So I got a referral to see an RA doctor baaaack iiiiiiiiin. I wanna say March? February? It's been a while
So the NP I'm seeing works at a smaller hospital in the area. Basically, if you want to get seen by anything you go to the smaller hospital. It's good! Nothing wrong with it at all. I only have nice things to say
But they lack specialists and this is where I must grumble
So I got the referral in February, just double checked. Indeed, February was when the process started
A month later I got a letter saying "You're waitlisted!
"
NOW. IMAGINE. I had a flare up
And IMAGINE if I could not stand. I could not hold a mug, I could not make a fist or bend my knees or elbow. Imagine that plus being in a tremendous amount of pain when something so much as touches my joints
Luckily, I do not have a flare up at this time!
But hoooooolyyyyyyyyyyyyyy shit
WAAAAAAAAY back in 2017/2018 I did have a flare up and it sent me out of remission. And luckily I had the foresight to have a specialist already set up so I did not have to do new patient pick a number bull shit
AND DESPITE all my foresight and caution it still took 6 months to get the medication I needed and had already taken as a child.
And then another 6 months to function again as a human because I had been untreated for so long my body needed way more time to get back up to par. What immune system??
Finally today I got a call from the referred RA specialist office. They are with UVA hospital. whoo... Actually not whoo. The hospital's name is probably why it's near impossible to get a timely appointment
So the nearest appointment I can get is......
Dear immune system,
Please do not go bat shit before October 15th.
Teamwork makes the dream work,
Alex
Now, I don't think I'm at immediate risk of a flare up and I don't think I have anything planned for a flare up to be a blown up issue. But the looming dread of possibilities is terrifying when I know to get the same medication I need that I have taken twice in my life and both times has sent me into remission would take SIX months to approve
Also, on a more amusing note
When talking to the receptionist on the phone she was like "We're gonna mail you some paperwork for you to bring in with you."
But what if email...?
"We don't use email for patients generally..."
Oh, why not?
"Well. They tend to be older........................"
FAIR ENOUGH, send it in the mail.
You know, in a weird way, I can't wait until I'm older because at least I'll blend in at the RA office a little easier.
Can't count how many times, even in relatively recent memory while I was in the states where I'd be sitting at the RA office and some older woman would smile and ask, "you're waiting for your grandmother dear? Oh, that's so sweet."
Yes.......... my grandmother...................... mhm.........
It was easier when I was a kid because I went to a JRA (now an archaic term, they call it JIA now) specialist
So they had toys and a play pen so kids could just be kids while they waited for a doctor to see them
But I blended in and I remember one day we had a really long wait, no idea why. But the other younger kids were getting fussy so I took it upon myself to give them a little play with some dolls I brought along to the appointment. I let another kid play another part that I thought was around my age and therefore trustworthy lol
Improvised the whole whatever it was. Remember nothing of it
And then I got called in for my appointment, handed the other kid my other doll, told them good luck with handling the others and skipped away
I COMPLETELY forgot to retrieve that doll back from the kid and proceeded to cry on the way home after I realized it half-way through the car ride.
Really unsure but I know it wasn't toooo long after my diagnosis
Waiting 8 months to see a specialist for a chronic condition you've had for 28/34 years is insane.
It's been a while since I grumbled about the RA and while I do have additional grumblings, I am tiredddddd
Thank you for coming to my TED talk
And sorry for the long winded grumbles lol