Hello my name is Alycia and I have Churg-Strauss Syndrome. That is honestly how I have defined myself for the past 6 months.
Although it is true, I do have CSS, I know my identity is not rooted in it and I am still on a journey to figure out how to live with a life-threatening disease while not letting it define who I am. I have been many things in my 27 years on this earth. A child, a daughter, a sinner, a student, a friend, an enemy, an alcoholic, a blood-bought born-again daughter of the King, a wife and a mother.
Unfortunately, lately I just feel like the girl with that crazy disease that has no medical cure. I struggled about what to say when I was asked to write this blog post. On one hand I was honored on the other…unworthy? I wasn’t sure how uplifting my words would be, because I honestly haven’t felt very uplifted myself.
The last 2 years have been an intense and terribly frustrating roller coaster! In the second trimester of my pregnancy in 2012 I developed severe asthma and joint pain. I was told this was a temporary condition brought on by my pregnancy and it would most likely subside, After I gave birth.
Well it didn’t. In fact it got much worse. After many emergency room visits, doctors and specialist appointments I was finally hospitalized in November 2013 due to the severity of my condition and the fact that nobody could figure out what was wrong with me. I had giant painful purple lesions all over my body that were originally misdiagnosed as ringworm.
I was coughing up blood, I couldn’t taste couldn’t smell, couldn’t breathe, the list goes on. After 3 weeks in ICU and one week on life support with heart and kidney failure I was finally diagnosed with this extremely rare autoimmune disease.
Now this all sounds pretty awful, but you should know that the timing of this was impeccable. You see, not a single nurse or doctor in that hospital knew what was wrong with me and all the tests were inconclusive. But there was one doctor who had only been working at that hospital for 3 weeks in fact he had just moved here from Connecticut and he had seen my 2 in a million condition once before.
I truly believe God orchestrated all of that and many more little details most of which I am probably unaware of. I’m sure He is doing that on my behalf every day, but I don’t even realize it. It is easy for me to get frustrated that all if this had to happen and that I am stuck on these terribly potent steroids with very unpleasant side effects. Some days it doesn’t take more than a glance in the mirror to literally make me hate myself for being covered in big permanent scars and gaining 50 disgusting pounds beyond my control.
It’s being thankful that takes discipline. Thankful that I am alive, to watch my daughter grow up.
On days when I have zero energy to run around, after a 1 year old, I try to remember that I am actually one of the lucky ones because I can. The goodness of God never ceases to amaze me so long as I remember to see it. It’s always there.
Even though sometimes it feels like the only thing that’s relevant I know that I am not just that girl with Churg-Strauss. I am a wife, and a mother and I’ve got the best Dad in the whole world.
“God sees the little sparrow fall, It meets His tender view; If God so loves the little birds, I know He loves me, too.”