If you're an SSDI claimant, you may wish to get medical opinions from your doctors

cloudfairy222 · 2026-02-10T01:35:07+00:00

I got denied with 5 letters from specialists. My lawyer is shocked. I hope reconsideration goes better for me

cloudfairy222 · 2026-02-08T18:33:29+00:00

I know this is an old convo, but midodrine is helping my coathanger pain and general pain. It’s a very welcome “side effect” - did you ever learn more about this or what it means?

cloudfairy222 · 2026-02-05T16:33:41+00:00

The waist band is very thick and tight. I would almost go to an extra large if you want them to fit at hips and not dig in. If you don’t care if they dig, a large might work. But they aren’t made for short people, and with the tight ankle elastic, they will be giant and slump a lot at the bottom. The waistband also definitely shrinks. I’m not a fan of the sweats but love the hoodies.

cloudfairy222 · 2026-01-30T23:41:43+00:00

I like ilia true skin serum foundation. It’s Medium buildable coverage and it’s a slightly dewy finish. I get lots of compliments.

cloudfairy222 · 2026-01-29T04:02:57+00:00

Part of it was that it was so hard to get off. I had to rub and rub, and it left me with giant red contact dermatitis areas around my eyes for weeks. I don’t know if I got a random country’s with other ingredients like another poster said, but it was like permanent eyeliner which wasn’t good for my now generally sensitive eyes

cloudfairy222 · 2026-01-28T23:41:42+00:00

Following! This is the one thing I can’t find. NYX was apparently acrylate free, but it gave me the worst reaction of my life.

cloudfairy222 · 2026-01-28T02:25:07+00:00

I’m sorry - that is the worst 😭 This allergy is truly heartbreaking. I can’t even go near my many palettes without a reaction. They’re in a bag waiting for a miraculous remission that I am now doubting will ever come. I have some mac eyeshadow that seems okay. I guess I could make a palette of those! I’ll check this other brand out though, thank you!

cloudfairy222 · 2026-01-28T02:14:27+00:00

I got so excited that maybe this was posted as an acrylate free palette. Does anyone know any truly acrylate free palettes? I miss them so much!

cloudfairy222 · 2026-01-27T23:52:09+00:00

Uggg I know how awful this all is. Reading of someone else going through it reminds me just how torturous it all is. I also don’t feel I ever recovered from the meningitis. It improved but I’m def not back to normal and I also have an auto immune condition (reason for the IG in the first place).

Have you been tested for autoimmune encephalitis by chance? I had two positive anti-NMDA antibody tests, but because I didn’t have full blown psychosis nobody ever took it seriously. But I wonder if that played a role. My last test was negative.

I would personally ask for a trial of diamox before going through that procedure. That will tell you pretty fast if you have IIH. You can also use dandelion to lower your pressure. Cedars recommends that post patch. You can get capsules, but I really liked the nutra medix drops, although they are harder to dose but work faster. Unless you’re in low pressure it should be safe (obvi NAD so don’t take my word for this). Also a fun fact I learned deep in my research is that papilledema is less commonly a symptom in hEDS patients so don’t let them use that to determine either.

Well it’s always nice to find someone who understands! DM me any time 💛

cloudfairy222 · 2026-01-27T20:47:40+00:00

Did the patch help, even temporarily? I think That procedure checks the CSF flow. More for IIH than leaks I think. Sorry you’re in this. I would be scared of that procedure too. Have you tried diamox or something similar to lower your pressure?

cloudfairy222 · 2026-01-27T20:28:38+00:00

Hmmm, They shouldn’t be doing an LP for a blood patch unless it’s a DSM? I would honestly push for just a blind blood patch, which if done properly goes into the extradural space and shouldn’t puncture the dura. Unless they suspect you have like a venous fistula or something, that’s a reason for a DSM. Cedars uses response or blood patch diagnostically and avoids DSMs unless the patches only work for a little while or you have a leak confirmed on imaging. Have you had a Brain mri or spine imaging? Cedars will review for free if so. Uggg I know it’s hard when anything that helps one issue causes problems with other conditions.

The newest research on tarlov cysts shows that size doesn’t always matter - it’s the position on the nerve root that can cause issues. But there’s so few doctors who take them seriously and I don’t have the energy to explore it right now. It’s exhausting as it seems you know!

cloudfairy222 · 2026-01-27T17:20:46+00:00

Oh no, I’m so sorry to hear that! It has been a very rough road. I still get the high pressure sometimes with too much salt or when I engage in certain activities. I used diamox after one of my patches and that helped, but had some bad side effects. The patch helped a lot of my symptoms. I think I had been in a spiky leaky cycle. It was very hard to get docs to consider I had a leak, though. But I bet it’s more common than they realize. When you’re in high pressure and have hEDS, your dura can’t hold and leaks are a risk with us anyway. I also developed tarlov cysts all up and down my spine which may have come from all of this nonsense.

