular clothes; 2. wear mostly sweatsuits or warm sweaters; 3. use Hot Hands when needed; 4. use a space heater in my drafty house; 5. wear a coat that's certified for really cold weather; 6. cover my head when I go out.<br />
<br />
~Neeta: Winter care: I am fortunate to have a wonderful husband who gives me door to door service. This comes in handy since my shortness of breath does not allow me to wear heavy clothing to be comfortable and walk even a few feet! However, I will always cover my nostrils with a warm scarf so the air I breath is warm going into the lungs. MN (Minnesota) winters are very harsh. Even for 10' or less of walking to the door, I make sure gloves are on and a something covers my scalp. No long johns...or other heavy clothing in layers. Even my shoes are easy to take off - backless ones since bending to put them back on, is not a joke! I pray that my hubby outlives me so, selfishly, can be cared for him like a Princess!<br />
<br />
I happen to follow many of the suggestions provided above in order to deal with the winter months! In the last couple weeks, I have only gone out twice, since the temperatures here have mostly been in the single digits with well negative degree windchills! When I do have to go out, and I'm by myself, I make sure my car is heated (thank you to the person who invented the car starter!!), and I wear layers. I makes sure I have my hat on, hood up over that, and scarf wrapped around my hood and my face. My gloves are on, and I'm ready to go! I also try to carry several days worth of my medications with me in case I get stuck somewhere. But mostly, I try to stay home where it's warm and if I really, really need something, I ask family and friends if they are able to get it for me.<br />
<br />
And I also THINK SPRING!!!!<br />
<br />
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~Written by Colleen Schnell</div>
Colleenhttp://www.blogger.com/profile/02619732913623023461noreply@blogger.com2tag:blogger.com,1999:blog-6994306052301040952.post-43293854101860108822014-01-20T12:10:00.000-05:002014-01-20T12:10:00.474-05:00Carson's Journey with PH+<br />
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<a href="http://1.bp.blogspot.com/-t0_d8lM7t8k/Um-98s4d31I/AAAAAAAAB1o/Y0duydhJ-GY/s1600/image.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/-t0_d8lM7t8k/Um-98s4d31I/AAAAAAAAB1o/Y0duydhJ-GY/s320/image.jpeg" width="183" /></a><span style="mso-spacerun: yes;"> </span>Carson Smith was
diagnosed with Pulmonary Hypertension (PH) and Pulmonary Veno-Occlusive Disease (PVOD ) her freshman year of
high school and has not let the disease slow her down. She is currently
enrolled in a Masters of Public Health degree program.<span style="mso-spacerun: yes;"> </span>Upon graduating this will be her second Master’s
degree. </div>
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<span style="mso-spacerun: yes;"> </span>Since we last
heard from Carson in her “<a href="http://www.phassociation.org/page.aspx?pid=894">PHA Journey’s</a>”
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<span style="mso-spacerun: yes;"> </span>In 2009, Carson
graduated from Washington University with a degree in Anthropology. She worked
for a year and used this time to adjust to her limits. During this time she was
faced with the stress of having her files transferred from a children’s, to adult
hospital, and meeting with new doctors who were not aware of her medical
history. <span style="mso-spacerun: yes;"> </span>Being a natural born athlete
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know she was healthy enough to be kept off of the list, it also left her with a
lack of security. Carson had already experienced the process of being added to
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<span style="mso-spacerun: yes;"> </span>In August of 2010,
Carson enrolled in Morehead State University in Kentucky where she pursued a Master’s
degree in Public Administration. <span style="mso-spacerun: yes;"> </span>By
December of 2010, she found herself being rushed to an emergency room and later
airlifted to a hospital in St. Louis. Doctors had discovered an accumulation of
fluid in Carson’s lungs, leaving her sedated for 6 days and in the hospital for
a total of ten. Carson had always considered herself lucky because she did not
experience a lot of the things other PH patients did. She was never reliant on
oxygen, and was always able to take oral medication. Upon being discharged from
the hospital, Carson realized once again that while she was not on oxygen, and
was able to continue in certain physical activity, she still suffered from a
severely dangerous disease. Even with this setback, she graduated in 2012 and
enrolled in a Master’s in Public Health program in August of 2012. </div>
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While faced with the complications of living with a chronic
disease, Carson has sustained a positive attitude, and has learned to
appreciate the little things in life. She has maintained an attitude of
resilience, and believes it is a trait that all PH patients should adopt. She
states “it is so much better to try and have to quit, than to not try at all.
