Alexceptional
2024-07-18T05:03:49.000Z
Late night health ramblings. Nothing bad, just grumbling at the mess that is health care
latest #44
Alexceptional
2024-07-18T05:04:42.000Z
So I got a referral to see an RA doctor baaaack iiiiiiiiin. I wanna say March? February? It's been a while
Alexceptional
2024-07-18T05:05:42.000Z
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
Alexceptional
2024-07-18T05:05:54.000Z
But they lack specialists and this is where I must grumble
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Alexceptional
2024-07-18T05:06:41.000Z
So I got the referral in February, just double checked. Indeed, February was when the process started
Alexceptional
2024-07-18T05:07:08.000Z
A month later I got a letter saying "You're waitlisted! "
Alexceptional
2024-07-18T05:07:36.000Z
NOW. IMAGINE. I had a flare up
Alexceptional
2024-07-18T05:08:40.000Z
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
Alexceptional
2024-07-18T05:09:08.000Z
Luckily, I do not have a flare up at this time!
Alexceptional
2024-07-18T05:09:13.000Z
But hoooooolyyyyyyyyyyyyyy shit
Alexceptional
2024-07-18T05:10:07.000Z
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
Alexceptional
2024-07-18T05:10:49.000Z
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.
Alexceptional
2024-07-18T05:11:28.000Z
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??
Alexceptional
2024-07-18T05:15:09.000Z
Anyway
Alexceptional
2024-07-18T05:15:57.000Z
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
Alexceptional
2024-07-18T05:16:14.000Z
So the nearest appointment I can get is......
Alexceptional
2024-07-18T05:16:17.000Z
October 15th
Alexceptional
2024-07-18T05:16:26.000Z
Alexceptional
2024-07-18T05:17:30.000Z
Dear immune system,
Please do not go bat shit before October 15th.
Teamwork makes the dream work,
Alex
Alexceptional
2024-07-18T05:18:50.000Z
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
Alexceptional
2024-07-18T05:19:48.000Z
Also, on a more amusing note
Alexceptional
2024-07-18T05:20:43.000Z
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?
Alexceptional
2024-07-18T05:20:51.000Z
"Well. They tend to be older........................"
Alexceptional
2024-07-18T05:21:01.000Z
Alexceptional
2024-07-18T05:21:31.000Z
FAIR ENOUGH, send it in the mail.
Alexceptional
2024-07-18T05:22:32.000Z
I mean, what can I say
Alexceptional
2024-07-18T05:23:07.000Z
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.
Alexceptional
2024-07-18T05:24:02.000Z
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."
Alexceptional
2024-07-18T05:24:26.000Z
Yes.......... my grandmother...................... mhm.........
Alexceptional
2024-07-18T05:25:16.000Z
It was easier when I was a kid because I went to a JRA (now an archaic term, they call it JIA now) specialist
Alexceptional
2024-07-18T05:25:58.000Z
So they had toys and a play pen so kids could just be kids while they waited for a doctor to see them
Alexceptional
2024-07-18T05:27:46.000Z
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
Alexceptional
2024-07-18T05:28:03.000Z
Improvised the whole whatever it was. Remember nothing of it
Alexceptional
2024-07-18T05:28:34.000Z
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
Alexceptional
2024-07-18T05:29:31.000Z
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.
Alexceptional
2024-07-18T05:29:35.000Z
AH. MEMORIES.
Alexceptional
2024-07-18T05:29:38.000Z
YOUTH
Alexceptional
2024-07-18T05:30:40.000Z
I think I was like 7
Alexceptional
2024-07-18T05:31:07.000Z
Really unsure but I know it wasn't toooo long after my diagnosis
Alexceptional
2024-07-18T05:31:17.000Z
ANYWAY. I DIGRESS
Alexceptional
2024-07-18T05:32:08.000Z
Waiting 8 months to see a specialist for a chronic condition you've had for 28/34 years is insane.
Alexceptional
2024-07-18T05:40:00.000Z
It's been a while since I grumbled about the RA and while I do have additional grumblings, I am tiredddddd
Alexceptional
2024-07-18T05:40:06.000Z
So I will sleep.
Alexceptional
2024-07-18T05:40:16.000Z
Thank you for coming to my TED talk
Alexceptional
2024-07-18T05:40:39.000Z
And sorry for the long winded grumbles lol
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