I’m ready to cry. I’m about at my breaking point. All the docs I’ve seen so far are sure that I have a primary autoimmune disease with lots of secondary problems that make my life miserable. Many of them have said they think it’s SLE or something that mimics MS, but are deferring to rheumatologist’s ruling. I got my lab results & saw the rheumy today, but walked away empty-handed. He said that, while I have a lot of SLE indicators, apparently I don’t have enough (yet?). He said I could start feeling better (not likely, he admitted) or I’ll get worse and the numbers will reflect it. Either way, no course of treatment for today except to continue the inadequate pain meds, and no new treatments until I’m decidedly worse. I’m so frustrated, because I already feel like shit on a stick, and now this either has to become my new “normal” or I can pray I get worse and that whatever I have progresses quickly enough to be measurable. Great choices.

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  1. I am so sorry to hear this. Auto immune disorders suck ass. I’ve started to feel some of your symptoms in the past half year and it’s shocking how absolutely paralyzing those feelings can get quickly. And then not getting any real answers and things like “it may get better, it may get worse, there’s no telling, i can’t recommend much of a treatment for now”… terrible. That’s basically what my doc told me too. I decided to very drastically change my diet and if I stick to it and remember to take all of my supplements and try to keep other stresses to a minimum, I’m symptom free most days now. Which is SUCH a relief and I wish so much you could find relief too. <3 I know the daily load with three kids alone can be overwhelming as is. Add that pain and the fear of sitting on a health time bomb with apparently no way to stop it early… Not fair. :(
    Sending you so much love and I pray that you find tools to help yourself feel better. <3 <3 <3

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