You have to continue to fight, and use your support network.” For doctors,
Carson believes you should “allow patients to test things.” </div>
Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-6994306052301040952.post-62789085218865065452014-01-20T12:04:00.000-05:002014-01-20T12:04:00.204-05:00Kullie's Journey with PH+ (as told by her daughter, Lakesha)<!--[if gte mso 9]><xml>
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<a href="http://4.bp.blogspot.com/-krLdvEhXNnw/Ul64UbXyWWI/AAAAAAAABvo/BSs29rsaQ7M/s1600/photo+of+mom.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-krLdvEhXNnw/Ul64UbXyWWI/AAAAAAAABvo/BSs29rsaQ7M/s320/photo+of+mom.jpg" style="cursor: move;" width="240" /></a>“Continue to fight and educate, get involved and make life
comfortable.”</div>
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Kullie Sanders was diagnosed with Pulmonary Hypertension and
Pulmonary Veno-Occlusive Disease (PVOD) in November of 2010. Her journey was
one of determination and fight. </div>
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In efforts to cure through surgery what doctors thought to
be a pulmonary embolism, Kullie Sanders and her daughter, Lakesha Jones were
flown out to California by the University of California Hospital and flight for
life. After 10 minutes of surgery, the doctor approached Lakesha, explaining
that her mother had something much more serious than a pulmonary embolism.
Kullie was now diagnosed with PH and PVOD. The doctor went on to explain that
he would be surprised if Kullie survived another month. </div>
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In the months succeeding surgery, Kullie faced a number of
challenges. Having been such an active individual who was so full of life, and
often worked multiple jobs, it was difficult to adjust to becoming so short of
breath so quickly. The disease had essentially stopped her life. Kullie was now
on 22 liters of Oxygen and had trouble breathing after taking only two steps.
She was now dependent on a wheelchair, and needed transportation to be mobile. </div>
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Although Kullie was faced with these challenges, she did not
give up her fight. She had a strong determination, so strong that her doctor
stated “I have never seen a patient fight so hard.” With the progression of her
disease, it was now an accomplishment to take four steps without becoming short
of breath, or to be able to get dressed on her own. One of Kullie’s biggest
accomplishments took place at Church one Mother’s Day morning. She stood out of
her wheelchair for a prolonged period, singing and clapping her hands along to
the music.</div>
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Throughout her fight, Kullie found an extreme amount of
strength and support from her family. Although she was facing a life
threatening disease, her biggest concern was always her children, and six
grandchildren. They kept her going and fighting, she always wanted to make sure
that before anything, they were okay. </div>
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On May 21st 2011 Kullie Sanders lost her fight with PH and
PVOD. Through her battle, she continued to keep her faith in God, and
determination to keep fighting. Her daughter, Lakesha shares, “The most
frustrating part of this experience was to find out that there is a PVOD
specialist right here in Colorado after being sent to California. Make sure you
talk to doctors and find out information. I think we put a lot of trust into
doctors, but we need to make sure doctors are giving us the best care. Continue
to fight and educate, get involved, and make life comfortable.”</div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-_qmJMJNLKXA/Ul64XVfaGLI/AAAAAAAABvw/yjTRUGI8Kig/s1600/mom+and+me+for+article.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="237" src="http://3.bp.blogspot.com/-_qmJMJNLKXA/Ul64XVfaGLI/AAAAAAAABvw/yjTRUGI8Kig/s320/mom+and+me+for+article.jpg" width="320" /></a></div>
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Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-6994306052301040952.post-55388239052415067782014-01-15T11:16:00.000-05:002014-01-15T11:16:00.088-05:00A New Year, A New Beginning...Or Is It?Happy New Year! It's hard to believe that it's the year 2014 already. Where does the time go to anyway?? As I prepared to write this blog post, I asked some phriends (friends who have PH) out in Facebook-land if they had any New Year's resolutions, and if so, what were they. I was all ready to hear about healthy new goals, breaking bad habits and creating better new habits, and becoming a better human being. I was not expecting a mixed collection of responses. Some people had one or several resolutions, and others had none. Here are a few comments from several phriends on why they haven't made resolutions:<br />
<br />
<i>Alex - I don't make resolutions, never have. They just seem to put us on a fast track to failure.</i><br />
<br />
<i>Jenn - I do not make resolutions. If I want to do something, I don't need January 1st to kick me in the butt and make me do something. I've never understood the point of New Year's resolutions.</i><br />
<br />
<i>Stuart - No New Years resolutions because they are just things to fail at. Set goals instead. Realistic attainable goals.</i><br />
<br />
I will admit it, I have not made resolutions in the last few years. I have found it very hard to keep myself focused on the things I want to start doing (or stop doing), and I end up failing and feeling badly about it. So I figure, why bother? The only thing I do try to do every day throughout the entire year is be a good person, be helpful to others, and to try to maintain my health in the best way I know how. I don't really rely on the beginning of a new year to become the person I'd like to be!<br />
<br />
Now, not everyone feels that resolutions are pointless. I did have some phriends who shared their resolutions for the new year, and here they are below:<br />
<br />
<i>James - Stay out of the hospital, was in the hospital on average every 6 weeks last year and that is too many. Also going to get out and walk, when the temperature is 45 degrees or above, that's when I can tolerate the temps. </i><br />
<br />
<i>Rita - I did make a New Year's resolution: to try to find some kind of low impact exercise I can manage.</i><br />
<br />
<i>Stacey - I wouldn't call it making a resolution, but I do goal setting and reflect if I am doing things that support those goals. I do this throughout the year, but at New Year's, it's my time to re-evaluate.</i><br />
<br />
