Life with two rare diseases
Scared and afraid
June 29, 2021: My first Rituximab infusion. I cried myself to sleep the night before, I cried on the ride over to the infusion center, I cried entering the room, I cried as the nurse set me up for my 5-hour infusion, I cried as my dad left the room, I cried when I woke up from being knocked out by Benadryl, I cried when I realized I was the youngest one receiving an infusion in the room, I cried when I registered I would have to do this all over again every 4-6 months for at least 2 more years. I still cry to this day.
Hopeful
Honestly, 2021 has been a shit year but I am relieved that my kidney biopsy results showed what was causing my many symptoms. On June 8, I was diagnosed with Microscopic Polyangiitis (a form of vasculitis) and Mixed Connective Tissue Disease, both rare diseases. MPA is a condition that results from blood vessel inflammation, which can restrict blood flow and damage vital organs and tissue. MCTD is a rheumatic disease that has features shared by lupus, scleroderma, polymyositis or dermatomyositis, and rheumatoid arthritis. Although there is no cure for either of these diseases, I am thankful to have a treatment plan consisting of immunosuppressant therapy that will hopefully allow me to live a more functional and pain-free life and put my vasculitis into remission.
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