Shawna – EGPA: A litany of losses… and blessings
EGPA: A litany of losses… and blessings
“A heart attack?? Me? I am only 38! I am perfectly healthy. I work out every single day. I eat properly. I have a 2 year old who needs me.”
That was the beginning of the end. The end of my life as I knew it.
8 years ago, a medical school resident saved my life. She wasn’t happy with how quickly I was going downhill. She saw that my blood eosinophils were climbing to 70% and took it upon herself to find a specialist who would listen to her. The diagnosis: Churg-Strauss syndrome — also known as Eosinophilic Granulomatosis with Polyangiitis (EPGA). The prognosis? Not all that great, given the severity and targets of my disease. But I was alive. Barely.
The first loss was my career. Seven years spent in university to develop a career that I absolutely loved. Gone. I cannot work in my field with a prednisone-addled brain.
My energy was next. I could barely look after myself, let alone my very energetic toddler. So even though I was not working, my child was in daycare. I was suddenly a stay at home mom with a child who wasn’t home. Talk about an identity crisis!
Many friends have faded away. Some were afraid that it might be contagious (seriously!!). They weren’t interested in hearing about all of the difficulties I was having, trying to stabilize my heath. They couldn’t handle it when I needed to cancel plans at the last minute. Some drifted away naturally, as friendships often do. Some offered well-meaning advice that just made me feel worse about the situation, and more importantly, worse about myself. They just didn’t “get” it.
The loss of freedom was the hardest. The freedom to stay awake for an entire day without spending the next 2 days in bed to recover. The freedom to play with my child and run around at the park. The freedom to listen to the radio in the car while trying to concentrate on driving with my “pred head”. The freedom to not have to make choices like “Do I make dinner, or save my energy to read to my child at bedtime?”
Losses. Grief. Mourning.
Everything seemed to be about what I could no longer do.
Then I realized that I have but one real goal in life: “To stay alive so that my child has a mother.” That momentous shift changed my life. And brought many gifts.
That’s not to say that I am happy with having this terrible disease that I struggle with on a daily basis. I have pain, I have multiple organ damage, and I suffer with the side effects of the treatments. But I am here. I am alive. I am meeting my goal of being here for my child.
The complete lack of energy has forced me to look upon my energy supply as a precious treasure that I dole out in small doses to do things that are important – truly important – to me. Sometimes I choose unwisely and pay the price for up to weeks afterward. I try not to repeat those mistakes. I am also learning that for some things, the price is worth it – to have a little fun.
The loss of my career has provided me with the opportunity to pursue other hobbies and interests on a very limited level. I had always wanted to learn how to do pottery. I took a class in the mornings so that it didn’t interfere with my afternoon nap ritual. It’s a wonderful creative outlet that helps me train my brain to focus. And when I feel like I have no control over most aspects of my life, I am reminded that I am able to completely control a piece of clay (frequently resulting in unidentifiable but entertaining “art”). Yoga classes have also enabled me to better tune into my body and what it needs. This has helped on so many levels.
Out of necessity, I have adapted from a classic Type A personality to more of a B+. I am more laid back, although still frequently become frustrated with a lack of ‘productivity’. I am more understanding and accepting of others and of situations I cannot control. I can confidently say that I am no longer a perfectionist; EGPA has beaten that trait right out of me. I have FINALLY embraced “Good enough”.
I have learned not to place expectations on myself for exercise. I wake up, see how I feel, and try to do “something” active each day. Sometimes I explore the neighborhood on my bike, other times I walk or swim for a bit. Any amount of exercise is “enough”. Even if I don’t break a sweat, it is still “enough”. Sometimes I spend the entire day in bed, and simply rolling over is “enough” for that day. It’s quite liberating to not push myself so hard.
EGPA has given me the gift of time. I have time to sit in my garden and enjoy the beauty of nature. I love to listen to the bees as they busily visit all my flowers. My garden is a great place for my afternoon nap in summertime.
EGPA has given me the gift of walking my child to school every day that I am able. I can attend assemblies at school in the middle of the day. If I am feeling well, I do not miss any of my child’s activities or special events. I never would have been able to do this with my full-time job.
I have a wonderful circle of mostly post-diagnosis friends who provide tremendous support and a few laughs along the way. I have an incredible team of medical specialists and professionals who help me deal with the ongoing and new issues that frequently pop up. I am so proud to say that we are a true team, working together to make the quality of my life as high as possible for the moment I am in.
Time and time again, EGPA reminds me that I do not have control over what happens to me. Sometimes it seems that there is always something new (and bad) happening. One thing on top of the other; feeling like I never catch a break. I am learning that I only have “now”. If I live in the present, the future will take care of itself. I have learned that the fear of a flare is usually worse than the flare itself, and 8 years of experience has shown me that I CAN handle whatever EGPA sends my way. One step at a time.
Whenever I get down or discouraged that I cannot do all of the things I used to do or the things I now want to do, or belittle myself for not being able to be the wife and mother I want to be, I am reminded of one simple thing: I am ALIVE. Against all odds, I have survived. And might I say in some small way, I have thrived. My life is not at all what I had envisioned for myself, nor the life I worked so hard to achieve. But it is MY life; it’s the only one I have, and I plan to make the most of it.
Kevin Selig was diagnosed in January 2014 with Churg-Strauss Syndrome and fought a courageous battle against the disease. Kevin passed away on Saturday, June 21, 2014, at the Mayo Clinic Hospital in Jacksonville, Florida.
We in the CSS community were saddened by the loss of such a vibrant human being and reminded how our illness often goes undetected until too late. Glenys , a very brave CSS warrior, set us into motion to bring awareness to our disease with a challenge to raise awareness of Churg Strauss Syndrome by posting a story on the the 1st of every month in an effort to let the world know we exist and we want to help others obtain earlier diagnoses. Please share this post so Churg Strauss Syndrome and Vasculitis can become words that people know exist.
by karen in wonderland