Art & Coping: Relieving Stress Through Creativity

Mimi Jordan

“With PH, you can get a sense of feeling not as worthwhile; art has given me a feeling that I can still do things. It is something you can share with others, art of any type is a creative work, and is a positive and helpful thing to do.”

Mimi Jordan has found a way to turn the hardships of living with pulmonary hypertension into something positive, art. While Mimi has always been an artist, due to PH and limiting physical activity, she has found more time to focus on her painting. Mimi paints on average four-five hours a day, five days a week, or whenever he schedule permits. She states, “It is easy to become negative about the things you cannot do living with PH, you need to find some way to cope in a positive way.” Painting, for Mimi, has become a meditative experience and an important part of her PH. She believes, “you need to find something positive, and creative, art has given me a feeling that I can still do things.”

Unfortunately, due to her physical limitations, Mimi is unable to visit museums or art galleries; however she enjoys browsing various art websites online such as One Art World and Saatchi Online. In addition to this, Mimi has a site of her own! Take a look at Mimi’s paintings.

BreAnn McFarland

Similarly to Mimi, BreAnn has also found comfort in art work.  Always being interested in art, BreAnn quickly realized how great a coping mechanism it was for dealing with her PH, and migraines post lung transplant. As a child, BreAnn possessed the talent for being able to draw something by just looking at it. After diagnosis, she was no longer able to keep up in school and had to switch to homeschooling. Fortunately, BreAnn was given the gift of a lung transplant that rid her of PH, unfortunately, the side effects of the medication she was placed on were chronic migraines. In the process of enrolling into college, BreAnn needed an activity that could get her out of bed and rid her depression. She soon realized that school could not become a part of her plan anymore, and became a full time crafter.

PH bracelet made by BreAnn

BreAnn makes stationary ranging from cards and boxes, to gift bags and jewelry and even temporary tattoos! She is also an avid Photoshop user. She states, “doing what I like to do every day gives me a reason to get up. I love more than anything to make things for people.” Through crafting, BreAnn has also acquired an online family from sites such as Facebook, Paper Craft Planet, and Crafts digital art center (CDAC).

Although she would like to, BreAnn is unable to visit museums or art galleries due to her lack of mobility caused by the migraines. Even though she is unable to enjoy art in those ways, she expresses her feelings on the benefits of creativity and art work. “You need some way to express what you’re feeling creatively as a way to get your feelings out. Great art has come from bottled up emotions. Art is not something you have to share, but something that helps!”

Brandi Stickney

Although Brandi has always been interested in art, she more recently has become interested in taking photographs both for herself and for others.  Upon diagnosis of PH two years ago, Brandi realized that photography was something she was really good at, and an activity of little physical demand. Brandi spends about 2-3 days a week, and around 20 hours a week on her photography. She has found children her favorite subjects to photograph because of their innocence and realness. Brandi states, “it makes me feel like I can do something that is in my control, because I cannot control the way I feel.”

Brandi frequently enjoys visiting museums and looking at other people’s art work to get inspired. For others who have not yet found that perfect coping mechanism, she shares “having a hobby you really love gives you a sense of control in an otherwise chaotic situation. It keeps your mind off of the things you cannot do.”

Breathing Fire: PH and Anger

By Kiara Tatum

Have you ever gotten so angry that you wanted to hit something or throw something?  Have you ever been so mad that you gave a tongue-lashing to someone?  Have you ever been so angry that your body felt so hot?  I’m sure I’m not the only one who’s been there, but we have every right to feel angry.  We have a chronic, incurable, life-threatening illness that has drastically changed our lives.  

I get mad at people who just don’t get it; I’ve been mad at someone for staring at me while I’m walking with my oxygen tank.  I’ve been angry at my mom when she asks me if I’m okay; I’ve been mad when I see another medical bill I can’t pay.  I get mad when I can’t walk at the pace of other people; I get angry when I have to cancel plans with friends.  I get mad when I can’t focus.  I get mad when I don’t have any more spoons left; I get angry when I have to spend a day in bed.  I get mad when I can't go to the club with friends.  There are probably more than a 1,000 things that cause me to get angry about my PH and how it affects my life.  

