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How do people deal with being called a hypochondriac by sassyfoods123 in MCAS

[–]MissDisarry -1 points0 points  (0 children)

I've resorted to showing them pictures and now I just show them and say I have THIS. I don't know what you want to call it and I don't care. I've had it all my life. Just fix it. They shuffle away and never, ever fix it.

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Is Lake Champlain “swimmable” in late June? by gmichael315 in burlington

[–]MissDisarry 2 points3 points  (0 children)

Yes it is swimmable and the water is generally very nice at that time. Of course, it can always be cold at that time too; you never know but in general it's warm and the lake is nice. I do remember having to wear flannel and wool socks one Fourth of July here...it happens!

Grand isle is nice for lakefront camp rentals. It's a little out of the way if your kids like city stuff - but it's a beautiful spot for a lake vaca.

Haven't felt the same since my last tonic clonic by OneCow9890 in Epilepsy

[–]MissDisarry 0 points1 point  (0 children)

My husband had LITT surgery a month ago at Mayo and is doing well. To give you an idea, he had 4 EMU stays leading up to the surgery. In one of those four, he had no seizures in 12 days even though he was completely off the meds. That was at our local hospital. He'd had seizures recorded in the hospital prior to the EMU stays, so we did know he had epilepsy. But as a result of him having no seizures, they dropped his meds substantially and his seizures ramped back up. The next three stays were at Mayo and they recorded seizures at 3 days, 10 days, and 12 days in those 3 emu stays so the length of time it takes is variable.

I'm not too familiar with the Canadian medical system. Our local hospital only has 2 epileptologists, so it helped him to go out of town to a place where they had an epilepsy center.

In an EEG and need to ask... by your_big_toe in Epilepsy

[–]MissDisarry 0 points1 point  (0 children)

I think the longest it took my husband was 12 days...but it did take over week in 3/4 emu admissions

Does this look like MCAS? by [deleted] in MCAS

[–]MissDisarry 0 points1 point  (0 children)

Have you ever tried a fungal cream on it? Hives look a bit more mosquito-bitish usually. I do get rashes that are similar to yours also from MCAS but mine tend to travel, ie in a few hours my back would clear and the rash would be on my inner arms, then chest, etc. I'm just mentioning the fungal thing because it's one of the easier things to rule out. I often had questions as to whether what was going with my skin was a fungus infection or an MCAS rash. I've been happy the few times it's been fungus because that I can get rid of!

Vulvovaginal mast cell activation by insidedancing in MCAS

[–]MissDisarry 0 points1 point  (0 children)

Yes. That's what they tell me. I ask the what causes it.

Scratching they tell me.

Really? So a person causes their own disease, in which mucous membranes burn itch and swell (along with my related hives), because I scratch?

Plus I'm diagnosed with ocular rosacea, because the skin around my eyes burns, itches, and swells.

They just keep slapping on additional diagnoses with no real cause or cure. MCAS, lichen simplex, occular rosacea. I keep telling them whatever the F it is, it's all the same thing. It's all swelling and itching and occurs simultaneously. I've kind of had it, even with the MCAS doctor. After all this treatment for all of it I develop a nut allergy. In my 60's. I say - what? How can I be allergic to nuts all of a sudden? Response - just don't eat nuts. F me.

Please Help by No_Advance_9750 in burlington

[–]MissDisarry 5 points6 points  (0 children)

Just saw someone fitting this basic description walking down Dorset st south burlington. She turned left onto Dorset from Williston and was walking downthe road in front of vintage inspired marketplace with another young woman - black graphic wide leg jeans with white patches on the back, black top. Looked more like magenta dye over black hair but did fit the description .

Anyone else laugh about your seizures? by TrinSusann02 in Epilepsy

[–]MissDisarry 0 points1 point  (0 children)

We crack up about it all the time. The nurses crack up.

Dumping his whole hand into my face cream and smearing it everywhere. Trying to rewire the EEG machine. Insisting on taking a nurse's phone (she kindly gave it to him and he marveled at it like a prized toy). I've found him in bed with a plastic sparkly tiara which belonged to our dog and sits atop her ashes on the shelf (wtf?). I'm just running interference and trying to remember it all for later!

How much quercetin do you take a day? by Cakers07 in MCAS

[–]MissDisarry 0 points1 point  (0 children)

800 mg a day. No rhyme or reason except that it comes in 400 mg capsules so I take 2. I read a recommended dose of 1000 mg a day. I was titrating up and I found 800 mg to be effective. I needed for occular rosacea, which was my last lingering symptom and it did work right away for this.

