I'm not sure if I should post because I don't know if I have a diagnosis or not as of 2007.
In early 2001, after 4 years of mystery illness, my family doctor said lupus, referred me for a lot of tests. I subsequently lost my insurance and haven't sought help specific to lupus since that date.
Health problems over the last several years have been consistent w/symptoms of sle and I end up in the ER about 2-3 times per year w/different acute conditions that I let go too far.
I'm here because I don't want to go through this mess alone anymore especially knowing that I have to start the doctor visits again. However, if this isn't the appropriate place and you guys have any suggestions of a support group that could be helpful, I'd be appreciative.
About me, I'm 28, single, work full-time, had a grandmother who died from sle when she was 25 and my mom was 2, my mom has a "mutated form" of lupus according to her docs but is of no support and when I told her in 01...she said, "no, it's not true, God wouldn't do that to me."
I get my insurance this month and am terrified of starting this mess over again. Before, I had one specialist tell me nothing was wrong with me except being fat... so, I lost 100lbs and felt more pain and fatigue at that weight than I ever did when I was fat.
I'm doing ok now physically. The pain isn't the worst it's been and the fatigue isn't overpowering either. I'm just worried because when it does get bad, it gets really bad and new symptoms seem to be popping up too. I try not to worry since I know there's nothing I can do but I just hate feeling so powerless.
Thanks for letting me share and any information about support is welcomed. Be well.
You are perfectly welcome to post here . I am sorry to read of the loss of your grandma and your mothers illness. I am sorry that she isn't able to be more supportive of you at this time. It is hard to get and maintain insurance today, with fewer jobs providing insurance, constantly changing insurance companies etc.. I know it is hard to go to the Dr. regularly too because it puts Lupus right in your face, I mean, there is no way to stay in any sort of denial . That said, new symptoms could mean this nasty disease is trying to progress or evolve into something more serious, so it is extremelt important that you begin regular treatment and monitoring of your condition. I hope that your Dr. will prescribe some medications that alleviate a lot of the symptoms and keep Lupus in its place so to speak Take Care
Single Girl, I just wanted to say HI & WELCOME. I'm glad you found this group & hope you make it a regular stop. I agree with realisticchic that it's very important to keep trying to get answers---else there's no treatment offered. Keep at it, OK? Here's to better days ahead for you & soon. Best wishes. Bye for now, Vee