Thursday, March 1, 2018


I'm feeling a little bummed out and discouraged. My blood tests came back a little weird so I had some more and every single test came back negative. Including the test for Lupus. I've always said I don't think I actually have Lupus but I know I have more than just Fibromyalgia and Trigeminal Neuralgia. Although, it's funny, the other day I was reading a new website about Lupus and it actually sounded like it could be me. Although, I've never had a remission. Lupus is all about flares and remissions and I've been in a flare for 8 years. So for now, my levels are off but with no reason why just yet.

I was feeling so hopeful because I felt that much closer to actually having answers but I now feel a little lost. It's been 8 years of getting worse and worse. We might all like to say that labels don't matter in real life. It doesn't matter what we are labeled or what we label others. I agree but when it comes to health it does matter. A label, a true diagnosis, would make me feel so much better. It would make me feel validated. It would make me feel whole. Not that I'm not whole now. I have a happy life with people who love me. I'm whole in that sense. I'm not whole medically. I need answers. I also need help. I want to be fixed and normal and whole.

I'm really hoping that once warm weather hits I'll start feeling better. I always feel a bit better in the summer but this is my first summer on all the TN meds and the Carbamazepine has changed a lot.

I finally got approved to go see the Rheumatologist. My appointment is in June. June! Oh well, I've waited this long so I guess I won't have any problem waiting 3 more months.

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