I had been referred to him due to my Hashimoto’s Disease rearing its ugly head again, however, this time throwing me into a hyperthyroid effect, rather than hypo; which for me is highly irregular. Because I recently had both bacterial and viral infections, which started a wave of terrible flares, I went into this appointment with both barrels loaded with questions. Although he seemed both impressed and relieved that I knew what I was talking about and the right questions to ask, due to the enormous amount of research I’ve done, it gave him the confidence to be very open, honest and extremely ‘matter of fact’. I wasn’t all together prepared for this because it’s not something I run into with most doctors. This was the outcome…
After going over my medical history and my families medical history, which includes two of my mothers sisters having Lupus, and going over all of my symptoms, he said that it’s only a matter of time before my pathology catches up to my symptoms and that I am in the process of developing Systemic Lupus SLE.
There is a list of 11 criteria for helping in the diagnosis process, of which only 4 are needed; I met 5 of the criteria.
The “Eleven Criteria”
- Malar rash: butterfly-shaped rash across cheeks and nose
- Discoid (skin) rash: raised red patches
- Photosensitivity: skin rash as result of unusual reaction to sunlight
- Mouth or nose ulcers: usually painless
- Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
- Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
- Neurologic disorder: seizures and/or psychosis
- Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
- Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
- Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
- Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.
Of course I asked the doctor if there was any preventative actions I could take, to which he simply said, “No.” He told me that its in the DNA and that I was dealt a crappy hand. I thought, well no shit doc….he doesn’t even know the half of it!
At least I now know that I’m truly not insane and that my gut instincts are pretty right on. I did slip into a bit of a sad few days and hadn’t told anyone in my family till today. I suppose I got so used to people looking at me like it was all in my head, that hearing it out loud and confirming what I’ve feared and knowing all that I’ve lost along the way, it was obviously an emotional experience and I needed a few days to let it all settle in.
I’ve said it many times…it’s okay to have bad days or feel sad, angry or have upsetting feelings. What’s not okay, at least for me, is staying in that place for too long. It’s unproductive and once in that downward spiral, it can be hard to snap out of it.
For me, one of the best ways to cope, is by helping someone else, which is why I’m writing this today. I was pretty sad and thought about no longer writing, especially about this subject. Rather than being firm in my decision, I allowed my feelings to just be what they were…feelings, and then I realized that if I can help even one person, by inspiring them, encouraging them or educating them, then I can know that, even as crappy as this news may be for me, its not going to steal my sparkle, and in fact, it may lead me to a place of great satisfaction and purpose.
Yes, I’m in pain today with swollen lymphs, spot fevers, headache and malar rash, but I’m writing and I’m fighting and I’m not giving up. Today is the first day of the rest of my life and it will continue to be a beautiful, crazy, messy adventure because if you put yourself in the way of beauty, you find that it’s truly everywhere!
💚The Crazy Celt