you know what bugs me?

KarenNWendyn

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I took a course last spring on lessons learned from death and dying. The facilitator was a chiropractor and “life coach” who had also worked as a lay chaplain and hospice volunteer. Ok, sounds promising.
There were 12 of us. We went around the room and told our stories. The facilitator made a point of instructing us to just listen and not try to fix things.

At the break when I was in the restroom, he grabbed my partner and advised her that I would benefit from a grain-free diet. We could have decked him. 😱
 

blitzc

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What bugs me...
...when people see me struggle to move out of a car, in and out of chairs with the assistance of family/friends/walking very slowly with my rollator, or using the wheelchair and their comment is "you are too young to be using that devise or need that kind of help".
My mind wants to shout "What, only old people are disabled and need handicapped equipment and accommodations?" How can people be so ignorant?
 

blitzc

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Happy Birthday Kim and Lisa! You are both a blessing to all of us here. 🥰
🎂🎈
 

KarenNWendyn

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What bugs me...
...when people see me struggle to move out of a car, in and out of chairs with the assistance of family/friends/walking very slowly with my rollator, or using the wheelchair and their comment is "you are too young to be using that devise or need that kind of help".
My mind wants to shout "What, only old people are disabled and need handicapped equipment and accommodations?" How can people be so ignorant?
Bugs me too! I’ve gotten some stares that I’m pretty sure were for that reason.
 

KimT

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You can't cure stupidity but you can cure ignorance. I try to make it a habit to educate people on ALS. I hand out papers describing the disease and other handouts I've created or helped create to educate.

I am now giving these to all my new friends here at the condo. After reading the ALS Awareness Document, one of the guys I play cards with called me in tears telling me he really never knew the absolute terminal nature of the disease. He has gone on to create awareness throughout our condo. He's a young, retired Lt. Col. so he likes to take charge of things.
 

affected

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I agree Kim, so long as you when to hold em and when to fold em 🤭
well done spreading awareness there
 

lisa g

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Thanks Tillie now I can't get the song The Gambler out of my head o_O
 

swalker

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What bugs me is the seemingly-endless chase to get appropriate paperwork in place for medical things. Wheelchairs, hospital bed, and now ventilator.

I thought I would have the ventilator by the end of this past week. I called the DME folks and they had not received any paperwork. I called the clinic, and they said they would talk to the doctor. The clinic called back to say they could not find anything on file. Today, I was able to download the paperwork from the clinic via their patient portal.

Here is what the prescription for the vent reads (yes, there was one, but it has expired, so presumably it did not show up when they searched for it). This is so outrageously funny that you might think I am making it up. I am not. This is an exact quote! I thought about putting this in the humor subforum, but finally decided to do it here.

"Take 1 Device as instructed one time for 1 dose for Neuromuscular Disease. Astral ventilator, diagnosis respiratory failure from neuromuscular disease".

"Start Date: 08/23/2019 End Date: 08/23/2019"

With my swallowing issues, I don't think this medicine would go down all that well:).

Steve
 

Nikki J

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That does look ridiculous Steve. This is a new doctor to you? I suppose it is their computer system. Good thing it was not for a pwc. That would be really hard to swallow! And I hope that you will not have issues filling an expired prescription?
 

affected

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Steve I wanted to use nearly every emoticon here, and line them up starting with a thumbs up all the way to lividly angry because this is like the classic comedy of errors without any true comedy.

True who could write this (rhetorical)
 

Kristina1

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This is a great thread, I can relate to so many of these!!

But the thread itself brought something up that bugs me. Lots of comments refer to 'stupidity'. The reality is all these people saying/doing something ignorant or just not pausing to think it through are people of average (and probably above average too) intelligence. My autistic kiddo also has Intellectual Disability. His IQ is in the 40s. It's nothing we find shameful. He is this amazing person who leaves me in awe daily. We know many teens and adults with ID (Intellectual Disability). They would never do/say the "stupid" things described in this thread. That crap is firmly in the wheelhouse of typically developing folks. Let's stop equating ignorance, rudeness, and/or foolishness with intellect.

As disabled people we are not immune to ableism ourselves. Not judging or angry at anyone here just offering a perspective!
 

affected

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yeah Kristina it's like when someone does something awful and people say 'they are such an animal', and I know no animal would do things humans do!
 

KimT

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My local neurologist ordered my Trilogy. I wrote the letter and he just copied it on his letter head and signed it. I had it within a few days. My RT visits any time I need him but mostly we communicate on the phone because I have a local neuro and local pulmonary doctor.

It does seem like the paperwork never ends.
 

Kristina1

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yes about constant paperwork! it doesn't help that everyone in the medical world seems stuck in the dark ages with fax machines. It took 3 weeks for my enteral feeding supplier (Coram) to process a prescription for gravity feeding supplies. It went like this:

Me to clinic: They need you to fax a prescription for this.
Clinic: done.
Me to Coram: do you have it?
Coram: We can't find the fax.
Me to clinic: They can't find the fax.
Clinic: We are resending it.
Me to Coram: Do you have it?
Coram: We can't find it.

(whole process repeats 6 times then...)

Coram: We got it but they used the bolus feeding request form. They need to use the gravity feeding request form.
Me to Clinic: You need to use the other form.

Several failed faxes later...success we're processing your prescription, now it's labor day weekend though so check back on Tuesday.
Me: .... :/
 
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