Tomorrow is one year since I was hospitalized for colitis that we eventually learned was from C.Diff.
I’d go on methotrexate again in a heartbeat if I could, but I can’t use it again because of the damage that it and the c diff did to my kidneys. It helped so much with my autoimmune diseases even as it was doing that damage though. And the C Diff was due to the infections and antibiotics I had while on the methotrexate, because it lowered my immune system so much. I was so sick I could barely wake up. Once I was awake enough I could do things like talk on the phone, but I was having a hard time getting myself awake enough to remember my own name, let alone to talk to nurses or doctors or visitors. I struggled with that difficulty waking up for months after, though I no longer really deal with that.
My autoimmune diseases are back to where they were before the methotrexate, unfortunately.
I had a very bad day yesterday, with my autoimmune diseases. I told my family that it was one of the worst I’ve had for my joints in the last 3 or 4 months. Honestly though, it’s one of the worst I’ve had (excluding right around my surgery that I had in February) in most of a year. I’m scared that it’s going to become the norm again.
Anyway, too much musing on my autoimmune diseases.
I wanted to say how glad I am that I went to the doctor about the bowel pain I was having, and ended up in the hospital, because I’m alive.
Today I’d like to talk about two different topics.
First off – our landlady made a comment when I paid rent last month and I was talking to her about my health. I’m trying to let it go because I’m pretty sure she meant it in a “you’re not alone” way, but my mind keeps popping up with it, so here we go.
So I was talking about my declining health and such, filling her in since we’d been talking about my lupus. We got onto the topic of my new diagnoses (this was not long after the peripheral autonomic neuropathy was diagnosed, and right after I found out the same dr had made it official that I have MCTD), and I mentioned that I had two new diagnoses. She said X (I’m not even sure I’d call X an acquaintance, but I have spoken with them) had just received 2 or 3 diagnoses herself. I’m not sure if it was a “you’re not alone” or a “Quit your bitching, this isn’t uncommon” comment. The reason it’s bothering me is that X is older, so it makes sense for them to have several diagnoses. I’m only 31, so getting two new diagnoses is a big deal.
The other topic has to do with the last therapist I tried and failed. One of the reasons we failed was that he argued with me on SIDS stuff. He didn’t know what he was talking about and he challenged me about knowledge I have. I am fine with my ideas being challenged, but when it comes to SIDS research I keep on top of it. I like to know what’s going on, whose research into the causes looks promising, where research is being done, etc. He just brushed it all aside and said he didn’t believe me (not in that way, but it is what it came down to)…. it really upsets me. Maybe I shouldn’t be spending as much time focusing on SIDS as I have in the past, but one it makes sense that I did, and two I’m not spending hours a day on it anymore, I just have it pop up in my facebook feed sometimes, I rarely go searching it out. BUT I do know the subject material and he just brushed it off. I think I’ve talked about that before, but I also think it was a facebook status, not a blog post. I don’t think I’d started this at the time.
I’m wondering if I actually have fibromaylgia or not. I think it’s more likely to be the mctd that caused the pain aspect, and they no longer use the trigger points in the new diagnostic criteria. It would fit with what the doctor who did my admission last year said about it not usually being a dual diagnosis with lupus. I just know that the myositis explains my muscle pain. The lupus explains my joint pain and my fatigue.
Actually there are two that are official now that are new, but one of them has probably been for awhile and I didn’t realize it was actually official.
I have Mixed Connective Tissue Disease which has been discussed as a likely happening in my body since my hospitalization last year. It takes the place of my Lupus (SLE) diagnosis, and gives me names for more disease processes that are happening. The new one (which I’ve been trying to get a diagnosis for for a few years now, and which I’ve been saying was likely for even longer) is Peripheral Autonomic Neuropathy. I’ve been saying since I was diagnosed with lupus 8 1/2 years ago that I had nervous system involvement. It’s finally been diagnosed. It explains the episodes of nearly passing out, and so many other things. So that’s my health update for today.