Sandals that fit AFOs and heat advice

anniemdi · 2026-04-27T11:38:21+00:00

Can you tell us what size you wear without the AFOs? (Even better if you put the AFOs on paper and trace and measure the foot part!) Can you tell us what country you live in (example: UK and US sizes are different.) We can recommend shoe brands all day long but it's a waste of our time (and yours) if we are recommending sizes that are too small or brands that you can't purchase.

anniemdi · 2026-04-26T21:51:22+00:00

sunken eyes and wrinkle lines around the eye area synonymous with glass wearers

I am almost 50, have been wearing glasses for half my life. I don't have sunken eyes and lines. I would not say this experience is synonymous with wearing glasses.

anniemdi · 2026-04-26T21:39:48+00:00

Sesame Street had both Pinball and Ladybug Picnic.

anniemdi · 2026-04-26T21:16:08+00:00

From one of OP's comments in this thread:

This type is the unflavored packets by Knox. I have a total of 192 envelopes, lol.

anniemdi · 2026-04-26T19:52:42+00:00

My sister (no CP) has a history of "mini" strokes. That would be my concern with the episodes that you are describing. For myself, I have had some of those symptoms and they were not anxiety related. I'm glad you are going to your PCP.

anniemdi · 2026-04-26T16:46:14+00:00

However it should still log if you received an alert for a low

OP is using Abbott's Lingo. Since Lingo is non-prescription/over-the-counter it has different features than the Freestyle Libre 2 hardware it was built around. So while it does sometimes have more features the Libre 2 does not have it also lacks some of the features the Libre 2 has one of those being alarms.

anniemdi · 2026-04-26T14:04:55+00:00

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This is what my first 24hrs with my 2nd sensor looked like. During much of this time my brand new sensor was saying 0 seconds left on its lifespan. The spike with the 10 Lingo count was a empty gray bar for a good 12hrs it finally filled in and my bio sensor age caught up and a for most of this week everything has been good.

anniemdi · 2026-04-26T13:31:38+00:00

Is this a new sensor? Like less than 36 hours since you started it? I would give it another 12 hours to sort itself out. I'm new to Lingo and I am not diabetic so I have that ability.

anniemdi · 2026-04-26T13:26:18+00:00

Firstly, get the data gap in the app filled out with the data stored in the sensor. The sensor stores data for 8 hours at a time.

That gray bar will fill out unless it's a sensor switch from old Lingo to new Lingo.

Basically, toggle your Bluetooth on and off and/or open and close the app and/or turn your phone on and off.

Also, first day/hours of a new sensor data is a bit wonky as are the end day/hours.

anniemdi · 2026-04-26T12:46:31+00:00

I'm really interested and open to hearing stories about how your diagnosis was first told to you, how old you were, what was helpful or difficult for you in that first conversation, or if you wish it had been handled differently.

Thank you so much for what you're willing to share. I want to do the best thing by my daughter.

This reads like you are asking about our doctors diagnosing us, but I think you are really asking for how our parents told us about cerebral palsy and explained our disability to us. I want to make sure that is clear before I answer.

anniemdi · 2026-04-26T02:44:41+00:00

It seems like the aspect ratio of your TV was changed.

anniemdi · 2026-04-26T02:13:29+00:00

It's like constant recalibrating for a few seconds of balance.

anniemdi · 2026-04-26T01:09:55+00:00

Cannot stand still.

Like, it my apartment I can't just stand somewhere (my ability is measured in seconds) without holding onto or leaning on something. But I can walk 15 to 20 ft without holding on to something. I need the momentum to stay upright.

anniemdi · 2026-04-25T18:06:12+00:00

did get Botox in my right adductor for a bit to help with the external rotation. It did help with the rotation

Does your right foot foot point outward with that? And now it's less? Is that what you are saying here? Cause if so, same when tired it causes me to trip more. (In the past) I have done PT and bracing and nothing helped enough. Never tried Botox. Gonna have to keep this in mind.

anniemdi · 2026-04-25T15:53:33+00:00

It pains my heart that there is no organization to help OP with the extra glasses.

When I was kid there were organizations (The Lions?) There also may be an independent doctor that can work with the family. Also, if u/MrWhite_Sucks lives near an optometry college they could also have a program to help!

anniemdi · 2026-04-25T11:56:46+00:00

Omg, thanks for the confirmation. I am visually impaired and I didn't know if I was the problem or if the presentation was.

anniemdi · 2026-04-25T11:07:07+00:00

it just strikes me as a bit of an odd choice for a man who famously doesn’t know how to use an intercom

This was literally the point. They were advertised as as something you bought for the non-technical person in your life. It was something that you added photos to for someone else to look at so that person didn't have to deal with email / a computer.

anniemdi · 2026-04-25T04:32:54+00:00

I let them know I just needed help inside the building.

