We have a BOGO with Autoimmune Diseases
I have had Crohns Disease which was diagnosed when I was 18. I am now 48. Had resection in 2005. Was great for awhile, then blood disorders continue to be problematic. I also have 2 Brain Aneurysms and the first one could have killed me. August 16, 2016 leaked, but God saved me. The bleeding stopped, but did give me residual effects: my speech, processing (like Swiss cheese, holes not connecting), and my right arm becomes weak with poor control of fine motor coordination.
Migraines since 8 years old. When horrific Migraines show their ugly face, you can physically see the residual effects become seriously problematic. Brain Fog, Neuro Fatigue, etc. are a constant. There's the background of, "ME".
Symptoms got worse
Moving forward, Crohns became worse. My GI Doctor gave me HUMIRA in Nov 2017. I was doing great until I wasn't. Since 2020, summer, I could not breathe. Gained a massive amount of fluid near my heart, lungs and my whole body was not my own. It became so hard to breathe. My heart rate was a constant 146-133. I felt I was running a marathon.
Coping with drug-induced lupus
I was told that the LUPUS could leave once the HUMIRA was 100% out of my system. Well, my LUPUS decided to stay and become best friends with my Crohns Disease. I hurt all of the time, just varies on my pain level. Weather affects me, stress, and seems to be everything and anything to wake up either one or both.
I do get frustrated when I can't do what I want, when I want. Trying to balance these painful interruptions in my life, along with other medical issues is so overwhelming. I try to find the "Silver Lining" in it all. Some days I find it, other days forget it.
Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?
Have you been diagnosed with fibromyalgia?