When I first joined this site, I was undergoing testing and lots of poking and prodding. Things simmered down and the rheum told me he wasn't sure what was up with me, but that SLE could still be a possibility (I needed one more antibody for the "official" diagnosis). I started nursing school and I lost track of everything... support groups, health follow-ups, the date, etc. Thanks to the stress of nursing school, I wound up with pericarditis for two months. Not fun!! Rheum says it was lupus related due to how it responded to certain medications. I'm back to all the aches and fatigue and was started on Plaquenil.
I'm freaking out though. Unofficially I have lupus, but officially I don't because of needing that last antibody or weird lab value. I've seen my dad struggle with SLE and I'm scared. He was diagnosed at 35, I'm only 24. His brother died from lupus many years ago and my dad has had so many complications. Then I worry about what that additional antibody could be since I've read that a few of them can make pregnancy difficult and my husband wants kids. I'm calling my rheum on Tuesday to see if he can see me or order more blood work because this anticipation and not knowing is really bothering me. I want to know what we're playing with here. I've seen my dad suffer and I need a battle plan. I feel like I have anticipatory grief... grieving over dreams that my potentially be lost by that final diagnosis.
Am I normal in feeling like this? What helped you cope with your diagnosis?
One of the toughest things is dealing with " life on life's terms". My mother went un-diagnosed with Lupus, which we didn't realize until I was diagnosed at 50. I can remember symptoms as early as when I was in the eighth grade, but at the time no one had an answer for it. I don't know how different my life would have been if I had known then, what I know now..... I like Ann's advice, take it one day at a time, and do the next right thing : )
I don't know why your doctor is insisting that you have to have all the tests come back positive to be "officially" diagnosed? I have been told over and over that the majority of people with SLE never come back with a positive test. This was part of the reason that I never got help for years and years because some doctors think the way yours does and others the other way. Now, the way I have been coping for years is to look around me and listen to others talk about people who are way worse then I am. For some reason this works for me but I know that it doesn't for everyone. Each of us have to find our path in coping and there is no right or wrong way. You are very young and as we age we change in all ways. I have coped this way for many years but 5 years ago when I was at Mayo for my husband the people I saw there had me in tears and yet they were smiling most of the time and trying to make the best of the situation they were in. So be brave in any way you can. Know that you are not alone and if need be go to another doctor and keep going until you find one that supports you and arms you with answers for all your questions.
You will be in my thoughts and prayers. The very best to you!
Thanks everyone! I struggle with the one day at a time, but I need to learn to take things that way. I like to plan everything, but I really need to learn to just go with the flow. One of my professors knows about the lupus and she armed me with a ton of information about combating fatigue and the aches/pains. She has spinal stenosis and has a lot of aches/pains herself and is all about the natural stuff and eating right. I'm all for giving everything a chance. The more information I have from different sources, the more prepared I feel and it lets me know all my options for managing this. I feel like this group will help a ton in coping so I'm really glad I found it!