Thread: I have lupus
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Old Nov 22, 2014, 10:18 PM
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krisakira krisakira is offline
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Member Since: Aug 2010
Location: KS
Posts: 2,231
I was just diagnosed with Lupus. After a year of not knowing what was wrong with me, I finally have a diagnosis. I have been so tired and in so much pain. It is a relief to know what is causing it but I am still sad that I have lupus. I initially went to the doctor because I had a lot of pain and fatigue, thinking it might be fibro and CFS but she saw white gunk on my tonsils so she tested me for strep, and it came back negative. Then she tested me for mono, and it came back positive. So oh great I have mono, and probably been having it for a long time now. She did some tests for rheumatology and sent me to a rheumatologist to rule things out and it turns out I have lupus, on top of the mono. I also have heard that mono can actually trigger lupus. So that makes sense. Anyway, I just wanted to get it off my chest. I feel sad that I have it. Yesterday was a horrible day and was in bed most of the day. But today was better. I even went grocery shopping for thanksgiving stuff so that was nice. Hardly any pain today so let's hope that the lupus flare up is cooling down or the mono is getting better. And that it stays this way for a long time. But I will never know what tomorrow may bring, and that is part of having lupus. You get good and bad days. I am trying to finish up my school semester. It is tough and I am very behind, and have not gone to class for a week and a half. My teachers are required by law to work with me since I went through disability services with documentation from my doctor of the mono diagnosis, but my teachers don't know about my lupus yet, cause I have not told them yet. I've had bad responses to telling people I have lupus. They say "oh I was told I had lupus and it turned out that I didn't have it, so get a second opinion" and another person said "the only way to diagnose lupus is with a spinal tap" which i'm sure as hell not getting one of those, and they are not regularly done for lupus. It's a diagnosis based on symptoms and blood tests. Then there are the family members who tell me what I should and shouldn't do now that I have the diagnosis "just eat this, or that" and it will "cure" it, etc. People can be so ignorant. I just want someone to give me a hug and tell me it's gonna be ok. I don't need my family and friends to try to be my doctors and nurses. That is what I have my rheumatologist for. Sorry for the rant, just been dealing with a lot. Thanks for reading if you did.
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