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!