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.
Ask for help when needed.
Get back my not giving up/hard headed attitude.
(Yes, those two can and do exist.. especially since right now I’m giving up and not asking for help, I just assume that there’s nothing that can be done.)
Get through the stuff going on in my personal life that I can’t post about right now, and live.
And never surrender.
The genomics company I’m doing the study through is trying to find a way to see how active lupus is, through a blood test.
Not only is it awesome to take part in research studies and help with health issues, but they are paying $75 for you to prick your finger 3xs in 6 weeks (every two weeks you get a kit).. you do have to do the whole study to get paid, you can’t stop after one or two finger pricks and blood collections.
http://www.luckfupus.com/2017/05/dxterity-lift-study.html – that post has a lot of information in it. Please take a look, and if you are able please take part!
Who can participate?
Men and women 18 or older diagnosed with lupus
Join thousands of people with lupus helping advance scientific understanding of lupus without leaving your home
Help researchers develop new tools to monitor lupus disease activity. You will be compensated for your time—receive $75 for complete study participation or tell LIFT to donate the $75 compensation to a lupus charity
How does the LIFT study work?
Sign up online at [http://bit.ly/LIFTStudy-lf]. You will receive an at-home fingerstick blood collection kit in the mail within 30 days.
Use the kit to collect only a few drops of your blood at home. Mail your sample to the research lab using the prepaid mailing envelope.
Log in to your secure study portal and complete a short survey online.
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.
Mischief is a huge part of my life. He is my cuddle buddy.
My pain spiked so Johnny brought Mischief to me and we cuddled and Johnny took this picture.
As expected I bruised where they got the iv placed for my cortisol stimulation test (which took six pokes including the one that placed it, which also needed an ultrasound machine to visualize to place it properly), and I bruised at some of the attempted iv sites too.
Here are two pictures (one – outside – from this morning, and one – inside – from this afternoon – with a better camera) showing how I have bruised from that IV. It’s a pretty good sized bruise, and is all around one of my skin biopsy scars.
Oh yeah…. I’ve got scars from skin biopsies checking moles for cancer.
AM on the left, PM on the right.