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.

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.

Mama,
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.

April is Volunteer Month

Top 10 Reasons to Volunteer

10. 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.

9. 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!

8. Volunteers gain professional experience!

You can test out any career.

7. 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

6. It promotes personal growth and self Esteem

By helping foster empathy and self-efficacy.

5. Volunteering strengthens your community

As a volunteer you help:

Support families

Improve schools

Support youth

Beautify the community

4. 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

3. Give you a chance to "give back".

People like to support community resources that they use themselves or that benefit people they care about.

2. 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!

Source- UC San Diego. http://students.ucsd.edu/student-life/involvement/community/reasons.html

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!

Sources

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

Idealist. www.idealist.org/info/Volunteer/Benefits

Helpguide.org. www.helpguide.org/

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

Nutrition Month

It’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).

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):

Low Sodium: 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.

Dairy, Meat and Fats:  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.

Fresh Foods and Fiber: 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!
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.

What are some of your favorite healthy dishes to make? Share in the comments below!

Written by Kimberly Smith, PHA Intern

Rare Disease Day 2014

Across 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 1 billion people are affected by rare diseases!! That is staggering to think about! About half of those affected are children.
 
So what exactly is a rare disease? 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.

Symptoms 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.
Misdiagnosis is a major problem for rare diseases, often because a common symptom will hide the underlying disease.  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.

What is Rare Disease Day? 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. Last year, in 2013, more than 70 countries participated, with more expected this year. This year’s objective is “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.” 

Join Together for Better Care! 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.
Because 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!

Now, how can you get involved? There are several ways YOU can get involved, and increase awareness… without even leaving your desk!

            Become a Friend- www.rarediseaseday.org/become-a-friend/

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!

            Raise and Join Hands- www.rarediseaseday.org/join-your-hands/

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!

            Tell Your Story- www.rarediseaseday.org/tell-your-story/

Tell us how your life has been affected by a rare disease, share words of encouragement, or an uplifting story.

Download and Share Communications Material- www.rarediseaseday.org/get-involved-download-our-communication-materials/

Social Media-

            Facebook- www.facebook.com/rarediseaseday

            Twitter- www.twitter.com/rarediseaseday

            YouTube- www.youtube.com/rarediseaseday

            Flicker- www.flicker.com/rarediseaseday

            Thunderclap- www.thunderclap.it/projects/8543-rare-disease-day2014-feb-28

                                    Wait… what’s that?!

Share a single message (In this case “Today is #RareDisease Day, the day to put rare diseases in the spotlit! Show your solidarity today http://thndr.it/1fkAYmz”) simultaneously in one THUNDERCLAP of awareness!

Want to learn more? Go to www.rarediseaseday.org for more information on Rare Disease Day, for a list of sponsors, and to become involved.

Living With A Holey Heart And PH

As 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.

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.

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.

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.

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!

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.

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!

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.

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.

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 Eisenmenger's Syndrome (ES). 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!

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.

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.

~Colleen S.