Hi everyone. How are you tonight?
Itâs been a rough few months, and I wanted to share an update since I havenât posted in a while.
A few months ago, I was officially diagnosed with Rheumatoid Arthritis, something weâve suspected for a while, so it was nice to finally get confirmation. My rheumatologist started me on Methotrexate, and thatâs when things took a turn for the worse.
I was prescribed 6 tablets once a week and took them for 6 weeks. But I started getting extremely sick with flu-like symptoms, worsened gastroparesis, painful sores all over my body, and more. When we looked up Methotrexate side effects, I had around 20 of the ones that say to seek medical attention immediately.
We later found out that, due to my other health conditions, I should never have been prescribed Methotrexate in the first place. I also shouldâve been monitored weekly, which wasnât happening. Things got so bad we nearly went to the hospital several times, but since Iâm immunocompromised and Methotrexate suppresses the immune system, we were afraid Iâd catch something in the ER.
We tried contacting my doctors, but no one responded. So we stopped the medication ourselves. Itâs been about 3 weeks since I stopped, and Iâm still recovering, but Iâm slowly getting stronger. Unfortunately, my RA is flaring badly in my hands and feet since itâs currently untreated.
A few days ago, I did end up going to the hospital because I wasnât improving. They found my blood sugar was dangerously high, diagnosed me with diabetes, gave me fluids, and discharged me. Ironically, I started feeling better the next day. Now weâre unsure if I truly have diabetes or if itâs a lingering effect of the Methotrexate, which can mess with blood levels.
I was so sick I had to take a C in my theology course because I couldnât finish the final paper, and I had to drop the next class I was supposed to start. My next course begins August 25, and Iâm doing everything I can to be well enough to take it.
This whole experience showed me how broken my care coordination is. My primary care doctor didnât know what was happening and wasnât communicating with my other specialists. No one was checking my chart to make sure treatments wouldnât conflict with my other conditions. I have a meeting next week with my Medicaid service coordinator to talk about better coordinated care and possibly enrolling in dual Medicare/Medicaid, which Iâve been told I qualify for.
This could have killed me. Iâm grateful to be alive and slowly healing, but Iâm also angry and frustrated that this happened at all.
Thanks for reading. I appreciate all of you.
#ChronicIllness #disability #RheumatoidArthritis #Methotrexate #Gastroparesis #Diabetes #Medicaid #Medicare #HealthcareSystem #PatientSafety #CareCoordination #Immunocompromised #DisabledAndProud #Survivor #Spoonie #SpoonieLife #HealthUpdate #ChristianSpoonie