<i>Erin - So I have made resolutions my whole life. I have decided to do my 5 miles every day. That is a leap for me, I hope I can do it.</i><br />
<br />
<i>Bonnie - I try to make resolutions, but always break them. This year I'm just going to make sure I try and eat healthy and am there for my family. I'm close to God but would like to understand the Bible better.</i><br />
<br />
<i>Tiffany - I make at least one resolution a year because I become better, feel a sense of accomplishment and am moving forward. </i><br />
<br />
<i>Susan - I did not make any official New Year's resolutions this year. I am however going to try walking 7 miles a week. </i><br />
<br />
<i>Neeta - I have always made resolutions, set goals and kept them. Over the year, I re-evaluate at any special occasion (like Indian religious new year in March-April at the onset of Spring, onset of another season, etc., or whenever I simply feel like it) and add or take away the resolutions. This year, I want to get rid of a few pounds since my nose bleeds are a bit better. So, I started pulmonary rehab again. My goal is to be able to exercise without any monitoring.</i><br />
<i><br /></i>
So, how do you feel about New Year's resolutions? Did you make any resolutions for yourself? Or do you feel they are a waste of time? No matter how you feel, I do hope that each and every one of you have a terrific 2014 full of happiness, good fortune, and an abundance of healthy days ahead!!<br />
<br />
<i>-Colleen Schnell</i><br />
<br />
<br />Colleenhttp://www.blogger.com/profile/02619732913623023461noreply@blogger.com0tag:blogger.com,1999:blog-6994306052301040952.post-69907992645709750062013-11-18T08:30:00.000-05:002013-11-26T16:10:24.766-05:00The Importance of Caregivers<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">November is an incredibly important month for pulmonary hypertension, since it is the month where so many in the PH community try to spread awareness everywhere possible! But November is also special to many people who have caregivers, because it is Caregiver Awareness Month as well! A caregiver is defined as a family member or paid helper who looks after the care of someone who is sick or disabled, whether that person be an adult, a child, or an elderly person. A caregiver provides emotional and physical support as much as possible, and their helpfulness, thoughtfulness, and caring can be a blessing to the person being cared for. The following comments are from PH patients after they were asked to share what their caregivers mean to them. It is quite obvious that most of the caregivers play a huge roll in providing comfort for the PHer!</span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br /></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">Jen C: Great - we all love our caregivers that are blessed to have them ! My hubby Manny </span><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">(cg) is my rock - always there in good and bad days when it seems like the rest of the world has walked out on me !</span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br /></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">Tiffany G: My caregiver (my fiance Mike) loves and accepts me unconditionally. There is nothing that he would not do for me and the PH cause. He takes me to all of my appointments, helps me understand the Doctors, picks up my prescriptions and eats the diet that I choose to make us more healthy. He also holds me when I am sad, crying and frustrated.</span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br /></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">Barbara H: My caregiver who is my husband has been with me ever step of the way during this illness, I am so grateful for his kind, loving care, he has done without to make sure I get my medications and whatever I may need to survive.</span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br /></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">Kevin B: Joann, my caregiver does everything for me, days I cannot get off the couch she is their, every doctor's appointment she is their, times I am mad at the world she is their to show me the good in my , when I'm ready to give up she helps me carry on. With out Joann I would not have the strength or courage to make it day to day, with out Joann I could not make it through this terrible sickness.</span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br /></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28606635}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28606635}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0].[0]">I want to also mention my son Josh who time after time has helped me through troubled times like when I awoke from passing out to find him laying next to me caressing my arm telling me "it's OK dad your OK" or the numerous times he has helped me while </span></span><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28606635}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28606635}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28606635}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]">I was having a seizure or the times he has explained what PAH is to a doctor and EMS people that were unaware with what it was. To the day to day chores he does because I cannot. Between he and my wife I would never make it without them. I also have to include you folks my PHfamily and friends because you ALL help me even when your not with me because your always in my thoughts!</span></span></span></span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br /></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">Kit B: My caregiver/partner has really stepped up at home where I need it. He cooks more, goes shopping for groceries, and tries to help see that I'm able to eat nutritious food even if I'm unable to cook it! In addition to that, he provides emotional support that others cannot. He never questions my struggles -- he accepts them and we work together to try and fix what we can.</span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br /></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">Angie E: My caregiver, my husband, has fought for me through thick and thin and has saved my life so many times when there were too many doctors on the case and he was my point person, not taking "no" for an answer. He is always there when I need him even when I scream and yell because I am so tired of trying to breathe! God Bless Our Caregivers!!