Update: 3 years later...
There I go, doing the exact thing I didn't want to do: not keep this blog up to date. I started this blog simply for the reason that I wanted to be that beacon of help for those young and newly diagnosed with Polymyositis as I never found one myself (most patients tend to be older geriatric patients). Well here I am trying to make up for it!
To start, my boyfriend and I are still together and going stronger than ever! We've both grown and encouraged one another these past years and the end result is us taking chances and progressing at work and in life and we're so happy and stable in our jobs and success for the time being.
We lost our beloved dog at the beginning of 2021 and that was a really rough time for us both. We have a shrine in the corner of our apartment equipped with gifts and paintings of her along with her ashes so we can still have her with us. We miss and talk about her daily still so we hope she's been watching us progress and thrive.
My job situation had changed in November 2021 also. After 7 years working in psychiatry, I left my job to work in clinical research and, although its a change, I'm loving it! A lot more encouragement, welcomed input, appraisal, and willingness to change things to be more efficient and work well with the team, and more bonus opportunities to incentivize the employees. This job is such a "unicorn" environment to work in and I love that they even work with me with all my doctor's appointments and infusions.
This new job leads me to my next endeavor: having to wait 3 months for my new insurance with my new job to kick in. As someone who receives loads of meds and has monthly infusions, I figured this would be tough but I could handle in. Coincidentally, right before my old insurance ran out, I had my last infusion in November 2021 and had a random allergic reaction on both days (red and raised hives, itchiness, flushing in face and chest) so my doc ended up asking for me to stop the infusions in the meantime until they could figure out what happened so I went 3 months without my IVIG.
So last month, once my insurance was active and I was ready to restart my IVIG, my doc told me that my reaction to my IVIG wasn't a single case occurrence and the med ended up getting recalled. They looked up my info and my lot was 1-digit different from the recalled lot number but they believe the batch of bad meds could have been larger than 1 lot. But this ended up getting me into using another IVIG med and its been wonderful these past 2 months. No headaches!!!! I'll get to enjoy my weekends again instead of being cooped up in a dark room suffering from headaches that border on migraines.
As of right now, my doc and I are at a stand still with my treatments as my numbers skyrocketed once the IVIG stopped and muscle weakness set in again to where I couldn't get up from a laying position and I couldn't lift much. Labs came back today that are still high but, considering that they were doubled last month, I'll take the win! I can see the muscle weakness subsiding now also so I'm taking things one day at a time again; small exercises at home using my own body weight and not pushing myself so hard that I'm asleep the rest of the day from fatigue.
Trying to see if I can get into to see a neuro muscular doc to see if they can tell me anything different as my diagnostic tests that we're redoing after 8 years are all coming back the same as before which means the various treatment combos I've done should have gotten me better numbers with my labs (they've always been OK and not great). Also, I've been on prednisone for 8 years and my teeth are feeling it as well as my bones and daily multivitamins can only do so much.
So that's all for now. The only things I have planned so far for the near future is more IVIG infusions, hopefully finding a new doc for a second opinion, and traveling as my boyfriend is finding us some great deals on traveling out of the country this summer/fall so we'll see!
See you again next month! Promise!












