Lupus Warrior Mom & Nana
Hi, my name is Michelle I was diagnosed with SLE lupus and fibromyalgia 4 years ago.
Life without health insurance
Doctors said I’ve probably had it since my 20s though, but without having insurance then I was always brushed off in the ERs as just having back pain or something else, and treated and sent home with steroids and pain pills.
The lupus came to the surface
Until I began working & had good insurance, and then I broke my arm during the summer, actually crushed the wrist, and they think the trauma of the surgery brought the lupus to the surface more. Several months later my legs began to get weak I started losing weight, vomiting, diarrhea for no reason, & I also began to do bizarre things at work.
Coping with brain fog
I worked in the library at school I would put stacks of books back on the shelves that I would forget to check in, I would put them up in the wrong spots and think the volunteers were doing it but it was me!
I was going to rearrange the library at one point and I pulled several shelves of books off and then I could not figure out how to alphabetically get them back on the shelves. It was horrible, I sat there for hours staring at the shelves thinking "what am I going to do now?" That’s when I really became worried!
Testing for lupus
My husband started carrying me from the bedroom to the living room on the really bad days because my legs became too weak to walk and I was running a low-grade fever all the time. My doctor kept running the flu test, mono... everything but an ANA test.
Finally I went to urgent care and a doctor there told me I had some kind of autoimmune going on with myself, with my red rashed face, and there wansn't much more he could do on a Saturday, and that my doctor needed to do an ANA test immediately.
I called got in that Monday and asked for an ANA. She was reluctant but did it and it came back highly positive with a homogenous pattern which is common in lupus patients. So I was immediately sent to a rheumatologist. Finally I had answers!!
Months after the bad symptoms and years after the first symptoms started, I would see a doctor for my illness. I went the doctor, asked a bunch of questions, touched on my body, and I was diagnosed with SLE lupus and fibromyalgia that day January 4 , 2017.
The emotions that followed
I cried ... I cried because I was only 36 I did not want to be sick. I cried because I finally had answers. I cried because for a while I thought I had cancer or something else and was relieved, and I cried because I was scared!
Relationships and chronic illness
But I had my husband by my side and that helped a lot. He’s been by my side for the last four years ups and downs reminding me I can do this! I was put on steroids. I am also bipolar and it took its toll on that illness too. I eventually went into psychosis and had to come off the steroids, not a fun experience at all. I almost lost my marriage but thank goodness my husband knew that it was the illness and not me!
Long story short, steroids are on my allergy list report, LOL! I now take turmeric for inflammation which is a natural supplement. It helps, not as well, but it does help I take it 2-3 times a day. I’m here to tell anyone out there depressed about their diagnosis it will be ok get through that grief over losing your old self, but face each day and see what you still have in front of you!
I still have my 4 kids and 2 grandkids to live for each day for and I do as much as I can each day with them...don’t give up! Don’t let the disease or illness win! We are STRONGER! WE ARE LUPUS WARRIORS 🦋. Love to all the warriors out there & stay strong 💜
Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?
Have you been diagnosed with fibromyalgia?