But behind that anger is sadness and depression, and I’m most angry with having PH and my body.  The pressures and frustration of having a chronic illness build up inside.  It’s so hard to have an illness where I can’t take an antibiotic to get rid of it in 10 days.  I wake up and I’m still in the same body that I fell asleep in the night before.  I’m still sick.  I get frustrated when I know that I used to be able to do something and I no longer can do it since my PH symptoms started.  I have PH.  It hurts my soul, and I cry out sometimes.  But it’s okay to feel anger, sadness, and hurt.  

But just because we have PH, doesn’t give us a free pass to explode on family, friends, or complete strangers.  My sister once told me that it was hard to live with me because she didn’t know how I was going to be from moment to moment.  It’s hard to deal with the anger, so use some of the outlets available to us to deal with it such as posting on the Generation Hope Google email group or Generation Hope: Young Adults with Pulmonary Hypertension Facebook page or share at a local support group meeting.  We can also talk to a friend, family, or professional; write in a journal; pray; listen to music; or punch a punching bag.  Continue to have hope and be positive.  Also, remember that we are not alone with this illness and anger.  A cure is burning up!!!

Getting Excited For Conference!

By Melanie Kozak

How would I describe the International PH Conference? It’s like going to a family reunion, only it’s with the relatives that you like.  It’s the strangest yet best feeling ever.  You get to meet all of your friends that “live in the computer”.  You also forget that people normally look at you as disabled because when you look around, you see that everyone is the same as you.  It’s overwhelming in a great way.

I get very inspired by the patient led sessions; it’s so nice to hear other people’s stories that are so similar to mine. It starts to make me feel less alone and I enjoy sharing my story as well.  It shows me that PH may be a rare disease, but that we are not only a community but a family.  It reminds me of why I fight every day.  It re-energizes me to go out and start trying to spread awareness for PH and fundraise.  It also reminds me that I need to accept my bad days and continue to be positive.

The doctor led sessions are amazing.  My favorites are the ones on the upcoming treatments.  I love to hear what other options may be available soon.  I was diagnosed 14 years ago, and there was only Flolan.   It excites me to watch more and more treatments get approved over the years.  It’s just the best feeling.  I was given six months at diagnosis, and then two-five years after that.  I know it’s a story we all hear, but seeing these new medications makes me feel like this disease is going to be cured in my lifetime.

This will be my fourth conference, and I get more involved each time.  I volunteer, I speak, I help lead a support group and I always love to model.  I remember hearing in 2008 about Gleevec, and a few months ago I got the opportunity to actually go speak to the scientists, doctors and researchers of the company! 

This year I am especially looking forward to meeting up with Generation Hope friends.  It is going to be great to speak with other people in my age group that have similar challenges as a young adult.  I am happy to say that I am a panelist on the “Making PH Sexy” session, which is all about managing relationships while having PH.  I think it’s going to be a great panel with lots of interesting points of view.  Hopefully the patients in the room will really get involved and have fun with this topic.

I also love the fashion show.  Silly as it may seem, it’s always fun to model in the show and watch how everyone else either hides or accessories their pump or oxygen.  It just has so much energy.  I especially love to see the children model.  It is great that they are able to do this and not be afraid.  Here is a teaser - this year I will be wearing my PH awareness outfit and a very special outfit, but you’ll have to be there to see it!  Okay if you are not, I will post pictures afterwards.

 As I write this I feel like I could get up and start packing.  In my eyes conference can’t come soon enough!  It gives me a high being around so many other patients.  It’s great to get ideas from them about their support groups and many other things.  The only down side is that conference only comes every OTHER year.  I would love to have a conference every year.  It truly makes me sad when conference comes to an end. 

Hopefully I will get to meet all of you next month!!!

