C-O-U-R-A-G-E

I feel like I have been to the Wizard of Oz to receive my badge of courage. While a lot of people have trouble looking at the bright side or weathering the storms, somehow I got lucky and just seem to be strong when I need to be. Don't get me wrong, I have my moments just like anyone else with a chronic illness. I sometimes just have to be angry or cry my eyes out, then I just pick back up and go on. I was thinking the other day that the word courage can remind us of a lot of things.

C is for caring and concern. This to me can be for yourself and others. I have to be concerned about my own health and how I take care of myself to care for my family. Also, with PH and lots of other illnesses, your family, friends, doctors, etc. care for you.

O is for optimism. Without a positive outlook on life, people are never as happy as they could be. I am not saying that this is always easy. I tend to lose sight of the positive on my third or fourth trip to the bathroom thanks to the side effects of meds. I try then to find the humor in the situation, as in, "Wow, I am getting to read a lot of this book!!"

U is for the unexpected. Try to be ready for it, and thank God when he pulls you through.

R stands for ready. Be ready for the fight of your life. People with PH are sometimes sick for a long time before they are even diagnosed. Then after dealing with all the tests, they have to endure the stress of side effects of medications. All the people I have met thus far in the PH community are so up for the fight, it's amazing.

A is for answers. We all want answers in life, yet with PH there are no concrete answers as to why people get this disease, especially for the people with idiopathic PH. I was told I have this because my lupus caused it. Yet, no one can tell me why I have lupus. Also, there is no cure yet, so we have to be courageous until that day comes.

G is for -- lets be honest -- gross. The side effects we PHers have to tolerate are just that, gross! I despise a headache, and the GI symptoms (I won't even go into details about that!). I am sure that others have their own stories to tell!

E is for education and expectations. I think about all the support groups and people out there trying to spread the word about PH to patients, family members, medical professionals and the public. I think about why we're all so focused on education...because we all expect that one day it will come full circle in the form of a cure.

I find that this combination of thoughts just leads me to be hopeful; that one day no one else will have to go through all this. I worked in the medical profession and have seen so many wonderful things, that it is impossible for me to believe that this can't be over come as well. Tell me what courage means to you!!!

God Bless, JennRN

Living Breathless

So last May I was going along with life. Working part time as a registered nurse and taking care of my family. This family consists of my three year old daughter, two at the time, and my wonderful husband. Life then was breathless, because God had given me so much. I had overcome my Lupus symptoms enough to be able to be a momma, what I always dreamed. Then I realized I couldn't breathe when I did certain simple activities, like walking into work. So off to the doctor I went. The following week was a whirlwind and left me just as breathless as life itself. I was diagnosed with pulmonary hypertension on Friday of that week. Life as I had known it would never be the same.

Even with all the changes that my family and I have had to make, I can still honestly say that I have a wonderful life. I have life. I have the breath I need to keep living and to watch my baby girl grow up. I may not be here for as long as I would like, but I get to live my dream of being a momma. I can no longer work as an RN in the same unit that I was working in. I never thought that I was meant to be a stay at home mom, but I am learning with everything else that this is a blessing in itself.

Being breathless has allowed me to really see things for their beauty. I love to plant flowers, sometimes it’s really hard for me, but to see them bloom in the sunshine and to be able to enjoy this is one thing that I have learned not to take for granted. I can't rake leaves, or mow grass, but I can feed the birds and watch the squirrels. I am trying to teach my daughter to enjoy the small things like this. It is so much fun to watch her giggle at the squirrels when they chase one another in the yard.

I am thankful that I have been diagnosed in the generation where science and medicine have come so far. Twenty years ago I may not have had a very good prognosis. With all the research and medications available I will be able to live longer, even breathless.

With God's Love JennRn

Good health because of pleasant words?

It is seven in the morning. I have just returned from dropping my grandmother off at the airport. Since my husband was at home in bed, I was able to leave my one-year-old daughter sleeping in her crib. I decide to change her diaper before I crawl back into bed. The hope is that a new dry diaper will extend how long she sleeps. Every extra moment of rest is essential for us as PH patients. I lift her from her crib onto the changing table. As she lies on the changing table, she begins to babble. She is talking with her eyes completely closed. She is talking before she wakes up. She does wake up for a brief moment after I change her diaper, but settles back into her crib quietly.