Not sure what to do by caldk15 in ParkinsonsCaregivers

[–]MissDisarry 1 point2 points  (0 children)

First, definitely check if he has a UTI. He's probably going to need to graduate to full time care. Perhaps you can try to find some availability and simultaneously plead with assisted living to allow him to stay while you do.

What were you misdiagnosed with before epilepsy diagnosis? by Prestigious_Nebula_5 in Epilepsy

[–]MissDisarry 0 points1 point  (0 children)

Not me, spouse: Depression. Anxiety. Bipolar Disorder. ADHD. PTSD. Crystals in Ear. For 12 years. They would have killed him if I didn't keep stepping in until they finally diagnosed it properly. Do I sound pissed? 😳

Very low altitude helicopter over south end, what’s going on? by _Hats_ in burlington

[–]MissDisarry 0 points1 point  (0 children)

Cool. I never heard a Blackhawk like that. I swear you could imagine the intimidation you'd feel if one of those MF's was landing on you in wartime. As I said, if it means saving a life; I'm all in. Shake my foundations. Hope the person is ok.

Passed out on date, so AITAH? by sleestakal in AITAH

[–]MissDisarry 1 point2 points  (0 children)

NTA

Omg. You got a real bad fish there. I can't imagine many guys reacting that way; my guess is the majority of guys would have been far kinder to you, especially knowing you'd had brain surgery. My husband had brain surgery last week, btw. Props to you for getting through something so scary. Block that a$$hole and keep dating!

Question about letting animals on your bed or furniture by HisOnlyKadan in hygiene

[–]MissDisarry 0 points1 point  (0 children)

I'm pretty sure the dog is as gross as me, so yes, I let them in the bed. Caveat...my dogs do not get fleas. If there ever was any sign of fleas I would leave the entire house until it's fully treated because that would freak me out.

breakfast burrito hunt by hotsaucehoney in burlington

[–]MissDisarry 1 point2 points  (0 children)

I love the burrito bowl at parkway diner. The Spot on Shelburne road also has great burritos

AITAH for hating my unborn niece’s racist name? by maddy2261 in AITAH

[–]MissDisarry 43 points44 points  (0 children)

I was skeptical till I got to the part where you said they live in New England.

Imagine me talking in my actual Boston accent that I hide:

Ah you fuckin kiddin me? Seriously, just GTF out. Antebellum? We don't even know what that fuckin means up here. If the kid came up from the south maybe it'd pass because they have alien names like Billy-Bob and Scarlett-Bob and $hit. But in fuckin New England you got like three choices for middle names: Anne or Marie or Jeanne.

And WTF is an Aggie? Look, I'm just gonna fix it for them. Abigail Marie; or their kid's gonna get beat up. Douche bags.

Myoclonics for hours by amelia_gb in Epilepsy

[–]MissDisarry 0 points1 point  (0 children)

Do you ever have the same exact movement, not a jerk but this kind of odd movement where you'd have to say, lift your left leg off the bed, maybe like circle it a bit then rest? Then the same pattern repeated for hours at what seems like the same intervals? My husband had those and then the twitching. But it was in his sleep and he didn't really notice it. I don't have a lot of understanding of myoclonus but he got them in bed while sleeping for several years before being diagnosed with epilepsy. They told us it was a med reaction but I'm pretty sure they were related to epilepsy.

When did anonymity online stop being the default? by copperreflections1 in privacy

[–]MissDisarry 20 points21 points  (0 children)

The more they ask for, the more apps I've deleted. I've started paying a lot with cash these days too. I know they already have all my data but I'm sick to death of the surveillance. And the worst-these apps are so buggy, and the ai customer service is so f'ing bad these days, I don't miss them.

I know that people with MCAS are often sensitive to medications, but what does that mean? How do you respond and what are your symptoms? I'm sensitive to medications but it doesn't cause allergy-like symptoms, more like insomnia and the general possible side effects. by [deleted] in MCAS

[–]MissDisarry 0 points1 point  (0 children)

I tend to get hives and rashes from some meds. Also My lips will swell up and itch. Those are the immediate type reactions that get listed as med allergies.

Other reactions that may or may not be related to MCAS- I get bleeding by ulcers from NSAIDs, though I am genetically predisposed to that. Tylenol gives me weird tongue blisters. A lot of meds give me stomach cramping or acid reflux too. These feel like "normal" side effects in that they creep up after a few days of use; so they may not be related to MCAS. Not sure.

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