The importance of PHriendships

When you deal with the onset of a chronic illness you are
forced to confront your relationship with yourself: your expectations of your future and work/life balance. For me pulmonary hypertension revealed greater meaning in my connections with others too. I realized just how lucky I was to have great friends who stuck by me through my new set of circumstances. I also truly valued those new relationships I formed, many of which were born out of a common experience of ill health, or indeed pulmonary hypertension itself.

Like many patients, I initially struggled to comprehend my diagnosis. Friends knew I was very ill but also couldn’t quite grasp the seriousness of what it entailed. Part of this was due to the fact that we were all in our twenties. We were not equipped to deal with serious ill health at that point as, for the main part, we had not been exposed to it.

But my friends and I gained understanding as time went on. For me, a good friend was someone who understood when I was tired and who knew that I might need to change my plans at the last minute. There was Anna, who knew that though I could dance in my seat at a Madonna concert, but couldn’t walk the steep hill from the concert venue! There was Tom who flew to San Diego to be there for my PTE surgery and who gave me a place to crash whenever life at home became too much.

I also developed relationships with other people with PH. One of those was a mother (also called Sylvia) from Northern Ireland who I’ve never met in person but versed me on everything I could possibly need to know for life before and after PTE surgery. We still check in on each other using that shorthand only used by those people who have been through such similar life-altering events. At PHA’s last conference I was telling my story to others at a support group meeting when another patient jumped up and exclaimed, “Oh my God, you are Sylvia, the Irish girl!”
That was Amanda and it turned out she had her operation a week after mine and had heard encouraging tales of how well I had responded to surgery. From that point on we became firm friends and I even visited her in her hometown of St Louis this year. (see photo)

And there are so many others I’ve met online and in person, people who I would never have known were it not for our connection to PH. They are always ready to share encouraging words or offer advice.

My old friends remind me of who I was before my illness while my new friends give me inspiration for who I can be after serious ill-health. Both are equally important and I couldn’t imagine the last few years without them.

How have your friendships developed and changed since your diagnosis?

Staying Active with PH

With summer just around the corner I am so badly itching to be outside again. Summer also brings an itch to be more active. Once the frost thaws and the sun is scorching the black top I know I will want to be riding my bike, taking my dog for longer walks, chilling in an inner tube on the lake, walking around town with friends, and hiking through new parks. PH has severely restricted my activity level over the years though.

I have this passion for the outdoors that helped define who I was. I grew up outside playing in the mud, swimming every day in summer, snowboarding and ice skating in winter and hiking through the beautiful colors in fall. Before I was diagnosed I remember things getting harder. I couldn’t ride my bike as fast as my sister anymore. I was no longer the ghosts in the graveyard champion of the neighborhood. After I was diagnosed, things got really bad. I could hardly toss a ball around with my sister without getting severe palpitations. I was also adjusting to the responsibilities and difficulties associated with having an IV medication. I didn’t want to go outside anymore; all I wanted to do was sleep and lay in bed.

But then something happened; my medications began to help. I was able to start walking around with my friends again. I could ride my bike, just at a slower pace. As I did more and pushed myself to get out of my depressed lump on the couch, my whole attitude changed.

I think trying to stay active is a big part of feeling good. Over the 10 years of having PH there have been a lot of ups and downs with how much activity I can handle. Now some days I am so tired and short of breath that getting out of bed is even hard. I tell myself that I’m going to do something like write in my journal or catch up on some of my favorite T.V. shows on these days. You can totally allow yourself the bad days. On the days you feel better though; sometimes you need a little push to get going.

The most important thing is to know your limits. This is best discovered through experience. It is extremely important to listen to your body because how you are feeling is the real judge to how much activity you can handle. There are days, however, where I hardly have symptoms from PH but I am feeling down on myself or maybe experiencing some nasty side effects from all the meds. I find that if I push myself on these days to get out of bed and make myself a big home cooked breakfast I will be feeling better and more motivated to get out of the house and be more active.

Everyone with PH knows that those precious days where we aren’t very symptomatic should not go to waste! So what else can you do to be active? Perhaps try some light exercise. Maybe take a yoga class. This could also be extremely beneficial to relieve stress. I took a tai chi class for 2 years and I must say it was incredibly stress relieving and it really helped me center my breathing and become even more aware of my body.

