Tuesday, July 15, 2014

Summertime Survival!

Bright sunshine.

Hot days.

Warm nights.


Pool time, air conditioning!!

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!!


*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.

*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

*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.

*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.

*Tiffany G: A/C and plenty of ice water.

*Guy M: Beer and some shade (I like how Guy thinks! lol)

*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.

*Vernon G: When it's too hot I stay in the AC.

*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.

*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.

*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.

*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.

*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.

*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!!

*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.

*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.

*Mary W: I get up early and do all my outside work early in the morning or late in the evening.

*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.

*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.

*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!!

*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.

*Pam M: Stay in the house during the hottest time of the day! A/C, fans, lots of H2O.

*Tammy D: Keep hydrated.

*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.

*Lynne C: I love Outshine Fruit Bars...25 calories and 0 sodium. Very refreshing.


If you have any summer survival tips of your own, please post in the comments below!

Monday, June 30, 2014

My First PHA 2014 Conference

I was beyond interested and excited when I found out about PHA’s International PH Conference and Scientific Sessions. 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 scholarship application. 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.

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. Whoa! 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.

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.

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.

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.

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, Living with Pulmonary Hypertension: 34 Years and Counting. 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.

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.

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 - be on the lookout for PHCCs! 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.

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 Research Room 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.

Sunday was the final day at Conference. I had been having such an great time. I attended a breakfast for PHA PHriends. 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.

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.

Written by Elisa L.

Friday, May 30, 2014

My Clinical Trial Experience

I 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.

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.

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.

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.

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 clinicaltrials.gov.

Written by Elisa L.

Monday, May 19, 2014

Fine just the way I am. Living with lupus.

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. 

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.  He had given me an anti-inflammatory to get through the semester. My parents and I were confused. 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. 

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. 

This was the beginning of my lupus journey! It was  a life changing event. Throughout my young adult life I was independent, strong willed, driven, active. The diagnosis was scary.  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 BECAUSE of the lupus.  That was 2004.

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 SLE (systemic lupus erythematosus)  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.

Ten years after diagnosis, and my life HAS 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. 

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.  

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.

For more information, visit PHA's lupus and PH resources and the Lupus Foundation of America website.

Saturday, May 10, 2014

A Mother's Day Post

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.

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.

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.

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.

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!
An Angel (Mother's day Poem)
You're an angel from above.
You are there always for me.
During my darkest hour,
you're there keeping me safe and warm.
I never felt alone because
I have your very special care.
Inside your magic place,
so small yet I fit in comfortably,
so nice and cozy for me.

When I came to the world,
even from pain
tears of joy fell down from your cheeks.
You welcome me with your
sweet embrace
and tiny warm kisses.
It was my first kissed
and first hugged that was the sweetest.

When you heard me crying,
you rocked me gently
in your arms lovingly.
When I'm in pain,
you are crying in misery.
When I was sick,
you never slept instead lay beside me awake
watching me if i ever needed some help.

You're the only one
who understood
my struggled to talk.
Every time I fell down
from my swaggering walked,
you're there to lend me your gentle hands
and keep me on my feet.

You never lost your patience for me,
instead compassion and understanding
for all my mischiefs and wrong deeds.
You always give me your shoulder to lean
on when i needed you most.
I never felt alone
because you are always
there to me as a companion.

And even now,
i am a full grown person
and have a family of my own,
you are still there for me
in case i needed someone to lean on.
You never think less of your children
instead giving them
all your support and attention.

you are the angel that keep me
always away from danger.
We can never repay
of what you sacrificed for me,
for us..your children.
Your gift to us never
worth even a million dollars.
You made us of what we are now
and I am very proud of you
and thankful to God that we have you
as a mother.

A mother's gift is priceless,
It's the life we are breathing right now,
we are nothing with out our mothers.
Mothers are the sweetest,
most loving creature that
God have ever created.

On this special day,
I vow to all mothers in the world
who take good care of thier children,
sacrificed everything for the sake of them.
Specially to my very own mother.

I love you mama,
I don't say it always but know in your heart,
you are love deeply and forget you never.
I am just one of the luckiest cause You are my Mother.

Happy Mother's Day.
By Emelita C. Smith
Post written by Elisa L.

