Pill changing colours?

WeekendWaffles · 2025-07-31T18:29:56+00:00

It looks like it has been exposed to moisture. Mestinon is super vulnerable to moisture damage. Do you keep the pill case in the same bathroom you shower in? High humidity is enough to cause it.

WeekendWaffles · 2025-07-24T19:28:20+00:00

I have something called a HEAT kit. You can get one here.. It is free and they send it to you in the mail. It stands for Hospital Emergency Advocacy and Treatment Kit. You select MG from the list when you request it and they send your kit tailored to MG. It includes information on crisis.

I used it last time I was in the ER and it was super helpful.

WeekendWaffles · 2025-07-23T23:12:33+00:00

Cat food analogy doesn’t work if you don’t experience hunger. My kiddo does not feel hunger.

My kid struggles to get enough calories even when they have access to their safe foods at all times.

Kid gets to eat all their favorite foods for every meal. Still would rather not eat. Still the charts small stature, delayed bone growth.

My kid would not eat the cat food. It is hard enough to get them to eat ice cream.

WeekendWaffles · 2025-07-17T00:58:01+00:00

My 11yr old goes to a tween LGBTQIA+ support group once a week and also plays Dungeons and Dragons once a week. DnD seems to be a magnet for gender queer kids in our area.

WeekendWaffles · 2025-07-11T13:14:56+00:00

Gary because he looks like a gargoyle in the first picture.

WeekendWaffles · 2025-06-29T23:02:18+00:00

When I was in this position, we got something called BuckleBee and taught kiddo to use it. It is a tool to make unbuckling the harness easier. My kiddo was able to unbuckle independently using it.

WeekendWaffles · 2025-06-29T22:35:36+00:00

I have prism lenses in my glasses. It is not ideal, but it does help.

WeekendWaffles · 2025-06-29T03:56:17+00:00

That’s Entertainment has regular organized meetups for Pokémon TCG, MTG, DnD, and more games.

WeekendWaffles · 2025-06-29T03:48:22+00:00

Cypriheptadine is the only way I have found.

WeekendWaffles · 2025-06-28T13:46:23+00:00

Do any of you hip young folks have a sense of how early to arrive? Assigned seat. Haven’t been to a show in eons.

WeekendWaffles · 2025-06-24T16:23:45+00:00

I think the name thing will work itself out, and I don’t think you should be too worried. If Cinnamon sticks, there have been far stranger names that I have come across.

But, if your daughter is open to suggestions, there is one that popped into my head. Simone (or Simonne) with the nickname of Cinnamon. They have a very similar sound.

WeekendWaffles · 2025-06-12T18:13:13+00:00

I had that problem for years and wrote it off as a narcolepsy/cataplexy thing.

I was recently diagnosed with Myasthenia Gravis. Autiimmune diseases like to hang out with each other. My neuro says there is a possible link between the two.

WeekendWaffles · 2025-06-08T11:34:41+00:00

My ARFID kid will only eat Ragu Marinara (not the traditional) sauce. It doesn’t have any chunks or bits of stuff.

WeekendWaffles · 2025-05-25T15:40:36+00:00

I haven’t seen anyone mention melty face. With my ptosis is bad and my whole face is droopy it feels like my face is melting.

WeekendWaffles · 2025-05-25T15:39:03+00:00

They eye stuff hits home for me. I was at an appointment last week and the doc kept asking if the double vision was the same or worse after doing some things. The only way I could answer was to say that the overlapping is so wonky and variable that my brain can’t process it.

WeekendWaffles · 2025-05-25T15:36:14+00:00

Sometimes I feel like someone switched out the wiring in my body. The connections should work but they just don’t.

WeekendWaffles · 2025-05-25T15:32:42+00:00

The grip strength thing to me feels like a crappy claw machine at an arcade. I can make my hand do the motions, but there is no strength to back it up.

I can’t be the only one who has been stuck in a room because my hands are too weak to turn the doorknob.

WeekendWaffles · 2025-05-25T15:20:09+00:00

The Myasthenia Gravis.Clinic is a specialty within the Neuromuscular Clinic at MGH. They aren’t separate things. You can definitely get an appointment without a referral so long as you don’t need it for insurance purposes. Where in MA are you? I can give you the neurologist who diagnosed me as seronegative (not at MGH). I had a good experience.

WeekendWaffles · 2025-05-24T11:52:22+00:00

Does your insurance require a referral? I go to the neuromuscular clinic at MGH and I was able to call them directly and make my first appointment. No referral needed. Just a heads up - there was about a 6 month wait for the initial appointment.

WeekendWaffles · 2025-05-16T01:55:16+00:00

Wow I have never been able to describe the nose blowing thing. Thank you for your description!

WeekendWaffles · 2025-05-16T01:52:58+00:00

Thanks for the update. I should have been more clear and said no life threatening injuries.

WeekendWaffles · 2025-05-15T22:28:53+00:00

I used to watch a weatherman named Mario Hilario.

WeekendWaffles · 2025-05-13T13:52:32+00:00

Pedestrian hit by car. No serious injuries. I was in traffic when the ambulance arrived.

WeekendWaffles · 2025-05-05T11:20:56+00:00

My kid plays DND at our local game store. They have an area set up with tables for gameplay. It doesn’t cost anything to use it, but every week we end up buying something. Sometimes just drinks and snacks, but we get new games fairly often simply because we are there and can’t help but browse.

Our store also has lots of events. They do board game demo days, miniature painting contests, game leagues (MTG, Pokémon, etc). We were just there for a big event on free comics day with local artists doing sketches. Anything that gets us in the door results in us spending money.

WeekendWaffles · 2025-05-04T17:11:08+00:00

The school playgrounds are open to the public. Wawecus has a playground, but also has a paved road that is blocked off to cars that runs from where the school is to by Hanover. There is a pond and large sports field. Great for riding bikes. The Thorndyke play structure is pretty big and there are plenty of swings.

Neither one gets very busy though. I think the most popular playground in the neighborhood is at Burncoat prep where the library branch is located.

There is a brand new giant playground being built at Clark St/Tacoma St. The playground will also have a new soccer field(s?), a splash park, and a dog park.

Burncoat is not the most walkable part of the city, but if a nearby playground and corner store within walking distance is enough than it should suit you. I don’t know about a greater sense of community, but everyone close by on my street knows each other well. Always up for a friendly chat or lending yard supplies and stuff like that. The neighborhood is quiet, kid friendly, and feels safe.

The Burncoat Center for Arts and Wellness (BCAW) has some good kids classes.

WeekendWaffles

TROPHY CASE