</span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br /></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">Sylvia T: My caregivers, my husband and son, are always there for me, pushing me when I am down...loving me when I am having a hard day...making me laugh. They cook and clean and pay the bills. I always feel the love!</span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br /></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28604301}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]">Bonnie H: </span></span><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">My hubby, Brian,</span> <span style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">is my best friend and caregiver. If I can't do something I want to do, he'll figure it out so I can participate and not get left behind. He designed a garden closer to the house so I can grow my tomatoes and beans something I really enjoy. But just being there to make me laugh helps more than anything. I am loved.</span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br /></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">Ruby Nan M: Louis, my husband, does every thing I need and never complains! He does the shopping, he does the cooking, cleans the kitchen, does most of the laundry, mixes my veletri, changes my cassette every night, sorts my pills once a month, etc. And he NEVER complains. I am very blessed. He always tries to lighten my load. He's the love of my life and my best friend and he always brings humor into the situation.</span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br /></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">James R: My caregiver is my best friend, through thick and thin, she is also my wife. She never complains, and for that reason sometimes I forget I can be a handful to take care of, She is always there, even when I don't need her to be, She is my one true love and has been for close to 24 years now. I cannot imagine doing things without her, much less her not being a part of my life.</span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br /></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28607380}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0].[0]">Tara S: My Caregiver/Partner Michael has been a blessing in my life. He has taken over so much of the housework (with a little bit of complaining) but I know how much he loves me. He has to help me shower. He has to help me change my medicine out every t</span><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28607380}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28607380}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]">wo days. He does it all without complaint. He carries the laundry out of the laundry room for me so that I can put it away if I am feeling up to it and if I am not when he gets home he will take care of it. There is nothing that he won't do for. We are waiting right now for the call for Transplant. It is very nerve wracking. He has switched shifts at work to be home with me at night in case we get the call. We have been together for 7 years. I hit the lottery when I found him.</span></span></span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br /></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">Alice Marie J: My care giver is my husband Dean, he helps me physically, emotionally and spiritually, he is my best friend, when I finally drop of to sleep I wake listening to him reading the bible to me! He is truly truly truly a gift from the Lord!</span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br /></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">Shannon W: My best friend Susan. She has been there from the min I found out and has been there physically,emotionally,and spiritually. She took time to learn about PAH and how to help. The are days she has to keep me on my toes cuz I feel so down.</span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br /></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0].[0]">Neeta P: He knows it when I am ill or well. </span><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0].[2]">He knows it when I am blue or pink. </span><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0].[4]">He will help when the time is right. </span><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0].[6]">That is just when I am in need. This one is for all our caregivers. We are so very blessed to have them in our life. He is the only one who underst</span></span><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]">ands what I am going through and does whatever is needed to keep me comfortable, feeling better. On my good days, he lets me do what I can, on my bad days, he does it all and more without a peep, always cheerful and smiling, counting his blessings that I am alive and giving him company. Yes! he too reminds me when I forget to take my meds in spite of the alarm. He is the one who carries all the grocery, whether I accompany him or not, he is the one who is my moral, emotional, physical and spiritual support reminding me at the appropriate moments to be positive, to be thankful and to be happy. Its not how many breaths we take but, how many moments of happiness we have together in life that matters! I thank god for my caregiver every day of my life, for this beautiful gift He bestowed on me as my husband!</span></span></span></span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]"><br /></span></span></span></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]">Stacey G: My hubby is my true partner in life in all ways. He caregives by giving me emotional support through the many ups/downs of having 2 chronic illnesses. He steps in when I can't and takes care of things to make my life easier, tells me I am beautiful despite my oxygen tubing and a line coming out of my chest and never gives me any worry that he won't be here for me when I need him.</span></span></span></span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]"><br /></span></span></span></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]">Barbara T: I literally would not be on this Earth had my husband & caregiver, Chuck, given up on me. He took me to 14 different doctors prior to a correct diagnosis.</span></span></span></span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]"><br /></span></span></span></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]"><span data-reactid=".r[hwny].[1][3][1]{comment338164876328566_338829539595433}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]">Lorrie T: I could not live w/o my caregiver! Joy has stood by me all along this crazy ride since dx 2 years ago. </span><span data-reactid=".r[hwny].