You could try doing something a little less physical like baking or cooking. There is always the option of trying some gardening or maybe taking your dog for a slow short walk. You could walk around at the beach only going waist deep into the water instead of swimming, or perhaps play in the sand with your kids or nieces and nephews. Even just getting out of your house and having dinner with your friends would be much better than staying at home depressed. Do what you can, and have fun doing it!

There is also the option of Pulmonary Rehab. This is for people who are still symptomatic even with treatment. This program aims to make you feel less symptomatic for a better quality of life and can help you tone your muscles and strengthen your breathing. If this is something you think you could benefit from definitely consider asking your PH specialist about it.

I think staying active with PH can really boost your spirits and help you feel better. Just take it slow, know your body, and don’t feel bad if you can’t do what you used to. It’s important to accept where you are now and be happy with that, even if it means just relaxing for a day. Does anyone else have ideas for staying active with PH? I hope you all have a fun, active and healthy summer!

We are hope.

What does it mean to have pulmonary hypertension? I’m sure we all remember what it felt like when we were given our diagnosis. After weeks, or sometimes months of tests and doctors, as we sit in a small enclosed hospital room, we are finally told what is causing our shortness of breath, chest pain and fatigue. “You have pulmonary hypertension.” Well what the hell is that?!? I had never heard of this disease before, I had no idea what it was, or how much my life would change after that moment. Every day we are faced with challenges now, stairs seem to loom in front of us, we have to ask our friends to wait up at the mall, and maybe we are saying no to going out because we just don’t feel up to it. Floods of meds and new ways of life pour down over us, and we become nurses and experts in PH ourselves. We have to, and we all do so with the bravest faces.

So what does it REALLY mean to have pulmonary hypertension? Well, “Pulmonary hypertension is high blood pressure in the arteries of the lungs that can lead to heart failure.” Jeeze, how scary does that sound? And there are websites out there with wrong or out-dated information that are WAY scarier than that! But that still doesn’t explain what it means to have pulmonary hypertension. Having PH makes you a warrior, a rock amongst the waves. You are a strong individual, who despite being dealt a bad hand, has come through it and still finds a way to smile everyday for just being here. People will put you down, people will leave, and others will tell you there’s something wrong with you, that you are inadequate in some way. NO you aren’t. You are more than adequate. You are over-adequate. We put up with incredible struggles daily just doing regular things. I have some people approach me asking what my Flolan pump is, or what that plastic looking stuff is on my chest. I always explain it to them, as patiently as possible, (but it’s become a pretty monotone, emotionless statement). “I have pulmonary hypertension; it’s a rare incurable disease. I have extra tissue in my pulmonary arteries so my heart has to work super hard to pump out blood. I’ve got a permanent IV in my chest that delivers meds to me 24/7 and without it I might not be alive today.” Most people respond with “Wow, I don’t know how you go through all that… I could never do that.” I just smile and say thank you, I’m making it through. We are strong. We are much stronger than those who put us down, and we are plenty strong to kick this disease.

Hope is so important along with our strength. I know there was a time when I didn’t have hope, and it’s not a good place to be. Why act like you are dead when you aren’t, you know? We are amazing people, amazing young adults. Don’t forget that. We’re dealing with this illness in the prime of our lives. Some of us are just starting families, or just settling into careers, or starting school, excited for our future. We have all these dreams and ambitions, and then BAM, we have pulmonary hypertension. And that threatens to drain us of our dreams and goals…but we can’t let it, and we don’t. We keep on fighting, because we have hope, and we are strong! And look at us! Many of us have surpassed our “life expectancy” rates by quite a bit! This is incredible, and it only makes every moment of life better, every bit of food taste fuller, and every sunset more beautiful. So yeah, I know how much having PH sucks, just plain out SUCKS. But we should remember every day that there is hope, that we ARE the hope, and the strength, and that as PH warriors, we will get through this.