Recently it’s been confirmed (third time now actually) that I don’t have rheumatoid arthritis. It’s taken three for sure confirmations for me to believe I don’t have RA. I’ve been treated for it since I was a teen. Back then it was all about 800 mg Motrin 3 x a day.
When I was 36, my rheumatologist had me on Imuran and some other things. When I became pregnant with my daughter (it was a surprise for sure) all those meds were dropped. Though the biologics were being offered during my pregnancy to help with the RA, I spoke to many reps of Enbrel and others, and decided no. I would not do that during my pregnancy. It was too risky and there was no evidence on children past a year – so no. I’d wait until after pregnancy.
And I did. I waited until my daughter was 18-months-old and the pain was flaring up to such a point that I couldn’t manage it and continue working at the same time. So I started the new regimen of a weekly shot and Imuran and so on. I believe it was about three months of being on that medication (I dont have memories here first hand but my notes from that the time tell me) is when I triggered with Functional Neurological Disorder and Pscyhogenic Non-epileptic Seizures and life as I knew it was over.
In my notes, I see Enbrel over and over and over and over. I write that Enbrel did this. I find in my notes:
‘The fucking Enbrel did this and the doctors don’t believe me’
I repeated this throughout the first few years in my journals. And at one point I read:
The fucking Enbrel did this and no one believes me. No one.
After that, I stopped bringing it up.
I told the doctors about my experience with Enbrel so much and they never, ever ever listened to me. I was crazy and needed to accept it. And Enbrel didn’t work like that, and my symptoms were not related at all. I was diagnosed with FND and PNES and told if I ‘just believed I had it, it would cure itself and I could go back to parenting hands on and work again.’ I tried so hard to ‘really believe’ myself out of this disability.
And I do believe – there’s absolutely no doubt I have severe PTSD and related conditions. I also believe my diagnosis of FND and PNES. I have all the symptoms. Believing it didn’t cure me though. So for some time I thought perhaps I didn’t believe it enough, and was at fault for my inabilities.
So for over a decade now I’ve been disabled. I’ve stopped mentioning my thoughts on how this triggered. I’ve worked hard to accept this, and accept there’s no help to make it better outside of my ability to learn and adapt with tools from NAMI Fresno classes and more. And now I’m being told I don’t have RA, and that means I never had RA.
If I had RA, I would definitely see the effects of it in my bones and body now and there’s no trace. I haven’t been on medication for RA since December 16, 2010. I refused to ever go back on them and decided I’d just deal with the pain. I’m still trying to wrap my head around this. I do know I have Ehlers Danlos Syndrome (EDS) now, and had never heard of it before becoming re-connected to the Autistic community in 2016. My assumption was I had RA and EDS. Now, I’m being told for a certain fact I do not have RA. I never had RA.
So tell me if you don’t have RA and you’re on medication for it – what happens to your brain? What does Enbrel do to my brain if I don’t have the condition it’s treating, and a the medications are knocking out my immune system? What happens to my brain then?
By Eve Reiland