What I noticed yesterday when I shared my wonderful appointment with my new rheumatologist, is that only two people understood that it was good, but not everything I need. The other few tended to act as if we’d found a cure and everything will now be hunkydory.
Not at all.
There is no light at the end of my AS tunnel because there’s no end. There’s no cure. Treatments themselves are trial and error. Already, even before we even TRY to apply for me to get the meds -we’re already in agreement that I’ll need to get a loan- there’s one biologic that won’t be a possibility unless the TB my surgeon said he found inside my appendix, was not really TB but looked like it. Don’t ask me if he still has files from 2001!
But. I still had a great appointment with my new rheumy yesterday! Woohoo!
She was dismayed about the gastroenterologist. Of course chronic gastritis exists! Also, she didn’t understand why he refused to scope me anyway. According to her, if a patient asks for testing, they should provide it, even without a preexisting condition. So, she’s a winner there! She will organise a gastroscopy and colonoscopy with a different gastroenterologist.
She was also shocked by the dermatologist who told me my weird skin issues were a birthmark. I had not been born with them! She thinks they might be psoriasis. She said that once we move onto the (expensive) biologics, if they improve, then we will know for sure. In the meantime, she’s given me a six month script of anti-inflammatory ointment to put on it.
She spoke to me like an equal. Actually, she really cares about us, it’s like we patients are her children. She spoke about side effects, and agreed 100% with why I saw the gastroenterologist! She’s given me the mother of all stomach acid meds, and a daily anti inflammatory for now. But we definitely will need to move onto biologics. I’ll see her three months unless the anti inflammatory affects me, or the scope shows damage
The biggie! She confirmed my research (seeing my old rheumy doesn’t speak!) that all my health conditions are linked to AS. No, that’s not the biggie!
The biggie is that she went back to the very first MRI I had when I first went to the doctors telling them I was in extreme and increasing pain and needed help. This was in 2011. They told me there was nothing wrong and that the pain is because my core muscles are weak so I should see a biokineticist or physiotherapist.
She showed me the MRI. People, I wanted to cry. It was extremely emotional. I, with my untrained eye could see the damage that had occurred in my right SI joint. It was very clear, and so was the inflammation! How could they miss it?? The radiologist AND the doctor saw no thing -apparently! I could see it! My heart shattered into little pieces. All this time when I was crying over the years spent seeking answers, I had thought the MRI just wasn’t showing it at the time.
But it was.
The professionals who blamed ME for my suffering… The physiotherapist who only saw me twice and didn’t touch me, who made me feel like dog poop, dirty, disgusting. For nothing. It wasn’t my core Andy way, so I wasted time and money for nothing.
The nicer physiotherapist who told me my pain was because I wasn’t sashaying enough and needed to move my hips more. All that and more…Like the chiropractor who told me it’s because I carry a child on my hip. (Without asking if I even did.)
It was there in 2011. And as we looked at the January 2023 MRI that finally got me the diagnosis, we could clearly see how the passage of time has made things worse. The bone was jagged and misshaped, now it has been eroded too.
She also agreed with me that I need SI joint injections. Which the neurosurgeon said I didn’t! She cautioned that if any relief occurs, it might only be for a week, but it’s worth it. I can’t imagine a week of no pain in that hip.
She has also ordered specialized hip X-rays which I will have done before the ultrasound guided SI joint injections tomorrow.
We are on the right track! Not only did she agree that it was more than ok to stop the other meds I stopped, but she even spoke not only about my potential meds, but others’ too for other types of arthritis. was super talkative, very passionate, and gets that the pain is horrendous. She was even shocked that I had been exercising as I was!
I am extremely grateful I switched to her. If anyone in CT ever needs recommendations for rheumatologists, let me know! There are White patients who have yelled at doctors, saying they that they didn’t want a doctor of colour treating them, touching them, so be ‘warned’ that she’s Indian with a bindi on her forehead. She’s a rockstar!
Back to the fact that I’m in a tunnel that has no end. She emailed information through on AS. It included exercises to try slow the back from fusing into a hunchback. Breathing exercises to expand my rib cage to try prevent or show down the way it tends to not expand and causes breathing inabilities… And this is with treatment. There is no cure. It is progressive. All we are doing is reducing suffering and inflammation. And hopefully going to slow the disease down.
But, she is the light in the tunnel, and I’m grateful.
They said I should write a book 