aeriesfaeries

Hi everyone! Back with another update.

TLDR: I have ME/CFS and was diagnosed with CCI this year and had an occipital cervical fusion (skull fused to C1 and C2) Aug 29 with Dr. Henderson in Maryland. It did not put my ME/CFS or POTS into remission (yet) but I am seeing improvements in those areas as well as headaches, eating/digestion, focus and brain fog, speech, sleep, the ability to walk and be upright and participate in my hobbies. My neck is getting stronger and healing well. Previous posts can be found on my profile 💜

Things are going really well and I continue to see improvements in my CCI symptoms. I'm 5.5-6 weeks post-op and am starting physical therapy again. I'm very lucky I ha

Hi Everyone! Popping in for a quick update.

Tomorrow will be 3 weeks post-op and I finally get to go home (and wash my hair!).

TLDR: I had a cervical spinal fusion to address CCI. At this point it has not put me into remission but I have seen improvements. Total recovery is 3 years so this is just the beginning.

As many of you predicted, PEM did rear it's ugly head once I weaned off the pain medications. So far it's been more mild than normal and I did not get PEM from the surgery or hospital stay, I got it from overdoing it trying to take care of myself on a day my caregivers weren't available. It's still lingering like it usually does for me so I'm trying to get out of it as soon as I

First post: https://www.reddit.com/r/cfs/s/zYaKrhDDes

Second post: https://www.reddit.com/r/cfs/s/oLUMjVYBeR

Hello again and thank you to everyone who has been wishing me well and offering words of encouragement. I'm here with another update, I promise the deep-dive post will come soon but I am still deep in recovery and dealing with some less than ideal personal issues that require my immediate attention. I also want to wait long enough to see some of the full effects so I can paint an accurate picture.

TLDR: I had my skull fused to my neck to address CCI and it seems to be successful so far but too soon to tell if anything is in remission.

Little background: I found an ME/CFS specia

Hi everyone and thank you all for your well wishes on my last post. I had the surgery today, it went very well, and I am doing surprisingly well so far!

TLDR: I had an occipital-cervical fusion C0-C2 to address CCI (craniocervical instability).

I won't go into too much detail in this post but so far I have no headache at all and the surgical pain is about as bad as the pain from the repeated injuries, just more sore. Luckily they are keeping up on pain meds and muscle relaxers which is definitely helping. I'm in less pain today after surgery than I was yesterday when I had a migraine. And all the staff understand EDS and MCAS and POTS and such! I haven't had to explain anything except ME

TLDR: I have CCI and I'm getting my skull fused to my neck so it stops injuring my brainstem. There is a possibility my ME/CFS goes into remission or greatly improves. Ask me anything.

I have ME/CFS and was diagnosed with CCI (craniocervical instability) this year. Currently my skull moves 6mm and typically 1mm is allowed or 3mm if you have EDS, which I do. It's causing compression and stretching of my brainstem.

In approximately 2 weeks, I will be having surgery to address this. The total procedure involves pulling my skull back and up to relieve compression, scraping down the skull, C1, and C2 then fusing them with bone marrow from my hip and a donor bone called an allograft (there is a

I'll start with 3 things from this past year:

1. Bought 3 liters of saline out of a nurse's trunk for wayyyy too much money (this might be more POTS related)

2. Moved in (temporarily) with a caregiver I hired and met 3 weeks prior while 800 miles from home

3. Picked up a new hobby of looking through real estate listings and judging where people place their TVs

What are some of the weird things you've done or started doing due to your health (or lack of it)?

I'm looking at hiring a caregiver because my needs have become too great for my family. I already tried the insurance route and it didn't work so we're going private.

Has anyone here done that? If so what was the experience like? What did you request? What was the company able to offer in terms of support and tasks?

For context, I am severe, mostly bedbound, and have a lot of mobility issues with my neck and other joints. Additionally, in 3 weeks I'm taking a very large trip to see a specialist for one of my other conditions (I know this will be extremely difficult and likely to make me worse but every doctor I've talked to agrees this is necessary as its affecting my me/cfs as well as

Hi all, I'm hoping you can help me figure out a weird symptom/wondering if anyone else experiences it too.

Does food ever taste like dirt or mold to you?

It's clearly not the food going bad because other people are eating it just fine and I could eat the exact same food the next day from the same source and it tastes normal again. Sometimes it's everything I eat in a day, other times it's specific foods (like the yogurt will taste off but the granola is fine)

The mold taste reminds me of the smell of vomit deodorizer so you can imagine it's not the most appetizing and I already struggle to eat consistently and enough. The dirt taste is also gross but easier to power through.

The only gu

Hi all! I'm planning out my 2024 knits and really want to tackle a colorwork sweater but I'm looking for something a bit less traditional. Are there any patterns that involve naughty or "inappropriate" motifs? I'm talking middle fingers, dicks, maybe even swear words. I even thought about silly/goofy things like farting butts lol. I'd love to find something that's subtle from a distance but super naughty up close.

This won't be my first colorwork project or first sweater so I'm open to adjusting an existing pattern. I'd rather not draft it all from scratch (I don't know that I'm advanced enough for that) but I can def do some pattern finagling. TIA!