RA Flare Up, 04/01/2021

 Good morning all! Chilly morning here, about 32F with a high of 38F. All my outdoor activities are on hold, 1) it will be a low of 21F and 2) having a flare up this week that has gradually been knocking me down hard. My joints are red and hurting and a couple of larger joints in my right thumb and index finger.

Finally got around to checking my temperature, low-grade 99.5 after Tylenol about 2 hours ago, so probably been running about 100. A couple of years ago, my providers were able to keep the flare ups in check better as I was getting Rituxan infusions. Unfortunately, a couple of years ago I started to develop a reaction to them. Ugh, I miss them! Felt like a million bucks about 3 months afterward! Was out jogging, running 5Ks, it was the best, truly miss it. Guess the plan is that if it keeps deteriorating, will be adding another medication outside of the methotrexate. The lower dose wasn't helping as it was, the higher dose was making my hair come out more and splitting my nails. The injections actually was making that worse as well, so we switched back to a middle ground on the pills. For me, the effects are not so great, but I hate how it affects my family. It's a challenge to keep up on the housework and cooking, not to mention how it affects each of them. They all try to be supportive, but I have this habit of downplaying it and pushing them away. 

In 2015, I was hit with meningitis that caused my brain and eyes to swell. I don't recall much of it, was in and out of reality during the 3 1/2 weeks I was in the hospital. I spent a few more days in inpatient rehab but my husband was able to get me discharged home to follow up with therapists for this. They doctors weren't able to say what caused the meningitis, bacteria and viruses were ruled out, which are typically what causes meningitis. Though I was told it was an aseptic meningitis, I have found a couple of medical journals regarding meningitis in RA patients. Here's one. You can do more research on this as well.

Rheumatoid Meningitis

My PCP advised me not to return to work too early, but with the hospitalizations and therapy, I was running out of leave time. I returned to work, but found that I was not functioning as well as prior to that. In fact, as more time went by, the harder it became. It got to the point that as I was driving for work a couple of times, I couldn't figure out where I was going and that was scary. And a wakeup call. I saw my PCP and we discussed what was happening. She shared, as I had learned in my healthcare training as an RN, that the event of meningitis and ensuing brain injury and PTSD from it, was causing long-term effects. Over a year now I have not been able to work.

I realize all this seems like doom and gloom, but it's something I wish that I had been educated on, that with the diagnosis of RA, there can be more to it than just the joint pain when you first wake up and the occasional flare ups. If you do have RA, or someone close that has it, please research responsibly. Reference only information based on medical research, not just from a random article you find on the internet. Also, don't be afraid to discuss with your provider ANY concerns you have. For me, one of the biggest issues I find is that I don't like to discuss the pain and medication side effects. I have finally gotten to the point that I am able to share this better as having the pain and diagnosis is not a weakness, its a disease. Sharing this has been difficult, but I hope my experiences can help someone else.

Alright all, thanks for your time. Have a great day and God Bless!!