[1][3][1]{comment338164876328566_338829539595433}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]">When I can not take care of me, she always steps in and mixes my meds. She is the most understanding of what we as patients deal with on a daily basis. I love her so much, she can't be replaced!!!!!</span></span></span></span></span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]"><span data-reactid=".r[hwny].[1][3][1]{comment338164876328566_338829539595433}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]"><br /></span></span></span></span></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]"><span data-reactid=".r[hwny].[1][3][1]{comment338164876328566_338829539595433}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]">Elaine W: My caregiver helps me out in all situations, no matter how big or how small. I couldn't do it without her, she is special and deserves an award!!</span></span></span></span></span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]"><span data-reactid=".r[hwny].[1][3][1]{comment338164876328566_338829539595433}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]"><br /></span></span></span></span></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]"><span data-reactid=".r[hwny].[1][3][1]{comment338164876328566_338829539595433}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]">Rozanne C: My caregiver is my partner, the love of my life for over 30 years. He is there for me, supporting me through physical, as well as spiritual challenges. And, I love him more each day.</span></span></span></span></span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]"><span data-reactid=".r[hwny].[1][3][1]{comment338164876328566_338829539595433}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]"><br /></span></span></span></span></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]"><span data-reactid=".r[hwny].[1][3][1]{comment338164876328566_338829539595433}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]">Jennifer S: My caregiver and loving husband is my rock and the best advocate and partner anyone could wish for. I have no idea how it would face all of life's hurdles without him.</span></span></span></span></span></span><br />
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]"><span data-reactid=".r[hwny].[1][3][1]{comment338164876328566_338829539595433}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]"><br /></span></span></span></span></span></span>
<span style="background-color: white;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0]"><span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28620620}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[3].[0].[0]"><span data-reactid=".r[hwny].[1][3][1]{comment338164876328566_338829539595433}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]">Kim F: My caregiver is my husband and he has been my rock for the last 5 years. He gladly took over all the daily house chores that I can no longer do and he waits on me hand and foot. He also learned how to mix my drugs and does that more then I do. I don't know what I would do without him he has been my best friend for over 30 years but in the last 5 has shown what better or worse really means.</span></span></span></span></span></span><br />
<span data-reactid=".r[3k7n1].[1][3][1]{comment10151725670068877_28605761}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[2]" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;"><br /></span>Colleenhttp://www.blogger.com/profile/02619732913623023461noreply@blogger.com2tag:blogger.com,1999:blog-6994306052301040952.post-80496822375211169212013-11-01T10:21:00.000-04:002013-11-07T16:15:55.924-05:00Improper Diagnosis: The Challenge of PVOD <!--[if gte mso 9]><xml>
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<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Improper Diagnosis: The Challenge of PVOD</span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Pulmonary Veno-Occlusive Disease (PVOD) is a disease
of pulmonary venules and small veins, characterized by fibrous thickening and
abnormal intimal cellularity, leading to vascular obstruction and pulmonary
hypertension <a href="http://www.phaonlineuniv.org/content.cfm?PreviewContentItem=17899&RDtoken=51743&userID=17207">(2013,
Istanbul, Pulmonary Vascular Research Institute Workshops and Debates)</a>. It
is an incredibly rare form of pulmonary hypertension. With doctors knowing so
little about the disease, it is often improperly diagnosed, or completely
undiagnosed. Patients and caregivers share their stories and reflect on their
journey.</span></div>
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<br /></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Mysterious
Symptoms</span></i><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">—</span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">“I started being seen by numerous doctors who all
had different diagnoses. I spent hours sitting through medical tests and
waiting for results. I felt like a lab rat always being poked and prodded. My
freshman year (of high-school) the doctors’ suspected severe asthma. Today, they,
and I know they were mistaken. I actually have Pulmonary Veno-Occlusive Disease
(PVOD.” –<a href="http://www.phassociation.org/page.aspx?pid=741">Carson; St.
Louis, Missouri <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></a><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"><span style="mso-spacerun: yes;"> </span>“..At every
move, I was still gasping for breath. In late August we all knew I had reached
a plateau as far as getting better. I was terribly worried since I could not
breathe if I did anything strenuous – just walking and talking were exhausting.
Finally in November, after many medical tests, and visits to various
specialists, a biopsy and heart catherization needed to be done. Armed with
those results they sent me to Boston to see another specialist. By the end of
November, we had a diagnosis – Pulmonary Hypertension Veno-Occlusive Disease.”
–<a href="http://www.phassociation.org/Journeys/MarieGarner?">Marie; Maine</a> </span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">“In November of 2010, my mom and I were flown out by
Flight for Life and the University of California hospital for surgery of what
doctors thought to be a pulmonary embolism. After 10 minutes of surgery, the
doctor said it was something more serious.” –Kullie (as told by daughter,
Lakesha; Colorado)</span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">“We had spent the last year of her life (2009-2010)
trying to sort out why she did not feel well, why she was so thin, why she
didn’t want to eat, and why she complained of not being able to get her breath.