I wonder if this scenario can be applied to our health in an analogy. She talked before she was awake and it was her talking that woke her up. Similarly, can we as patients talk ourselves into good health? Can our talking lead to being healthy? When I refer to “talking” I am suggesting positive self-talk. There is a proverb that states, “Pleasant words are as a honeycomb, sweet to the soul, and health to the bones.” Is the proverb correct in stating that pleasant words can have such a healthy benefit? I would apply “health to the bones” to mean good physical health in our bodies, not just in our bones.

Personally I believe this proverb to be true. Positive self-talk helps reduce stress. I know there is a link between stress and PH. Doctors have told me this and I have experienced it. If I go through a week that has several stressful events, about three days later, I will experience arrhythmias. Positive self-talk is an antidote to stress. I am in better health when I choose “pleasant words.”

There is an article on WebMD titled Stress and Heart Disease that more closely looks at this theory. The article includes information on signs of stress, ways to cope with stress, advice on how to keep a positive attitude, and ways to reduce stressors. The article also has specific advice on eating, sleeping, and relaxing that can help reduce stress. Please keep in mind when reading this article that it was written for heart disease in general and not just PH patients.

I am not suggesting that if your PH is on a decline it is your fault because you lack positive self-talk. To go back to the analogy, every time my daughter talks it does not mean that she is going to wake up. As you can imagine, she talks plenty when already awake. This post is to suggest that if you do not consciously look at the struggles of this disease with pleasant words, it would be worth a try to do so. I understand that having this disease can wear our attitudes out. You don’t even have the energy to shower much less the energy to keep positive. Like every PH patient you’re probably tired of hospital stays, bad news from doctor visits, and funny looks in public places. Hopefully though, after reading this, you can exert a little more energy for pleasant words. They are as a honeycomb, sweet to the soul, and health to the bones.

Holdfast, a cure is on the way!

On Acceptance (One Breath at a Time)

Today I was so out of breath walking to the library on my college campus in the wind and cold that once I got inside the doors, I just collapsed in the entryway and sat there on the floor panting for awhile. I watched people come and go through the doors, some giving me looks, others just passing through. I used to be embarrassed about things like this… sitting down in the middle of a store because my legs hurt from walking, or running into class late, panting so loudly I’m sure the whole room could hear.

I’m not embarrassed anymore, maybe because I’ve toughened up to the weird looks and snarky comments. Still, sometimes it gets to me a little. I’ve had people tell me my central line is gross. I’ve had guys break off relationships with me because they found out I couldn’t have kids. I’ve had friends turn away at the beginning of a friendship once they find out I could die because they don’t want to get attached. It’s like, “Hey man, I get it…” but at the same time, I can’t help feeling hurt. I didn’t ask for this disease. I didn’t ask not to be able to have kids, or to have an IV in my chest, and I sure as hell don’t want my life to be cut short because of something completely out of my control.

But this is our reality. Those who want to judge us and put us down for having pulmonary hypertension aren’t people we want in our lives anyway. I hope all of you are able to find people who love you and care about you despite your disease. I know I have an amazing group of friends and family that are supportive, loving, and understanding. I don’t know what I’d do without them really. My boyfriend once told me that having PH is kind of like a “good people detector.” The ones who are genuine and caring will stick around, while the shallow jerks will just walk away.

Don’t ever apologize for your position. When people tell you that you’re gross or weird, just ignore them, or have some kind of witty comeback to whip at them. I refuse to let their words bother me anymore. When it’s hard you can always turn to your friends and family for support. Don’t feel badly about stopping for breath…-even if it means sitting down in the middle of the grocery store. Don’t feel badly if your pump alarms in the middle of a lecture or performance. Don’t let uninformed people get you down, and if they are being really rude, maybe the best comeback is to explain to them what pulmonary hypertension is in a really nice way… they’ll probably regret how rude they were. Maybe next time when they approach someone they won’t be as offensive, and then there’s one more person educated about this disease! Accepting PH in my life has been challenging. For most of my journey with PH, I’ve tried to deny that I have it, and always felt embarrassed and scared trying to explain it to anyone. By trusting myself I was able to get to the point where I have everything I need to take care of myself: family and friends who support me, medical professionals I trust, and an inner strength that keeps me afloat when strangers are looking at me funny. Once you accept yourself and the new you with PH, it is strengthening and makes daily events less stressful. Stay strong everyone, and don’t apologize for what you need to do to get through the day!

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.