Tuesday, May 19, 2009

In honor of May being Lupus Awareness Month (and because I have this stupid disease too) I will be posting essays and interviews with brave ladies who are fighting to live life to the fullest, despite having lupus.

Today Chicago-native Hannah Chaskin shares her story.




I don't remember what it's like not to have lupus.

I can't ever remember not being in pain.

Even in the years before my first flare, I'm told, I often complained of just not feeling well. "I don't know why, I just don't." My parents thought I was making it up to get out of school or social engagements. I had no other symptoms until I was nine.

After a horrible allergic reaction to shellfish, the story goes, I lost all mobility in my right hand. I don't remember the progression - I remember little snippets: I fell every time I tried to get out of bed, I couldn't open doors at summer camp, I was embarrassed and felt like an old woman because it took me a long time to stand or sit, and other kids made fun of me. I started keeping to myself. I'm told that one day, my dad came downstairs to find me sitting on the kitchen floor,
crying because I couldn't open the fridge. I'm also told that my brother tried to hug me and I screamed and pushed him away.

It took my parents a long time to explain to me that "chronic" meant I would never be truly
"better." I threw a temper tantrum, because that just didn't seem fair. But after that, I was remarkably calm. People call me brave, but that wasn't it. I just didn't understand, and I didn't want to upset people. I had solumedral drips at my house three days in a row then, with nurses who were not used to tiny nine-year-old veins. I was on immuran and cellcept, and methotrexate. When I was 11 or 12 I started on Cytoxan. I'd also had 3 kidney biopseys by age 13.

Because I was too embarrassed to tell my friends what was going on, I had almost none.

The Cytoxan didn't do much. Nothing really did. At this point - no one told me this, I just recently found out - I was 13 and they figured I was dead. Nothing was working. My kidneys would fail before I graduated high school. Then as a last resort, when I was 14, they
started me on Rituxan, still in its very, very early stages. And by some miracle, it pushed me into remission the summer between my first and second years of high school. My kidneys were functional and I was in no pain, apart from the permanent damage to my joints. I was even off
prednisone.

My kidney disease came back at the beginning of my sophomore year, and that was when the first bits of depression started, in realizing that this is how lupus works - I would feel better, I would get used to feeling better, I would relapse.

Now, my lupus has been erratic. I'm in a flare and there are days when I just want to give up, and other days when I feel like it will all be okay eventually. I'm finishing my first year of college now. I'm a creative writing and English double major, with a religion minor. Because my immune system is so weak from the meds, I've had three sinus infections and pneumonia this year, but I've managed to maintain a 3.9 GPA.

The biggest change I have experienced in college is friends who know about my health and can support me to a certain extent, something I never experienced in the last 10 years of the disease. I decided early on - this time I'm going to tell them. And it's good that I did, because when you spend that much time around people, it's hard to pretend you're okay when you're not. They have been incredible, from half-carrying me across campus at two in the morning when my knees hurt too much to walk, to letting me sleep in their rooms when I can't make it home, to sitting with me while I cry or panic about nothing at all, and not being scared off.

When I turned 19 in March I thought, "Wow, I have been ill for a decade." I will be ill for many more decades.

As a child, I had no concept of what 'forever' meant, or that I would not get better. That was something that had to hit me late, and it was almost like being diagnosed all over again.

But yet, here I am, I'm in college: my GPA is higher than it ever was in high school, and, most importantly I HAVE FRIENDS. I have amazing friends, friends like I've never had before, and even though sometimes it feels like I'm being beaten by my disease, I know that somehow I've
made it this far and I know that somehow I will keep making it.
Posted by in ,  on 11:11 AM 3 comments

3 comments:

  1. This comment has been removed by the author.

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  2. WOW - this was such a powerful story ... to me. I don't know much about lupus.

    I can barely put my thoughts into words. I've never thought of children having lupus before, and I never would have imagined that so many medications would be necessary.

    I'll just stick to Wow for now.

    ReplyDelete
  3. Wow Javacia I didn't know you had lupus..I also don't think I realized that children were diagnosed with lupus, I thought it was something only adults had. You all are so brave..I'm happy that Hannah is happy now!!

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