We watched her slow down physically, finding new hobbies like reading lots of
books instead of riding her bike or playing soccer. She had many appointments
with several doctors... wrongly she was given a clean bill of health.” –<a href="http://www.phassociation.org/SometimesItsPH/AinesDiagnosisStory?">Aine
(as told by family)</a></span></div>
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<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Challenges
and frustrations…</span></i></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">“Adjusting from having my parents around to take
care of me, to taking care of myself during my first year of college was
difficult. I struggled to do things for myself, and realized that I needed to
take better care of myself. I also struggle with knowing when to tell people of
my disease, or who I should tell and who I should not.” –Carson </span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"><span style="mso-spacerun: yes;"> </span>“For years,
life had been too busy – I had lived on a diet of promises to myself that my
time to relax would come when I retired; so I was ready and eager to start my
new life. Instead on May 2 I found myself in the hospital emergency room.” –
Marie </span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"><span style="mso-spacerun: yes;"> </span>“We know now
that had the doctors looked further into just that one symptom—shortness of
breath with exertion—or had the cardiologist seen her for a follow up; or had
they not ignored her low blood states; or had they not labeled her with
anxiety; or had the pediatrician followed up where the specialist left off,
they would have found pulmonary hypertension...a lung transplant could have
saved her life had they not ignored her.” – Aine’s family </span></div>
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<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Coping…
</span></i></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">“Being physically active helped me adjust with
stress.” –Carson </span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">“My mom turned to her family, specifically my
brother and I; we were her pillars, her strength and support.” –Lakesha </span></div>
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<br /></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Why
do you believe it is important to keep looking for answers?</span></i></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">“I think we put a lot of trust into doctors, but we
need to make sure doctors are giving us the best [care]. We need to press
doctors to keep working and finding information. It was a nightmare to find out
there was a PVOD specialist right here in Colorado after being flown out to
California for treatment.” –Lakesha </span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"><span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">Advice for Others… <span style="mso-spacerun: yes;"> </span></i></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">“Always keep a positive attitude and appreciate the
little things. Cherish being able to do things and be optimistic. Keep trying
to do things, it is so much better to try and have to quit, than to not try at
all. You have to have an attitude of resilience.” –Carson </span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">“My attitude was good and maybe that’s what helped
me cope. I discovered there was life after diagnosis. This acceptance does not
mean I liked it, I can dislike something and still accept it.” –Marie </span></div>
Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-6994306052301040952.post-73364397760778138592013-10-09T20:24:00.000-04:002013-10-09T20:26:37.705-04:00Breast Cancer and PH: Similarities In Dealing With Both Ilnesses<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;">How are breast cancer and Pulmonary Arterial Hypertension the same? They continue to be never ending. PAH has its tests, doctors appointments and effects so does breast cancer. Both can have lots of doctors appointments. Both have support for anyone who needs it. I was lucky to find a local breast cancer support group and a cancer center. My doctor had flyers up for a local PH run to raise funds for research. Online is another good place for support. PAH has helped me understand and use Twitter. Message boards are a good source to.</span><br />
<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;"><br /></span>
<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;">Eleven years ago I had early stage breast cancer. I had surgery, radiation and took medicine for five years. That medicine had terrible side effects. The hot flashes and night sweats were so bad it made me question taking the medicine. I took the medicine four years and decided I wanted a good nights sleep. Because I also have Cowden's Syndrome a mutation of my PTEN gene I am at a high risk for recurrence. So I have a mammogram or a breast CT every six months. This week I saw two doctors and had an ultrasound concerning the growth I have in the bra line of the left breast radiated field. I am currently waiting for tests results.</span><br />
<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;"><br /></span>
<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;">PH and breast cancer raise money. I am slowly finding what I can do to help others with PH. I have gotten back into art. Last year I entered a bra in our local theme bra decorating contest. Women helping women a local group in Medina County help local women fund cancer screenings with a theme bra decorating contest. There is a big fancy dinner. All the bras are on display. Votes cost one dollar. There are six categories this year. Last years winners were really good. The librarians entered Fifty Shades of Pink bra. The ladies who work at the oldest school in Medina entered a bra decorated to look like a brick. It was called she is a brick house. The event raised enough money to help 26 women.</span><br />
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<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;">This year I used the global genes theme Hope its in the Genes. Global genes is a support organization for people with rare diseases. I have Cowden's Syndrome. Cowden's Syndrome is a rare disease where the PTEN gene is mutated. That gives me a high risk for many cancers including breast cancer. My bra is decorated in denim. I think it turned out really good. Hopefully it makes lots of money. </span><br />
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<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;"><i>*Story written by Tami A.*</i></span><br />