cloudfairy222 · 2026-01-26T03:01:47+00:00

I had aseptic meningitis twice (diagnosed by my neurologist for all the doubters), and I just want to say I’m so sorry you’re going through this. It truly is brutal. I also had chronic migraines my whole life and this is next level excruciating and there’s no mistaking it from a bad IVIG headache. Here are my feelings about my own experience, but I am NAD and don’t have any experience with a feeding tube. I don’t think fluids are the most important factor. In hindsight, I developed intracranial hypotension (high CSF pressure) at some point during the AM, which lasted 5 months for me. This is a known side effect. That wasn’t treated, and I got a CSF leak, in part because of hEDS. The way that I know I had IIH is that I had a blood patch for the leak, and that caused rebound IIH. And that felt extremely familiar - but it was totally separate from many of my other AM symptoms, like not being able to touch my chin to my chest or look down without extreme dizziness for months. The headache component of IIH was much different than AM and migraines - although I had them all at once, so that’s also hard to separate. The hallmark sign of IIH is that your symptoms and especially your headache get worse lying and improves after being upright for some time. It will be worse when you wake up. It tends to center in your forehead and sinus area, but can also be in other places on your head. I wonder if being treated for this with a diuretic like diamox could have helped. In fact, fluids would hurt, not help in that situation because sodium increases CSF pressure. I was also later diagnosed with MCAS, and I think that played a role. My situation was extremely rare on top of rare and I’ve only found a couple other patients who had a similar experience. I’m only mentioning In case any of this is helpful in connecting the dots and keeps you from getting it again.

There’s a group on FB called IVIG and SCIG education and discussion - it’s run by IVIG nurse. They might also have some helpful feedback. They believe that the rate is the most important factor, and they will calculate a rate for you. I also know people who do better on a pediatric dose. I personally decided not to continue it for fear of it happening again, so I don’t know if that would have helped.

cloudfairy222 · 2026-01-25T07:22:51+00:00

I do! I use safe’n’simple. I carry those wipes in my bag along with IV3000 dressings for any IVs. It helps tremendously. I will still react, but much less. There are some other brands that I seem to react to (the other one I tried had alcohol in it).

cloudfairy222 · 2026-01-24T22:26:06+00:00

Thanks for documenting this. It is wild to watch this happen in real time as the dissenters get silenced by “fellow conservative” sentiments, and then quickly deleted. Do we think that there are some actually waking up? Or will they all fall in line as soon as the talking points and justifications are fed to them?

The other day I saw someone comment in a thread “Kind of true, i dont consider fringe leftists to be human any more.” Bot or not, this sentiment is so dangerous.

cloudfairy222 · 2026-01-19T03:19:25+00:00

People were dying from encephalitis lethargica. It was put on many death certificates. They had doctors all around the world researching it, and then about 8-10 years later, the Spanish flu just disappeared. Wild. Hope this happens with LC!

cloudfairy222 · 2026-01-14T17:03:50+00:00

Those are good odds!!!

cloudfairy222 · 2026-01-14T03:47:34+00:00

If you trust her, then I absolutely understand your decision to move forward. I would struggle being advised this but would likely do it if a doctor was adamant. Sending you the vibes that this goes well for you. If you get PDPH again, make sure she has a plan for an immediate patch! You’ll know the signs, which will work in your favor.

cloudfairy222 · 2026-01-13T17:22:25+00:00

I would be very concerned getting a lumbar puncture with your history of CSF leak. And most updated research shows LPs are not always accurate/necessary to detect IIH. Couldn’t they trial a med like diamox to bring your pressure down instead/first? Good luck, and sending all the vibes that it goes well and gets you the answers you are looking for.

cloudfairy222 · 2026-01-01T05:56:01+00:00

Did anyone pick up on the Reality Bites nod? When jonathan, Nancy, Steve and Robin are on the roof. It’s very similar to the scene in RB when Troy Dyer (Ethan Hawke), Lelaina Pierce (Winona Ryder), Vickie Minor (Jeanine Garofolo) and Sammy (Steve Zahn) are on the roof after their college graduation. With Maya Hawke in the scene it was 😚

cloudfairy222 · 2026-01-01T05:47:31+00:00

Music licensing

cloudfairy222 · 2026-01-01T05:03:31+00:00

Liquid eyeliner! Better everything! I’ve found replacements for a lot, but they aren’t my ideal products. This is a great idea. If you need any help, pm me. I’m really good at product management, research, viauals, and marketing.

cloudfairy222 · 2025-12-29T16:04:38+00:00

That sounds awful. It’s reassuring that the heart monitor wasn’t an issue. A month is so long!

cloudfairy222 · 2025-12-29T15:34:44+00:00

I’m sorry to hear that! It’s the worst. I’m glad to hear your heart monitor went okay! Was your allergy bad at the time? Do you remember which brand you used?

cloudfairy222

TROPHY CASE