Lupus Lyss

In May of 2007, I sat in Cottage Hospital crying my eyes out. I was in pain but more than anything I was scared. Before seeing the rheumatology specialist I had seen my primary care doctor for a pain in my shoulder and my hands. The pain had gotten so bad I could no longer grip a toothbrush and it hurt to sit, lie down, and sometimes even walk. I had already been told, “we think you have lupus” and “there’s no cure.” The doctor also said, “you could die.” I didn’t want to be alone in that moment but I was. I had gone to the doctor not thinking I would get news like this. My mom had a feeling it wasn’t going to be good news and later told me she didn’t want to say anything to scare me, but the sudden color change in my fingertips when I got cold and the wads of hair in the shower caught her attention. I had just completed a full marathon and was closing in on a 40-pound weight loss. How could this happen? Why me and why now? But in the hospital I was also crying my eyes out because I had been handed a booklet and told, “Read this.” I wish I still had it because it was seriously like a REALLY bad tract street evangelists hand out, the kind that literally scare the hell out of you. In it was listed all of the things I may never get to do and even now as I think about that list I can’t help but cry.

I finally saw my doctors yesterday, after a year with no insurance. New symptoms are appearing and I’m feeling exhausted lately. After talking to my rheumatologist about some of these things he decided to test me for Sjögren’s (pronounced showgrins) syndrome, a disease where the immune system attacks the body’s moisture producing glands. People with lupus can also have secondary Sjögren’s and I guess I’ll know in a week if I do too. My ophthalmologist also wants to put plugs in my tear ducts in order to produce more moisture and avoid any long-term damages that could result. It seems kind of weird to have plugs in my eyes and I don’t know if I’ll still be able to cry, but I’ve been told it will make me more comfortable and nobody will be able to tell. I’m still considering it. I honestly left the doctor’s office feeling pretty bummed, mad, and sad.

I don’t want to be “chronically ill” and I don’t want others to think of me as “the sick girl.” I know most people wouldn’t think of me as being weak or sick (jiu jitsu and boxing aren’t hobbies for the weak and sick) but in my head I have a lot of negative things going on. When I first was diagnosed I had a conversation with my friend JC about some of the things I was afraid I would never be able to do, I’m still afraid of that list. I know I’m not the one to say what is fair and what isn’t, but this feels pretty unfair sometimes. Part of it is my craziness, feeling like I have to have it all together, be strong, independent. I need to admit to myself first that I can’t take this on all on my own; I need to surrender to the Lord. I also need some encouragement and I feel funny asking for it, but if you feel led, please leave me a note or email me. I know it would help.