I had my opthamologist appointment today. It wasn’t pink eye. I had been using Cipro for the past 2 weeks almost to treat a nonexistent eye infection. What was it? Apparently, my eyes had dried out so badly that they had mimicked the symptoms of conjunctivitis. I am now required to use artificial tears every day.
I knew eventually I would start showing the symptoms of Sjogren’s. I knew it would not be fun. I knew that I would be scared, but I didn’t think it would happen so soon. I just got the possible diagnosis a few months ago. I was told it could take years to develop since the only sign I really had was the positive blood work. It didn’t take years. It took a few months.
I’m not as scared now about it as I would have been if I had been symptomatic when the blood work came back. I now know that it is not as potentially fatal as it was when my grandmother had it and eventually died from it or complications of it. Doctors can identify the problems it causes now a lot sooner and they can start treatment. I may not even have to go blind, which is a big fear of mine. (Not as big as the fear of dying.)
I wish I could have support from people I know offline. I wish I could turn to people from YSA and say, “I have this really crappy disease and it scares me.” Still, I know, they probably wouldn’t understand. Maybe I should give them more credit, but how do you expect people 18-30 to understand a disease that is still classified as rare (though some things say it’s quite common and just goes undiagnosed)?
At twenty-five, you’re not supposed to have this problem. It’s an older person’s disease. Of course, if you look at most of my problems, I’m supposedly too young for them. (Which is all a part of my theory that I wasn’t meant to be born…not that I’m not grateful for the opportunity to be alive, but let’s face it, people with this many problems aren’t supposed to be carried to term.)
I don’t want pity. That’s one thing that I have never wanted. I want understanding. I would love to have friends who are interested in finding a cure. Strangely enough, my online friends have been more apt to join my Support Autoimmune Research cause on Facebook than my offline ones. I appreciate your involvement to those of you who joined, but it’s sad that people I know from the “real world” won’t join. I don’t expect them to want to join solely because of me and my rare little issue…I would expect them to want to find cures/treatments for all of the autoimmune disorders out there. They affect so many people, and I just would love to get my friends interested in trying to find a way to help all of these people.