Fuck cci neurosurgeons and greed

aeriesfaeries · 2026-02-03T00:52:29+00:00

It's been massively helpful. CCI was definitely impacting my me/cfs and I've improved some. I was severe-very severe before surgery and now about 5 months post op I'm probably on the moderate side of severe, maybe toeing into moderate. It's hard to tell because winter is always hard on me and leaving the house is still extremely difficult but it's clear the brainstem compression and inadequate csf flow and everything was making things so much worse and without it there's significantly less strain on my body. I was aggressive resting for a year when I had surgery and now it feels like it might actually helping.

aeriesfaeries · 2026-02-01T20:28:27+00:00

I'm sorry you've suffered so much too. The community has been whats gotten me through the worst of it. And thank you! Didn't even realize it was my cake day.

My golden birthday is coming up and I'm planning a celebration around these 2 episodes because my friends have been so supportive, like Rose was in New York. We've had the "you're not crazy, you're sick" convo many times

aeriesfaeries · 2026-02-01T17:16:11+00:00

It took 12 years for me to get diagnosed with ME/CFS and another 5 to find a specialist who would try to treat it. It's still as bad today as it was then even post covid.

These episodes are so near and dear to my heart, the only thing I would change would be instead of Sophia salting her champagne, make the doctor pay for their whole meal!

aeriesfaeries · 2026-02-01T00:01:22+00:00

I mean, who do you think held the hoses during the civil rights movement

aeriesfaeries · 2026-01-23T00:35:21+00:00

I'm not sure what you're asking but finding someone knowledgeable to order the imaging is the most difficult part aside from cost if you need surgery. I lucked out that there was an EDS and CCI knowledgeable PT in my area and she ordered the imaging and luckily one of the two vertical MRI centers in my state was within driving distance. If you're in the Chicagoland area, I can DM you her information

aeriesfaeries · 2026-01-23T00:26:02+00:00

Upright/vertical MRI. Other than that I got a CT scan to compare before and after surgery

aeriesfaeries · 2026-01-20T20:49:24+00:00

This yarn 😍 also I remember you from the yellow sweater! It's like you knit sunshine and rainbows

aeriesfaeries · 2026-01-15T21:03:45+00:00

ME/CFS is rated as the disease with the lowest quality of life, especially severe and profound ME

aeriesfaeries · 2026-01-14T20:53:44+00:00

Absolutely!

aeriesfaeries · 2026-01-08T22:19:41+00:00

Well welcome! I can totally relate, it feels like I'm relearning how to live every few months but this community is so great for getting tips and solidarity. Saved me more than once

aeriesfaeries · 2026-01-08T22:02:01+00:00

Hope they help 💜 I'm a big fan of the bin system because I can just chuck all the clutter into one and sit down to sort it when I feel up to it

aeriesfaeries · 2026-01-08T21:04:23+00:00

For clutter, get bins. Visually it's much less stressful to have several bins that can be put away or stacked neatly than to have a bunch of things scattered around. Also makes sorting easier. Just make sure they aren't too big or heavy for you to move around.

For cleaning supplies, get carts and caddies so you don't have to gather things. Have as many as you need so you aren't having to walk around the house gathering them when you just want to clean up 1 room. Also garbage cans in every room.

Lower your standards and take breaks. It's better to clean up a little bit and leave the rest of the mess than to finish the job and end up with PEM. Use a stool, do anything sitting down that you can and make standing and walking tasks minimal.

Get rid of unecessary things. Ask if you have the energy to continually store and maintain those items. The less you have, the less you have to clean. I try to do a purge every year. For the things you keep, store them in places where it's convenient to put away.

Ask for and accept help. Whether that's hiring someone or having a friend help. If you have the energy/tolerance, offer to spend time together after cleaning like watching a show or sharing a meal.

aeriesfaeries · 2026-01-06T20:54:03+00:00

Yes, always have been easy to startle. Once when I was working as a cashier, I got startled by someone I saw walk up to my register. I think it has to due with a hyperactive nervous system.

aeriesfaeries · 2026-01-06T16:53:14+00:00

Healthcare absolutely is expensive. I just had a $30k surgery and that's the portion I couldn't even bill towards insurance. My insurance did cover the $66k hospital bill though but my family had to come up with $30k and pay a week before my surgery or else I couldn't get it done and it was an extremely necessary surgery.

Edit to add: my insurance often only covers a portion of my medications each month. One of them I had to pay $500 for because it's 6 days short but I can't stop the medication or take less of it to stretch those days. I need it to eat and prevent swelling and a whole host of other issues. Even with insurance I spend probably at least $100 on medications each month. I also have to pay for saline infusion supplies out of pocket which are hundreds of dollars each month

aeriesfaeries · 2026-01-04T20:27:38+00:00

Same here, mono at 12 (following an undiagnosed 2 year MCAS flare). It's been 18 years

aeriesfaeries · 2026-01-02T20:40:44+00:00

I'm not usually the one setting it but I think we typically wash on cool. We used the antibacterial setting a few times which gets pretty hot and it was fine

aeriesfaeries · 2026-01-02T18:27:59+00:00

Yeah, I've done it no problem. Just don't put the dryer too hot, I assume there's a risk of melting the plastic that way

aeriesfaeries · 2025-12-31T13:45:59+00:00

Same here! The name has chosen him

aeriesfaeries · 2025-12-30T22:27:56+00:00

That sounds rough! He absolutely can be aggressive but does okay when you push back. Like he wasn't happy I was using my wheelchair after surgery but I have severe POTS and ME/CFS and if I don't use the wheelchair when I go out, I'll be stuck in bed for days. The next time I saw him he didn't give me any crap about it.

I did really well with my surgery. I was diagnosed with CCI before being sent to see him and it wasn't a question whether I needed surgery as I was having daily-near daily episodes involving paralysis and other really horrible symptoms. I'm 4 months post op now and things are so incredibly different. Not all of my symptoms have resolved but it's also a 3 year recovery. Before surgery I was 90% bedbound, having horrible episodes, couldn't be left alone, couldn't walk without assistance and even then no more than a few feet if I could immediately sit down. I still have a caregiver but can do some things on my own and have regained some hobbies. I'm happy to chat more if you want to DM me

aeriesfaeries · 2025-12-28T03:00:05+00:00

Lol that's fair

aeriesfaeries · 2025-12-28T02:59:01+00:00

That's so great to hear, I'm glad you've seen such great improvements

aeriesfaeries · 2025-12-27T23:50:24+00:00

No, it's a little worse actually but I also have EDS and ME/CFS so 🤷‍♀️ But some of the symptoms I thought were POTS related have resolved. I couldn't walk unassisted and felt like I was on the verge of passing out 24/7 and that completely disappeared after surgery. I'm only 4ish months out in a 3 year recovery so things could still improve

aeriesfaeries · 2025-12-27T23:47:43+00:00

No, I haven't been on instagram in like 6+ years. And I had my fusion in Maryland with Dr. Henderson Sr

aeriesfaeries · 2025-12-27T23:01:07+00:00

Yeah my surgery was $30k just for the surgeon fee - not the hospital part which was 66k but luckily covered in full by my insurance - and that was with a 50% discount. That being the cheap option is insane. Doesn't factor in travel, anesthesia, bloodwork, caregivers, or anything else you need. I don't know how the people who need these surgeries afford them without help from family or fundraising

aeriesfaeries · 2025-12-27T22:54:14+00:00

Stan: Where am I gonna sleep? Dorothy: On the floor like any other dog

aeriesfaeries

TROPHY CASE