Saturday, April 26, 2014

April is Volunteer Month

Top 10 Reasons to Volunteer

  1. It's good for you!
It provided mental and physical rewards:
Reduces stress- Experts report that when you focus on someone other than yourself, it interrupts usual tension-producing patterns.
Makes your healthier- Moods and emotions, like optimism, joy, and control over one's fate, strengthen the immune system.
  1. It saves resources!
Volunteering provides valuable community services so more money can be spent on local improvements.
Estimated value of a volunteer's time is $15.39 per hour!
  1. Volunteers gain professional experience!
You can test out any career.
  1. It brings people together.
As a volunteer you assist in :
Uniting people from diverse backgrounds to work toward a common goal
Building camaraderie and teamwork
  1. It promotes personal growth and self Esteem
By helping foster empathy and self-efficacy.
  1. Volunteering strengthens your community
As a volunteer you help:
Support families
Improve schools
Support youth
Beautify the community
  1. You learn A LOT!
Self- Volunteers discover hidden talents that may change your view on our self worth.
Government- Through working with local non-profit agencies, volunteers learn about the functions and operation of our government.
Community- Volunteers gain knowledge of local resources available to solve community needs
  1. Give you a chance to "give back".
People like to support community resources that they use themselves or that benefit people they care about.
  1. Volunteering encourages civic responsibility
Community service and volunteerism are an investment in our community and the people who live in it.
  1. You Make A Difference!
Every person counts!

Everyone knows that volunteering benefits the place your are volunteering for, but did you know it helps YOU too?! 

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. 

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.

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!  

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!

Sometimes, all you need is to get out into the world, a re-charge. Exercise, fresh air, sunshine, and a little wildlife  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.

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!

So you have decided to volunteer, here comes the hard part! WHAT ARE YOU GOING TO DO?! Helpguide.org has offered a list of places to look for opportunities:
  • Community theaters, museums, and monuments.
  • Libraries or senior centers.
  • Service organizations like Lion's Club or Rotary Clubs.
  • Youth programs, sports teams, and after-school programs.
  • Historical restoration and national parks.
  • Places of worship, churches, synagogues.
  • Online databases like PHA (hint, hint!!).

They also have some things to keep in mind while you volunteer:
  • Ask questions. Make sure the organization is looking for your skills, and that you are looking for that opportunity.
  • Make sure you know what is expected. Know who you are volunteering for, and understand what they want. Know what time commitment they want. Start small, DON'T OVER DO IT!
  • Don't be afraid to make a change. 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.
  • ENJOY YOURSELF! 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!

So join me, be selfish! You can definitely make your like better by helping others do the same!

There are so many ways to help the pulmonary hypertension community, and many of them don't require you to leave your home.  Go to www.PHAssociation.org/GetInvolved for ideas and information!

World Volunteer Web. "Benefits of volunteering". October 19, 2005. www.worldvolunteerweb.org/resources/how-to-guides/volunteer/doc/benefits-of-volunteering.html
Helpguide.org. www.helpguide.org/

Friday, April 4, 2014

National 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.

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?

The Dastardly Disease ~ by Merle R. November 2010

I used to be healthy; I used to be strong,
I used to work most all the day long.
And then it hit me without even a clue
I wasn't quite sure just what I could do.
I saw many doctors and then all those tests
I was diagnosed with IPAH and you know the rest.

Pulmonary Hypertension the dastardly disease
It’s rare with no cure and progression will be
It affects the right side of heart – the lungs big time too
Those arteries get constricted and give out on you.
It’s so complicated; makes it so hard to breathe
With having this dastardly pulmonary hypertension disease.

Shortness of breath are symptoms at first
And sometimes it feels like your heart just may burst.
That weight in your chest, fast heart beats oh my
And walking too fast may just make you cry.

Some may get dizzy, or maybe pass out
Some are so tired - what’s that all about?
Some cannot work and don’t understand why
With little exertion they falter not fly.

Some have edema, that swelling so bad
Retaining that fluid just makes one so sad
Some may have chest pain and may have blue lips
This disease is too serious and needs to be nipped.

Some may have Scleroderma, Sleep Apnea or HIV
Lupus, Raynaud’s Phenomenon or maybe COPD.
There can be some causes or no cause at all
That’s when our ph doctors need to make the right call.

