hey, y'all

Apr. 12th, 2021 07:42 pm
lunabee34: (b7 it waits by executrix)
[personal profile] lunabee34
1. I have been in a pissy mood since my neurology appointment. I got my hopes up for a diagnosis, and I shouldn't have. To be fair, the neuro did say I have all the symptoms of MS except brain lesions, and I could just be lucky enough that none of my episodes have scarred my brain yet. He wants to continue to monitor me. I am still getting the eye CT exam, and that might yield something; he said if it did show evidence of optic neuritis, he'd be comfortable diagnosing me with MS. But I suspect that it won't reveal anything because no tests ever do. So I've been playing the whole is it all in my head? am I just imagining these symptoms? or am I lazy and looking for a justification? or attention seeking? or too fat? or crazy? game. But in the end, it doesn't matter. I've got to live with what's going on regardless of its origin, and I'm on my own with dealing with it.

So I'm doing the whole angry-mourning thing, and once I go to the eye doc, I'm just putting it to bed. No more seeking a diagnosis without the emergence of new or more intense symptoms. I'm really tired of digging a hole, throwing money into it, and setting it on fire. It is time for Project Acceptance and Endurance to begin.

2. Shot #2 kicked our asses on Saturday. Twelve hours after the shot my arm hurt so badly that it is the worst physical pain I've had outside childbirth. Which is, ah, saying something. Fortunately, the pain responded to tylenol which kicked it back to a manageable level. Both of us had fevers, body aches, and general tiredness on Sunday; I also had a terrible headache. Today, I'm still tired but pretty much fine. I'm still having the heightened neuropathy in my leg that started after the shot, and my arm still hurts a little (I've got a big, hot rash over the injection site), but I'm mostly fine. Josh is mostly fine now, too, but it took him a little longer to get that way than I did.

3. In other random news, I forgot to post about when I had the MRI. I found it strangely soothing and trancelike. It did not sound at all like the MRIs I remember from 25 years ago. Instead of a hammer beating on a metal drum, it sounded more like music to me; there were definitely tonal shifts and varying rhythms. It was oddly hypnotic. If I hadn't been worried about being completely still, I think I would have fallen asleep.

3. Have some awesome stuff to look at.

Thanks to [personal profile] amejisuto, I now know that Star Trek perfumes exist. I don't even know what to say about these, y'all. I mean Red Shirt? Pon Farr? Somebody did not think through the marketing strategy. *dies laughing*

Cuckoo Clocks by [personal profile] executrix
Blake's 7
Blake/Gan
This is full of all the hallmarks of [personal profile] executrix's writing: humor, spot-on dialogue, dangerous wit; it's extremely funny in places, and then it's very much not. Highly recommended.

Date: 2021-04-13 12:20 am (UTC)
amejisuto: (Ame Fish by lavinya_sedai)
From: [personal profile] amejisuto
I'm so sorry you still don't have a confirmed diagnosis. It's not in your head though, I can feel that. You've been too sick. It could be chronic fatigue, which from what I understand can only be diagnosed by eliminating everything else. Which sucks I know. I will light a candle for you and keep you in my prayers.

Especially since the shot kicked your bum. That sounds painful. I can't believe I'm jealous that you got one since I can't get it. I'm too allergic to too many things.

Glad the MRI went okay! That does sound relaxing.

HEE! Glad you liked the perfume.

Date: 2021-04-13 12:45 am (UTC)
archersangel: (WTF)
From: [personal profile] archersangel
i think i recall the star trek perfumes they might have been put out for an anniversary or something.

Date: 2021-04-13 01:15 am (UTC)
independence1776: Lilo hugging Stitch; Nani resting her hand on Stitch's head (Hugs)
From: [personal profile] independence1776
I am so, so sorry you don't have a diagnosis.

Okay, thank you. Whenever I tell people I nearly fell asleep when I had my MRI (gynecological), they can't believe it. I am thrilled to know I'm not the only person that's happened to.

Date: 2021-04-13 01:30 am (UTC)
kore: (Default)
From: [personal profile] kore
It sucks SO BAD to have all those symptoms and have every test come back "nope, nope, nope...." Everything depends on them stumbling on the right diagnosis.

Date: 2021-04-13 01:30 am (UTC)
princessofgeeks: (Default)
From: [personal profile] princessofgeeks
thank you so much for the update.

So sorry you all had such a hard time with the vaccines!!! Yikes!

Sending you ALL THE GOOD VIBES.

ALSO: YOU ARE NOT CRAZY
Edited Date: 2021-04-13 01:31 am (UTC)

Date: 2021-04-13 01:30 am (UTC)
teaotter: (Default)
From: [personal profile] teaotter
It sucks when 'news from a doctor' is better than no news, and you still don't get what you need. I'm so sorry.