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<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;"><br /></span>Colleenhttp://www.blogger.com/profile/02619732913623023461noreply@blogger.com2tag:blogger.com,1999:blog-6994306052301040952.post-46974331986172760042013-09-30T09:30:00.000-04:002013-10-08T11:57:05.631-04:00Losing Weight While Dealing With PH -Tami's Story<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;">My name is Tami Arnold. I have pulmonary arterial hypertension, right side heart failure, a large painful arteriovenous malformation, and Cowden's Syndrome. I had early stage breast cancer in 2002 and colon cancer in 2008. I like food, especially ketchup, tomato sauce and chocolate. Sunday evening was date night for me and my husband. That meant Chinese food. It got so bad the staff knew what we want before we told them. I never met an ice cream I didn't like. For a long time I ate way too much so...I gained weight.</span><br />
<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;"><br /></span>
<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;">I like working out. Exercise class was fun. Having thirty minutes on the treadmill listening to my music is great. The feeling I got completing a personal workout goal was great. I grew up in an active family. My dad was a distance runner. We were on the swim team in the summer. Swam during the day. Fall was swim team at the Y and gymnastics after swim practice. As an adult I did exercise classes, worked out and did spinning class with my husband. For along time I didn't see the connection between what you ate, exercise, and how much I weighted. Lots of things helped me put everything together. A big part was when I found out about my PAH and right side heart failure. Over the years my arteriovenous malformation needed embolismed to help with the pain. In 2007 I had an emblozation. I left the hospital with an upset stomach, shortness of breathe and heart palpitations. Before the end of the week I was back in the hospital. After a two week hospital I had a PAH and right side heart failure diagnoses.</span><br />
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<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;">Two thing helped me realize I needed to do something about my weight. I felt really bad. So bad that when anyone mentioned my weight I didn't care. While recovering I realized I didn't weigh that much when I was pregnant. Who ever thought my weight would be almost 200 pounds. Our health insurance was offering a rebate to anyone who joined Weight Watchers. You had to pay in full, were only allowed to miss three meeting and the insurance company got your results. The rebate made me want to give it a try. After talking to my husband he wanted to join to. That was great. We had support at home.</span><br />
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<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;">Because I was working we ended up going to different support meetings. My first meeting was not bad. You stand in line and step on the scale for a total stranger. I am 5 ft 5. My starting weight was 189. I was upset with my self and grateful no one saw the scale. The lady who saw my starting weight was very encouraging. She told me I didn't have much to lose, then pointed to her before and after picture. The weeks I gained weight because of fluid retention she was understanding. Every week I got in her line. My first meeting, I was the only newcomer. After telling the instructor about PAH, her first words were follow your doctors advice first. All she knows is the program. I still follow her words today.</span><br />
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<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;">The first couple of weeks were frustrating. Along with counting points I had to look at sodium. Yes we got starter recipes. We didn't have most of the ingredients in the kitchen. I never liked math let alone counting points and keeping track of what I ate. So I decided to try new things with an open mind. We bought bananas, carrots and any fruit in season on sale in the house to snack on. I tried lots of new things for dinner. Who knew chicken could taste so good. I marinade chicken in mustard and lemon juice. Before 2007 I didn't like any kind of mustard. I made fish for dinner using just the microwave. I can make three kinds of chili, better than my mom. We still have steak. Now we have one steak and split it. Yes there are time I think I'm going to scream if I see another baked potato. But I make great baked steak fries. Fried rice takes time but I getting good at making it. Because of right side heart failure I don't have much of an appetite, so I started eating only when I was hungry and stopped when I was full. That seemed to work for me. I did not count points.</span><br />
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<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;">Because of fluid retention my weight loss was up and down. That made losing weight very hard and frustrating. My husband Dave lost weight every week. Doing it together helped. Dave learned to cook. If I found a recipe I liked, one of the first things I looked at was the sodium contain. Who knew ketchup and spaghetti sauce have so much sodium. We now have a kitchen full of spices. It had been a long time since I used the crock pot. The last time I opened the canned soup, added water and put the meat in. Crock pot cooking has come a long way since them. Now a days you brown the meat, add fresh vegetables, spices. No more canned soup. That adds way to much salt. Last Thanksgiving we cooked a small turkey for two in the crock pot. It turned out great and we had leftovers for a couple of days. Don't get me started on healthy microwave cooking and why I like fish.</span><br />
<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;"><br /></span>
<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;">I have to do whats best for me when it comes to exercise. Because of PH, heart failure issues, and I can not feel the bottoms of my feet an issue left from chemo. After breaking my foot I do things at my pace. The walks might be slower by I'm walking. In Ohio there are lots of reasons its hard to exercise every day. As the days get shorter I'm only about to go with hubby and the dog on the afternoon walk. Snow and bad weather will make even that walk harder for me. In bad weather I try to use my environment for more exercise. If possible I make an extra lap around the store. </span><br />
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<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;">My doctor keeps telling to to focus on what I can do not what I use to do and quit letting pride get in the way. That is really hard for me. We went to an Indians baseball game this July. Our last row seats were hard for me. Baseball games mean LOTS of walking. The last two flight of steps were straight up. I had to stop twice. My brother saw that. </span><br />