We cut back on salt, smaller portions for meals,
Nutrition’s important and helps us to deal,
We deal with life changes a whole new life style
Remember it’s doable – we'll be here awhile.

Many will ask when not feeling too well
How do I cope, how do I dwell?
Do not despair and let me just say
There are treatments out now – with more on the way
With hope and with faith we have a good chance,
To fight this disease and maybe then dance.

Too many doctors; some specialist too
Do not understand what this ph disease can do
Luckily though and I praise God on high
There are ph doctors and nurses who do know the why
They treat us with wisdom and caring that shows
I thank them so much and I just hope they know.

They schedule those testings they start off real slow
An echo and blood work and others you know
A six minute walk, many PFT’s, oh gee
We scurry, we’re dazzled, we come then they see.

You may have a CAT scan, a bron-chos-co-py too
And there could be several others they may ask of you.
And then the right heart cath the gold standard of all
This proves the diagnosis is proper – they made the right call.

Some take an oral an inhaled or such
Some with IV’s and more, oh, oh so much.
Revatio, Adcirca, Letaris, Tracleer,
Ventavis, Tyvaso are a few that are here.
Then Veletri, Remodulin or Flolan may do
And some of these meds are almost brand new.

A hose in the nose; a tube in the chest
We struggle; we strive and hope for the best.
It is very doable this dastardly disease
With research abounding, there’s hope – so let’s breathe

Those researchers out there, those researching now
How can we help you, with what and the how
We’re counting on you to brighten our life
You give us more hope to end all this strife.
We’ll give you some blood or whatever you need
And hope for a cure of this dastardly disease.

The cost of these meds is abhorrently high,
We suffer, we struggle, oh my how we sigh.
Some insurance companies won’t give us a dime
The government too in their wisdom declines
Then say they will help – but they have special rules
Most are careless and thoughtless and actually cruel.

There are specialty pharmacies and pharma reps too
With guided persistence they know what to do,
They tell all those doctors those specialists out there
About the ph meds; how they need treated with care.
Some have special nurses and advocates now
Who teach the new patients the why, what and how.
They treat us so special it’s learning one on one
They do have support for us, their work’s never done.

There’s a ph community it spreads far and wide
We meet in some chat rooms and support groups with pride.
I've made many phriends and I value them well
Unfortunately though, and I do have to tell
I've lost ooh too many, that hurts thru and thru
This dastardly disease can do that to you.

With our phamily support system we’re able to cope
We share with each other, there is always hope.
Hope for a future, hope for a life
Hope we’ll endure without too much strife

Although it’s not cancer the symptoms may be
As bad, sometimes worse than that horrid disease.
PH is progressive and can cause us much pain
We must not let fear grip us, there’s still much to gain
As mentioned before and remember this now
Pulmonary Hypertension is doable – we’ll be here a while.

Let’s take a deep breath; so slow if you please
It can strengthen those lungs with this dastardly disease
In through your nose and out through your lips
Slow is the key – please remember that tip.

And last but not least, remember to smile
As smiles are contagious you see
And when you feel down; and bring on a frown
Turn that frown upside down just for me
Smiles make us happy and will help us cope
With having this dastardly pulmonary hypertension disease. :o)

PH Poem ~ by Catalina L. 2006

~To all of us who are dealing with this terrible disease, may there soon be a cure~

You came into  our lives when we least expected it.
Because of you we are weak.
Sometimes unable to speak.

You are such a threat. 
Our hearts throb and we even sigh.
But it doesn't mean we love you!
We are just trying to catch up with our breath.

We think of  you night and day.
We wish you would go away.
We're stuck with you no matter what.
If you only knew the pain you have brought
You're not innocent or pure.
And right now there is no cure.
But we will not give up hope you see.
One day a cure there will be.
Just as easy as you came into our lives.
You will always come
But will not stay.
And we all hope and pray for that day!

"Breathe" ~ by Laura G., September 2013

Pumped full of life and this is true

The only breaths I have are few

The medicine runs through my viens

The best days I have are when it rains

If it's too cold outside my lungs are tight

If it's hot they just dont feel right 

It's so scary when you lose your breath

I just wonder how many these lungs have left

I'm few of the lucky ones who can walk around

Without an airtank dragging them down

I'm still really lucky if I haven't already mentioned

But it really sucks to have pulmonary hypertension