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.
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.
This appears to be the main page for the campaign. I don’t know much about how it started, I know famous people have been involved, and it’s for lupus. You take your right hand and make a backwards L, hold it up, take a picture, and “hey, guess what?!?” …. it’s mirrored, and makes it an L in the picture. This is done for lupus awareness.
10 Things You Didn’t Know about Lupus
Source: The Lupus Foundation of America
Lupus is a mysterious and complicated illness that is difficult to diagnose and challenging to treat. Despite its widespread prevalence, about two thirds of the public have little or no knowledge of its effects. This Lupus Awareness Month, you can help spread knowledge and bring us closer to a future free from lupus.
1. Lupus is an unpredictable autoimmune disease that can affect the heart, lungs, skin or kidneys.
2. A lupus patient’s average medical and loss of productivity costs are roughly $20,000 per year, and can increase to $63,000 per year if he or she has kidney complications.
3. No special diet has been found to cure lupus or cause it to go into remission.
4. In certain cases, people with lupus are treated with cyclophosphamide, a chemotherapy drug commonly used to treat cancer that suppresses the immune system.
5. The steroids used to treat people with lupus are the same ones that body builders and some professional athletes have been known to use.
6. While lupus affects people of all races and ethnicities, African Americans — as well as Hispanics/Latinos, Asians, Pacific Islanders and Native Americans — are diagnosed with lupus 2-3 times more often than Caucasians.
7. Lupus is not contagious. It cannot be “caught” or “passed on” to anyone, no matter what symptoms are showing.
8. Sensitivity to UV light (present in both sunlight and artificial light) affects as many as two thirds of individuals with lupus. This is known to cause fever, debilitating fatigue, joint pain, and rashes.
9. Lupus is not a form of arthritis, but many people with lupus do suffer from joint and/or muscle pain.
10. It is estimated that more than 5 million people throughout the world have a form of lupus.
Visit lupus.org to learn more about how you can take action this Lupus Awareness Month.
Another resource I recommend is (Amazon) The First Year – Lupus An Essential Guide for the Newly Diagnosed.
Online support groups are great. I am liking the one I mentioned last night.
You can also look for groups in your area.
I’m now on My Lupus Team and can be found here. It’s a social media site aimed at connecting those with lupus.
Let’s hope it doesn’t go the way of the last one I was on (wearelupus / weareendo).