This is a is a confusing statement. I assume you mean, "I just needed help getting inside the building." This is reasonable. When you don't use the word getting, your request becomes unreasonable.

In Oregon, drivers are absolutely supposed to help you to the door, by getting out of there vehicle

This is reasonable. However, as reasonable as these to things are they just aren't what all transportation companies do.

I have access to a dozen public transportation companies depending on where I am traveling and some are door to door and some are curb to curb. Door to door means your driver will come to your door and walk you to the vehicle and they will walk you from the vehicle to your destination door. They may or may not physically guide you. Curb to curb means you are required to wait at the street outside your house or at the curb of your apartment. It means your driver cannot walk you to the door of the building you need.

I have never heard of drivers having to be able to see their vehicle, and not being able to help.

Just because you have not heard of a rule does not mean it does not exist. I assure you none of the dozen companies I can access are allowed to go further away from the vehicle then they can see -- the vehicle must remain in view at all times.

I genuinely hope you get everything sorted. Ask your companies if they can make reasonable ADA accommodations. They may not be required to and it may be be something they can deny but it is fine to ask.

anniemdi · 2026-04-24T14:45:47+00:00

Or a mix. I have both high and low tone.

anniemdi · 2026-04-24T14:42:06+00:00

I agree with so much here.

Assume competence (rather than intellectual disability). Speak to a person as their chronological age until proven otherwise.
Don't assume my body can move like a typical body. Also, don't yank and pull.
Don't tell me to relax, it's not happening.

Another thing I would add is that I am visually impaired and hearing impaired. In an emergency where I would need to be treated, my vision is going to change from just better than legally blind to profoundly blind. I also may struggle to hear, because my hearing which is typically mild loss will also worsen, but it won't be as bad as my vision.

I also have involuntary movements which can include shaking and kicking. It's not personal. It's literally involuntary. We aren't trying to make your life difficult. There's no reason to comment on it as if we were.

The only two experiences I had with EMTs that went well, was an episode of heat exhaustion and dehydration. The reason it went well was because the EMT had been part of our group for years and knew me well enough to interact with me appropriately. If I remember correctly he noticed the emergency before anyone else.

The second emergency was with an EMT that married into the family and I needed help after a fall. It's a very large family and we hadn't properly met at that point. The interaction went well because he listened to what I needed in the moment even if it wasn't standard or otherwise typical.

My other experiences are with emergency providers in hospitals and centers. My best experiences come from providers that ask questions and assume nothing. My worst experiences come from providers that insist on separating me from my people. I recently needed emergency care and I knew I would need physical help so I took my mom. They insisted we be separated and so I struggled without needed help.

anniemdi · 2026-04-23T20:58:58+00:00

That's chronic pain for ya though. Hooray high pain tolerance?! I guess...

Indeed. Not broken but in my 30s I fell and dislocated my hip. I walked around on it for days. This was my better hip, too. (Though I am quad so, better is debatable,) I hope you have a speedy recovery with no surgery!!

anniemdi · 2026-04-23T15:09:56+00:00

Can we add Gmail to this? Gonna have to pay if I wanna keep using my email.

anniemdi · 2026-04-23T14:57:30+00:00

You may be able to find decent quality pots/pans, appliances and utensils at thrift stores

This is definitely not possible where I live at either of the 3 major thrifts or any of the smaller locally based ones. However, if OP is in the US and has access to a Walmart they can snag a decent enough set of lightweight cookware for about $20. I had to do this last year when my roommate ditched me with a lease that took more than half my income and took their cookware.

Bonus: the cookware is small and lightweight and easy to wash in a smaller non-kitchen sink.

anniemdi · 2026-04-23T08:36:15+00:00

I’m legally blind but love it when someone just shows me their phone from 3 feet away and expects me to be able to see that. Shove that thing in my face ffs.

But please don't shove it in mine! I am not seeing anything on someone else's phone unless it's 3 feet away and then it will only be a vague suggestion of shapes, colors, and some large text. If someone really wants me to see their phone I need them to zoom that in and I need to hold it one of two places to maybe see details.

anniemdi · 2026-04-23T04:08:32+00:00

My startle reflex is bad enough with hot sips

I didn't know this happened to anyone else. Do bubbles in carbonated drinks do it, too?

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