u/jilldxasd35

So, my access barriers are ARFID, disability, chronic illness, fatigue, burn out and living alone.

I did do a structured diet from a weight loss dr ( macro goals of carbs and protein mostly). I lost weight but that lifestyle of tracking, less processed food, weighing food, cooking etc was not sustainable for me. I don’t know how long it took but I have gained most of the weight back. I’d only lost about 15 pounds.

With my ARFID and burnout, I’m having to introduce processed foods back in and I’m terrified of gaining more weight and my numbers (which were good last time) going up.

I’m just curious if anyone has had success keeping numbers normal and losing weight in their 40s with lots of access barriers/eating processed food.

I figured eating this type of stuff is better than not eating. Eating is chore and I would rather have like a feeding tube or one going into my stomach. They should seriously make that an option.

I also can’t do meds so I’m having to solely attempt diet and exercise.

I’m just wondering what to expect. Wondering if anyone from CARF ever reaches out. I filled out their webform on provider feedback, found a feedback email, and then mailed a packet with my complaint. I’ve submitted feedback on a provider on two separate occasions.

A few days after I emailed, someone did email me to ask if we could set a time to speak. My accessible communication method of email statement got ignored. But I offered a time as this was my end goal.

I’m out of spoons as I’ve been self advocating on multiple fronts on my own between various systems and it’s exhausting. Went through all the hoops and back and forth. I’m disabled.

I don’t know how I’m to have a phone call with them. I’ve sent them all the information. I don’t know what to expect from the phone call if that even happens.

\*CARF - commission on accreditation of rehabilitation facilities.

I’m just wondering what to expect. Wondering if anyone from CARF ever reaches out. I filled out their webform on provider feedback, found a feedback email, and then mailed a packet with my complaint. I’ve submitted feedback on a provider on two separate occasions.

A few days after I emailed, someone did email me to ask if we could set a time to speak. My accessible communication method of email statement got ignored. But I offered a time as this was my end goal.

I’m out of spoons as I’ve been self advocating on multiple fronts on my own between various systems and it’s exhausting. Went through all the hoops and back and forth. I’m disabled.

I don’t know how I’m to have a phone call with them. I’ve sent them all the information. I don’t know what to expect from the phone call if that even happens.

*CARF - commission on accreditation of rehabilitation facilities.

I’ve never ridden the bus but drive along 18th ave se frequently as I live in the area.

Most of the bus stops have plastic over them with a QR code. (I’m driving and can’t scan the code.) Does anyone know why?

I know they redid bus stops recently but are all those stops along 18th not stops anymore?

I might try to learn how to ride the bus but are all the stops near me defunct?

I am in the USA and 42. I recently became eligible under dda/ddcs for autism. Developmental disabilities administration / developmental disabilities community services. They’ve switched names and then went back to dda.

Anyway, I got a service where I can have a caregiver. I can do personal care but have a hard time cleaning and organizing. I also could benefit from someone driving me places or attend dr appointments. I could also use an advocate to make calls and do care coordination when things don’t go right.

I’m expected to find my own caregiver. I feel like I need a lot of support in life. I don’t have friends and my family I am not very comfortable with them getting too involved in my life because I have cptsd from them.

I’m the disabled one trying to acquire a caregiver for myself which seems daunting overwhelming and backwards. I have some major deficits in socializing and communicating. I also have social anxiety. There are so many barriers in trying to figure out how to help myself with this caregiver. I also have other health conditions besides autism.

I am unsure what I should be doing with finding a caregiver. What I should be looking for.

I have started a small list of what I will want done but I believe I have to hire and train them. It’s unfathomable. I’m afraid it will be a disappointment.

What should I expect? I’m also unsure of when they will come. I have to create a schedule.

I just know I have 39 hours a month. I think they have to follow my plan. I don’t necessarily want them talking to me while they’re here. I’m hoping they’ll do the cleaning for me. I have horrible executive function skills and have a long to do list that I have trouble tackling. I could also use some help with someone do batch cooked meals or something.

I will try googling but what should I be looking for in a caregiver? Is there any literature out there for how a disabled person acquires a caregiver or things to keep in mind?

Thanks for reading.

I am in the USA and 42. I recently became eligible under dda/ddcs for autism. Developmental disabilities administration / developmental disabilities community services. They’ve switched names and then went back to dda.

Anyway, I got a service where I can have a caregiver. I can do personal care but have a hard time cleaning and organizing. I also could benefit from someone driving me places or attend dr appointments. I could also use an advocate to make calls and do care coordination when things don’t go right.

I’m expected to find my own caregiver. I feel like I need a lot of support in life. I don’t have friends and my family I am not very comfortable with them getting too involved in my life because I have cptsd from them.

I’m the disabled one trying to acquire a caregiver for myself which seems daunting overwhelming and backwards. I have some major deficits in socializing and communicating. I also have social anxiety.

I am unsure what I should be doing with finding a caregiver. What I should be looking for.

I have started a small list of what I will want done but I believe I have to hire and train them. It’s unfathomable. I’m afraid it will be a disappointment.

What should I expect? I’m also unsure of when they will come.

I just know I have 39 hours a month. I think they have to follow my plan. I don’t necessarily want them talking to me while they’re here. I’m hoping they’ll do the cleaning for me. I have horrible executive function skills and have a long to do list that I have trouble tackling. I could also use some help with someone do batch cooked meals or something.

I will try googling but what should I be looking for in a caregiver? Is there any literature out there for how a disabled person acquires a caregiver or things to keep in mind?

Thanks for reading.

It’s so frustrating. My face turned bright red when I put pure Vaseline on my face before showering. It’s supposed to help as a barrier. Not only the flushing but tachycardia. I also have POTS so I don’t know if that’s why I have tachycardia when face flushes from product or heat.

I have a dermatologist appt in September to address this and other skin issues on my body.

Right now I’m using a vanicream face cleanser but my face feels dry and tight after using that so I’m not sure it is truly best. Then one pea sized amount of their moisturizing cream. Anymore my face hates it. I can’t put anything on my neck. It’ll get itchy and red. I can tolerate the vanicream spf moisturizing and cereve mineral sunscreen for face. It’s very greasy so I’ll put translucent powder atop.

Here’s my notes for the appt.

React to:
Cereve hydrating cleanser
La roche posay double repair face moisturizer
Neutropenia oil free moisturizer
Showers
Dove sensitive soap
One pump Vanicream moisturizing cream
Cereve moisturizing cream
Pure Vaseline

Causes - Itchy, hot, flushed, tachycardic/increased heart rate immediately after using

Burning, stinging, or itching sensations, especially when applying products and after showers

Dry sticky eyes, sometimes itchy

Random flushed hot cheeks or ears

Visible blood vessel on right cheek

Facial pressure which I thought was sinus pressure

Facial tightness

Back itches with heat and/or chlorine, bumps

Rough patches on shoulder turn red with heat and itch.

Cannot put anything on neck or get itchy and red. Mostly on left side.