<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;"><br /></span>
<span style="background-color: white; color: #444444; font-family: 'Times New Roman', serif; font-size: 16px; line-height: 22px;">I am learning my mom and dad had good ideas about food and exercise. My mom only bought one box of cookies every two weeks. We had one box of sugared cereal every two weeks. That's enjoying something you like while eating healthy. I still eat chocolate and ice cream. Just not every day and in smaller amounts. I like to cook again. Since 2007 I found out fast food isn't fast. What I can make is fast, tastes good and low in salt. I have given up the salt shaker. Found is better with less salt. Exercise is what you make of it. Start small and do something every day. My husband Dave and I have kept our weight off since 2008. Teamwork helps. He loves to cook. I get new food ideas from all kinds of places. On Twitter I found someone who's blog had the best ideas about easy,cheap, low salt homemade pizza. We had pizza for dinner last night. Reward your successes. I like the occasional peanut butter cup. Shopping for a smaller size never gets old. Yes I still look at my skinny reflection whenever I can and smile. My weight today is 153. Tonights dinner is opened back fried chicken made with corn flake crumbs with my baked steak fries and cole slaw.</span><br />
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Colleenhttp://www.blogger.com/profile/02619732913623023461noreply@blogger.com0tag:blogger.com,1999:blog-6994306052301040952.post-5968552880327359192013-09-17T11:15:00.000-04:002013-09-17T11:15:00.183-04:00Double Jeopardy -Rare disease x2<!--[if gte mso 9]><xml>
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<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-trK-GxfqfdQ/Ugue9Z6XokI/AAAAAAAABeg/nFhKH1EHv9s/s1600/MARCIA+PIC+.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-trK-GxfqfdQ/Ugue9Z6XokI/AAAAAAAABeg/nFhKH1EHv9s/s320/MARCIA+PIC+.JPG" width="240" /></a></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">In 1973, at
age sixteen, while living in Jamaica, WI, I noticed strange things happening to
my body. My athletic, lithe self was slowly becoming tight, stiff and painful
and I was tired all the time. This phenomenon could not be seen by anyone, but
I definitely felt it. Over the next few months, my lack of speed was obvious in
my track and field competitions and in my basketball practices. The pain and fatigue
became overwhelming and as a result I had to drop out of high school my senior
year.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">A diagnosis
of scleroderma (rare disease #1) was made about a year after my initial
symptoms and the doctor told my parents I had two years to live. This time
frame was kept secret from me for about 10 years. I spent 4 months in the
hospital and my dramatic physical decline coupled with what I now realize was a
deep depression kept me in a downward spiral to the point where I essentially became
an invalid. During a period of about 8-10 years after my initial diagnosis, for
no apparent reason, I began feeling better. The darkness cleared and I slowly
began to regain my independence. With family support and by the grace of God, I
was able to finish high school (at 26), get my driver’s license (a big deal at
the time), graduate from college (at 34) get my master’s degree (at 35), travel
extensively over Europe and the Caribbean, purchase my own house, mentor
numerous children, and work in a career as an accountant for 25 years before
being hit by PAH in 2009 (rare disease #2).</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">My house is
right around the corner from the bus stop and one cool March day, as I left my
home to run an errand, I heard the familiar diesel engine sound of a bus
slowing down. So, like I had so easily done countless times before, I ran to
catch the bus. But this time even though I caught the bus, I was completely and
almost totally out of breath the point of near fainting. Luckily there were
available seats on the bus. After a few minutes the palpitations slowed and I
was able to relax. At my next doctor’s appointment I mentioned the incident to
my rheumatologist who immediately knew that it could probably be pulmonary
arterial hypertension (PAH) and referred me to a PH specialist.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">Dr. Roxanna
Sulica from Beth Israel Hospital in NYC did a right-heart catherization and
determined that I indeed had PAH. Since then my life has taken a different
turn. I retired a year after my diagnosis and, after repeated allergic reactions
to Letairis and Tracleer, I am now stable on Adcirca, and I get tremendous
benefit from pulmonary rehab, support groups and the educational conferences
and forums.</span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">To everyone
with PAH and/or scleroderma, realize that there are going to be stages to your
life and you will have to keep making adjustments to your “normal” every time
you experience a setback or a disappointment. However, your life can still be
rewarding and full even with 2 rare autoimmune diseases. </span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">Somebody
once said, “If you choose to sing, you will always find a song,” and I choose
to sing. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">MY BIO</span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">I was born
and raised in Jamaica, WI.<span style="mso-spacerun: yes;"> </span>I moved to
the United States in 1983.</span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">I retired in
2010 at 55 years old from a 25-year public service career as an accountant with
NYC government.</span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">I now
volunteer with an organization called New York Cares and support community
service projects close to my heart, especially those that benefit the well-being
of the disabled and other disadvantaged groups.</span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">My PAH is
secondary to scleroderma. I have experienced practically all the manifestations
of both diseases. I do not travel out of the country as extensively as I used
to, primarily because of the many adjustments needed for air travel with PAH.
There are times I cannot get out of bed, but when I can I make sure I get out
of the house. I am determined to keep a song in my heart because it makes me
feel better and reinforces my usual positive, hopeful outlook on life.</span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">I live in
Brooklyn, New York and I have a host of family members and friends close by for
support. </span></div>
Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0