More than a diagnosis

I know it’s been forever. Sorry. I’m will gives a update then what has be want type of for long time.

So am still alive, kinda lucky it’s been close a few times. Mine body has been mostly stable since get the portable feeding tube pump so am having food and water 24/7 and meds more. Still not knowing exactly what wrong- right now is thinking maybe just a bunch of stuff working together especially since was almost always alone- such as starvation, seizures, low oxygen (which seems maybe related to seizures), not sleeping, severe dehydration, growing up with cp and autism- possibly other stuff that we not can find yet. Some things could be possible but we’ll never know because I have no childhood or family records to help with diagnosis. Hoping to start ot/pt again and hoping it will help this time since last time me wasn’t having food and water. Maybe will wind up getting oxygen but who knows. But even with mine body being more stable mine thinking brain is still come and go and seem get more bad with time. Me do have the eyegaze device and it has more good AAC so mine words look better even if I’m not always making sense. (Random awesome sauce note this AAC is even bilingual.) Cheetos is still a huge part of mine life and idk what I’d do without him. Can me say a secret (not of him)? Me not wanting people worry but even tho am has way less seizures than used to it seems like am having more bad kinds more. Like me used have hundreds of invisible seizures every day, and now me not but it seems like now am gets body seizures every week and before think that was like 1 time a month. Of course nobody really knows because me was alone like forever. We tried having help from a program that sends “trained” caregivers cuz drs approved me. But it was bad, they not can do meds, use the hoyer, work a feeding tube or like anything me needs, mostly just watch me, and of course not know how talk with someone who is nonverbal, and the lady put my neck where not can breathe. So then Cheetos and Grr has get a personal assistant and it’s a little better but not much.

The other thing I’ve really wanted to talk about is diagnosis. It’s weird because I’ve had some diagnoses for lots of years and almost no support like autism. But like I have no official diagnosis of what is going on but they’ve been able to get me eyegaze device and power wheelchair, but are having a hard time getting a pulse oximeter even tho it’s documented I have severe asthma and get low oxygen during seizures. Maybe it’s just me but I’m thinking that if you’re struggling whether they can find a official diagnosis or not you should get help. If they waited for me to have a diagnosis for the feeding pump I’d have died. Possibly part of why/how Me has get so bad is because I’ve not had any help with things like food and meds even tho it was know that me had lots trouble because autism and stuff. I’m was thinking had more to say but mine thinking brain stopped and never did finish this so I’m just going to post it.


4 thoughts on “More than a diagnosis

  1. I read through some of your blog last week. I had to come back – I can’t stop thinking about it all. I hope you ARE getting the PT/OT that might help, and that you do get your dose oximeter (whatever that is).

    I’m a word person, and I want to know if you changed from writing “I did this” to “me did this” for some reason, or if it just seemed right to you. Or if it’s a sign that your condition is getting worse. That’s a scary though.

    I want to know if Cheeto is a real person, and if they are, to say thank you to him.

    I want to know if you still have your dog.

    I guess what I really want to know is how can things get so bad for a person in this f*cking richest country in the world without more being done, more care being taken.

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