This post will be cross posted to Spoonies Unite soon.
This month has been rough for me, but I am ending it with an new medication. An actual treatment. I had to go online to a practice that focuses on longevity to get it but I had the blood tests and poof here the medication is.
I have used this service before to try other medication like LDN and I got my b12 shots my former pcp refused (I was very deficient after taking high does oral b12 for years -with neurological symptoms but hey I don't need treatments). I have always been treated with respect by this company and the NP that prescribed the new medication actually seemed a little impressed by my questions. This is a new experience for me. Most doctors completely dismiss me and everything about me. This healthcare provider had been nothing but respectful. It's refreshing and I wish she was my PCP.
I will start the new medication generic Rapamycin the day after Thanksgiving or possibly the day of after the big meal. There is a high chance of cold sores at least when first starting this medication and I do not want that while stuffing my face with delicious salty tofurkey.
This is a once weekly dosage.
I plan to blog about my experience with this medication. In a coincidence of sorts (not really because I follow the research on my illnesses because I can't find a doctor who will actually treat me) there is also a clinical trial going on for people with ME/CFS and this medication.
I will post more about the study and mechanism of action a bit later. I am still learning myself but the new med should help with inflammation and help get rid of "zombie cells" / cellular debris. I swear I should get an honorary PHD for all the research I need to follow just to survive. I can't remember words sometimes but I can keep up with the latest researchers and sometimes (eventually )actually understand the "why".
Word finding is an issue for me. It's part of why my posts and replies are often long winded. I forget the words but can explain the action. Something I learned to do since being sick. It's a survival thing. I suck at names too and learning new words. I can however define the word I can't remember so there's that... Yeah it's super annoying. It's like having the word at "the tip of your tongue" but like all the time.But there's nothing neurological going on at all with these cluster of illnesses (sarcasm)
I will need to do repeat blood testing every 3 months. They are checking basic stuff and to make sure there are no adverse effects on the liver or platelet counts as well as blood sugar monitoring. I have a high platelet count and am hoping this medication can lower that.
They are also monitoring one inflammation marker and it will be interesting to see if my number goes down as well as my pain. My inflammation is very high and blood work usually indicates that. It never leads to treatments but at least it's a biological finding.
......
I will be doing this month's and December's donation soon. Likely later this afternoon or tomorrow. I will post proofs once I am done.
One more thing-why am I cross posting a few days after the original post? It's a bit of a two part answer. 1. The FC community has more reach than the spoonies community right now. The point of this account is to raise funds and awareness of chronic (especially "invisible") illnesses. 2. My main account holds INCOME tokens and I can sometimes re-blog these posts and get an upvote. However, if I cross post right away the cross post will get upvoted and no rewards will be given.
There is a method to my madness usually
Thanks for reading-this post was a bit all over the place like usual. Happy Thanksgiving if that's a thing you celebrate.