It’s been a bit.

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 taking part in a research study.

http://www.theliftstudy.com/

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

Why participate?

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.