Aside from some close friends and family, I never really told anyone. It was embarrassing. I was ashamed. 4 years ago when I was going through the diagnosis phase, my health kept declining. I was losing weight, almost every time I ate something I'd feel nauseous, my joints were getting so inflamed that I became wheelchair bound. When people asked what was wrong, I'd say, "Oh it's just a soccer injury. I tore a ligament in my ankle and I need to stay off it for a while." Which was true, I actually did this to my ankle. It just so happened to coincide with all the other issues I was having so it was much easier to tell people it was because of soccer than "I don't know. We're trying to figure it out." I really HATED being confined to that wheelchair. I felt helpless, depressed, angry, frustrated...pretty much all the feelings you could imagine. What normally takes a person seconds to walk from their bed to the bathroom, would take me 5 minutes. My legs wouldn't straighten and when they did, it was so painful. I saw an orthopedic surgeon because of the torn ligament in my ankle, but he was concerned with the fluid build up in my knees. He said I looked like I walked like a person with MS or RA, but didn't have all the other symptoms. I remember when he took out that footlong needle to draw fluid to figure out what was going on. According to my husband, I turned completely white and looked like I was going to pass out. I was freaked. When I got my diagnosis, he said it all made sense.
I went to see my mom's GI doctor who was pretty sure I had UC based on all the information I had given him. More blood tests. But when I became confined to that wheelchair, he decided to just do a colonoscopy right away. That was a "fun" memorial day weekend. While everyone else is out drinking and having fun, I got to prep for the procedure. I will be forever thankful to my friends who came and took care of me while my husband had to work. They sat on the couch and kept me company while I chugged down the most disgusting liquids ever. They wheeled me to the bathroom and helped me stand up just so I could sit back down on the toilet (and came back to help me get back in my chair). I really did feel helpless.
When I woke up after the colonoscopy, the doctor told he was so sure it was UC, but after taking a look inside, there was so much damage to my guts (bleeding ulcers, polyps, etc), he said it was Crohn's disease, another type of IBD, but this one isn't confined to just the colon. It was everywhere. While most of the disease is focused in my colon, because of the other locations in my intestines, they call it Crohn's colitis. Mine was severe. The doctor prescribed me Prednisone to start (for a few months) and then wanted to put me on Humira (I ended up on Remicade instead due to insurance issues which was stupid and a whole other story).
The prednisone allowed me to walk on my own again within 4 days. It was my miracle drug. The downside, weight gain. And lots of it. Even 4 years later, I'm still trying to get rid of it. But I'll be ever grateful to it for getting me on the path back to my health. The Remicade has kept me in remission the past 4 years. I have little issues here and there, but nothing to land me back in the hospital or put me out of commission for a while. I have yet had to go back to using a wheelchair and I hope to keep in that way.
I got an email from a friend who thanked me for sharing my story. She said it motivated her to call her doctor and get checked out as she'd had some of the symptoms I had. Even though it was hard for me to finally push that send button and send off the email, I'll be glad if it helps even one person (though my husband says it should be five).
This morning at training, I was nominated for the Spirit Award this week because my teammates felt I was brave for telling my story. I'm still not sure how I feel about sharing my story, but, while I figure my feelings out, I have a cool orange cape for the week to wear everywhere and help spread the word about IBD.
Thanks for listening. And should you feel like supporting my fundraising goal to help find a cure for this silent disease, here's the link to my page: http://online.ccfa.org/goto/deborahclark
No comments:
Post a Comment