... Why in the world would I want to smell like Pon Farr? I imagine the notes to be something like unwashed skin, dry stone, the smoke of ritual torches, and blood. Hm, once I put it that way, I could see BPAL putting that together. It still wouldn't be something I'd like, but I imagine someone would.

BPAL would also do a better Red Shirt perfume.

Date: 2021-04-13 03:02 am (UTC)
umadoshi: (tea - mug with heart (iconriot))
From: [personal profile] umadoshi
:( I'm so sorry that Diagnosis Quest is still leading to frustration instead of actual answers. Also sorry that you had such a severe reaction to the second shot, but glad you're improving.

*hugs*

Date: 2021-04-13 04:08 am (UTC)
minoanmiss: A detail of the Ladies in Blue fresco (Default)
From: [personal profile] minoanmiss
*sends you warm soothing healing vibes*

Date: 2021-04-13 04:53 am (UTC)
rahirah: (Default)
From: [personal profile] rahirah
:hugs:

I... I don't know about Red Shirt, but I am pretty sure there'd be a market for Pon Farr. >:D

Date: 2021-04-13 06:52 am (UTC)
From: [personal profile] timespirt
"HUGS"

I hope it's not MS hon because that is bad.

When I had the pain from my first shot I used an ice pack and it helped. I have to wait till the 29th for the second shot. I'm not looking forward to that since everyone has been saying it sucks.

Date: 2021-04-13 12:11 pm (UTC)
nyctanthes: (Default)
From: [personal profile] nyctanthes
Oh man. I'm sorry you weren't able to get answers.

Date: 2021-04-13 12:50 pm (UTC)
elfin: image:  olivia;  text: invincible (Default)
From: [personal profile] elfin
What a bitter disappointment. I don't even know what to say other than I'm thinking of you, and still hopeful that you'll get some answers.

Date: 2021-04-13 01:09 pm (UTC)
author_by_night: (Default)
From: [personal profile] author_by_night
*Hugs* I hope it's not MS, obviously. I agree it could be Chronic Fatigue. I really hope they figure out what's going on soon.

So sorry the vaccine kicked your butt! Glad you're fine other than still being tired.

Date: 2021-04-13 01:26 pm (UTC)
tamoline: (Default)
From: [personal profile] tamoline
*Hugs* I wish you had answers, good answers, that would allow you to get a successful treatment, but I can see why you might need to just move on instead of spending more time, money and effort (mental and emotional) on something that seems to be going nowhere. I'm sure that you're not making this up, and I hate that the healthcare industry seems to make people doubt themselves like this, women especially. Louisa's had waaaaay too many problems with that attitude.

I'm glad you're feeling mostly better after jab #2, though I'm not looking forward to Louisa having that, given what happened to her after jab #1.

Date: 2021-04-13 01:49 pm (UTC)
feldman: (not a doctor)
From: [personal profile] feldman
How frustrating!

I'm moving in the other direction, from "acceptance and accommodation" mode to the the mode where I engage with the medical-insurance complex for insight and other care options, and it's already exhausting and emotionally precarious. *support*

Date: 2021-04-13 06:59 pm (UTC)
spikedluv: (summer: sunflowers by candi)
From: [personal profile] spikedluv
*hugs* It just really sucks that you can't get a diagnosis. It's definitely not in your head, and I don't blame you for wanting to backburner it for a while.

I'm so sorry to hear that! I'm glad you're both feeling better now.

I think I would be the same with the MRI. I tend to close my eyes when I'm resting on exam tables, even at the dentist, and I'd fall asleep if I didn't have to keep my mouth open, lol!

Date: 2021-04-13 07:48 pm (UTC)
kat_lair: (Default)
From: [personal profile] kat_lair
Oh that sucks about lack of proper diagnosis :( Sending strength to deal with everything.

Date: 2021-04-13 09:11 pm (UTC)
corvidology: Young Frankenstein ([EMO] HUGS MONSTER)
From: [personal profile] corvidology
I'm sorry that you didn't get a diagnosis but it might still happen with the eye appointment. I don't think for one second this is all in your head.

My sympathies on the reaction to the shot because I had the same thing. Ack!

Date: 2021-04-14 01:57 am (UTC)
zulu: Carson Shaw looking up at Greta Gill (Default)
From: [personal profile] zulu
I too feel that I would fall asleep in an MRI machine. My grandfather is said to have fallen asleep on top of mountains--often near the edge. But horizontal is horizontal, man. And I am tired.

I'm sorry things didn't turn out as hoped, but I know you have a ton of determination you can throw at Living Your Best Life, SO THERE WORLD. Hugs!

Date: 2021-04-14 06:58 am (UTC)
lyr: (Amazons: annasiconnas)
From: [personal profile] lyr
1) *cuddles* I'm so sorry this is dragging on without answers or validation for what you've been going through. You're not crazy.

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lunabee34

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