Life with Multiple Autoimmune Diseases

Hello,

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.

Migraine symptoms

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.

Became worse and saw Cardiologist. He had no idea what was going in. Test after test showed nothing. My GI Doctor finally did an ANA blood test. What results showed was LUPUS! It was DRUG INDUCED LUPUS FROM HUMIRA. We stopped the HUMIRA as it was killing me, literally.

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.

BLESSINGS,
Julie

Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?