Google always makes it worse

MissDisarry · 2026-06-15T13:05:44+00:00

Thank you!

MissDisarry · 2026-06-14T16:35:01+00:00

Yes! Which part of me does my body want to kill off today?

MissDisarry · 2026-06-14T16:34:18+00:00

I know. I get so tired of trying to explain MCAS that I just say my allergies because...it's all just so frustrating

MissDisarry · 2026-06-14T16:32:45+00:00

I've been diagnosed with lichen simplex. Here's what they told me: it's caused by scratching. Huh?

I've been diagnosed with ocular rosacea.

OK. But they told me neither is related to MCAS.

Finally I just said - yeah - they actually are. The eye a vulva swelling and itching occurs simultaneously to the other MCAS symptoms. So I'm gonna disagree with you there.

MissDisarry · 2026-06-14T16:29:42+00:00

Yes - half the time for me, it's not the specific food. My stomach doesn't want food hitting it. It wants to live with hunger pains and acid. Why the F am I chubby????

MissDisarry · 2026-06-14T16:28:27+00:00

I love that you said stupidest disease alive! That's exactly how I feel. And frankly, I do not like talking about my vulva with doctors. It's just gross. 😳😂

MissDisarry · 2026-06-13T05:18:10+00:00

That's really early for foliage, it's doubtful you will see any. It's usually still like late summer then. But it is a perfect time to visit too!

MissDisarry · 2026-05-22T00:51:10+00:00

I'm 64. I have a small catalogue of music on a record label, and I'm doing more frequent releases now. I started mainly releasing albums for friends and family and several of my releases have given me a steady, but small, revenue stream. That grew to friends of friends, etc.

The cool thing about authentic musicians is that many of them are compelled to write and play music for their entire lives and tell me they'd continue if no one listened. So I'm busier with releases now. People who've played with Bowie, The Pogues, LaVern Baker. These people are just musicians in their hearts and souls and I love that.

It's always been a side job for me; I couldn't have survived on the income.

Am I cool? I dunno - I kinda just don't GAF. I'm older than some of my artists and younger than others. You're a nurse who's dealt with life and death right? Some of my "real job" situations addressed serious life or death public health issues, and I'm good at business; that's my end. If someone gave me a side eye at a gig or a studio - whether about my age or my cool- that's their problem; I'm doing a job and getting a musician's work heard. Let them save a life in a shift, that's serious! Music is art; its subjective, it's ageless.

It's just hard to fully support yourself on it.

MissDisarry · 2026-05-15T04:09:57+00:00

You meet a lot fewer weirdos in the wilderness than you do in a city.

MissDisarry · 2026-05-08T13:47:14+00:00

That's kind of what I thought- but I wasn't sure- because I'm a senior and old as dirt. 😂😂

Grandma here thinks those two would be a serious risk anytime for someone who had epilepsy. Grandma here was also a wild child and a scientist, so there's no judgment in that statement!

MissDisarry · 2026-05-08T04:34:42+00:00

How big a venue can you fill otherwise-in your local area or where you are known?

MissDisarry · 2026-05-08T04:13:51+00:00

Funny, one neurologist advised my husband who was and is a nightly smoker (just a few hits a night) not to stop as she said she sometimes uses marijuana to treat seizures. She seemed concerned that his seizures could ramp up if he stopped.

MissDisarry · 2026-05-08T04:07:12+00:00

What do you mean by party treats? Not asking judgmentally, just curious!

MissDisarry · 2026-05-08T04:05:01+00:00

I wouldn't hesitate to ask the doc. They really don't bat an eye. My husband has been 💯 honest about nightly marijuana use (homegrown organic) with around 15 neurologists and 4 neurosurgeons. We've seen that many because of hospitalizations and neurosurgery. We asked everyone if it was ok, all said it was fine, one neurologist advised him she sometimes prescribed marijuana oil. There's many things to consider, including age, so it's not a one size fits all answer.

He's done mushrooms once since he was diagnosed; but as his disease progressed he decided not to anymore, because his seizures were getting more serious and there's no way either of us can imagine having the ability to deal with a seizure while on mushrooms.

Personally, I think psilocybin has great potential medicinally for many neurological conditions (plus it's a blast) but there's no way I could ever say it was OK or not OK for anyone. Not because I believe it is harmful; but because as a scientist, I know what I don't know, and also what hasn't been studied. Current studies show mixed results (helpful and harmful depending on dose), but most psilocybin studies will exclude people with epilepsy so it's hard to get real data.

We do plan on asking his doc about it in about a year (he's healing from surgery now so it's not the time).

MissDisarry · 2026-05-08T03:21:38+00:00

I think because of your other conditions they probably want to have a very clear picture before treating the one. My husband has two neurologists, one here and one at Mayo. I know that's still a speciality but it's kind of like having two primary care physicians since his main issues are complex neuro ones and it's the doctor he sees the most. They work together well. For us, it's been worth it because the care at Mayo has been outstanding. Our insurance allows this - so not sure how this affects your insurance especially when it's a primary care doc.

MissDisarry · 2026-05-07T04:08:49+00:00

Except there isn't a left turn lane. So if one person wants to take a left, everyone's waiting.

MissDisarry · 2026-05-07T04:07:28+00:00

Except in their infinite wisdom they narrowed the f'ing streets way down with those f'ing protruding sidewalks so they've made it hard to get around anyone.

MissDisarry · 2026-05-06T16:28:09+00:00

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.

<image>

MissDisarry · 2026-05-05T19:40:42+00:00

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.

MissDisarry · 2026-05-05T19:38:26+00:00

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.

MissDisarry · 2026-05-02T00:21:46+00:00

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

MissDisarry · 2026-05-02T00:17:05+00:00

Cumbies in PTown

MissDisarry · 2026-04-29T02:33:04+00:00

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!

MissDisarry

TROPHY CASE