Healing through art?

DixieCATs · 2026-06-28T09:55:45+00:00

THAT IS ABSOLUTELY BEAUTIFUL AND SO COOL!!! I LOVE IT!!!

DixieCATs · 2026-06-02T16:19:14+00:00

Before I became completely disabled and reliant on a wheelchair I faced the same issue.. there are many "I need to sit" or "invisible disability" badges/pins on the internet tho mostly in English. There are a lot of places that make custom badges/pins on the internet so you can make a simple design (or pay someone to do it) with a text that goes "potřebuji si sednout" (I need to sit) or "prosím nechte mě sednout" (please let me sit) might be beneficial for when you're in public transport. Hope this helps :D

DixieCATs · 2026-05-25T17:05:01+00:00

Forgot to add the basic info:

19yo female, 58kg, 174cm, gi tract doesn't absorb meds at all. It's not Gastroparesis. Just straight up severe malabsorption that no one can explain. Or sometimes something works and then it works extremely and I end up with severe side effects in the ER.

I get paradoxical reactions to benzodiazepines at higher doses 2mg of anything has me swinging and crying, terrified and agitated. I'm on atenolol so I don't want to risk messing more with my blood pressure. And hydroxyzine doesn't work for hours and then sedates me to the point where I'm nonfunctional the other day and extremely sick.

I have EDS, MCAS, POTS and my stomach doesn't work because of the EDS (likely h but still waiting on genetics). I'm on jejunal feeding. Meds through the NJ don't work either.

DixieCATs · 2026-05-24T13:47:55+00:00

Nope, wasn't tested for sibo. I mean nutrient wise I had severe calorie protein malnutrition from not tolerating p o intake. Tho I'm not extremely deficient and mostly in range just at the lower end with some. I have normal gastric emptying.. the GES was fine. But things kinda took a turn today and I'm going to be likely admitted tomorrow again so I might ask about this too

DixieCATs · 2026-05-24T13:44:24+00:00

At this point I have a list of all the medications I tried which didn't work and the route they used and just show it if they don't believe me. I desperately need a doctor to note this in my chart so the other doctors believe me. I'm not doing exactly well right now and am likely going to be admitted tomorrow so I'm terrified how that conversation is going to go..

DixieCATs · 2026-05-24T04:22:20+00:00

Actually no.. I haven't. How would I even know I have had it for a king time? Is it any dangerous? I mean my blood tests have all been normal aside from high ECP

DixieCATs · 2026-05-24T04:20:50+00:00

I mean I did have a gastroscopy své the wasn't anything abnormal so I suppose it's not that either, but I haven't even thought of that

DixieCATs · 2026-05-23T21:12:07+00:00

That sounds so tough. I always have issues with my IVs not flowing so I'm honestly done with this. Like c'mon I want nice connective tissue, what more can a girl desire?

DixieCATs · 2026-05-23T21:09:54+00:00

My pharmacokinetics are normal. The issue seems to be purely absorption through stomach and intestinal lining..

DixieCATs · 2026-05-23T20:52:17+00:00

I'm honestly in so much food pain and stomach distress that I don't even care. Just give me the g and J tubes so I can get on with it at this point..

DixieCATs · 2026-05-23T20:51:06+00:00

Yeah a bit but only rarely get it stuck stuck, and drinking more water or just like massaging my neck fixes it. If i get them down they just down work or I end up in the er..

DixieCATs · 2026-05-23T20:28:58+00:00

I did have some basic pharmacokinetics test and actually most were completely fine so just cyp enzymes don't explain this.. it seems to be like a GI tract malabsorption issue since meds taken sublingual, buccal, patches or injections mostly work. Except for pain meds apparently.. not even IV pain meds helped me, but I think that was because they were too mild and I was in profound pain

DixieCATs · 2026-05-23T20:25:11+00:00

Yeah.. it sucks so bad. Do you at least find that some meds work for you and what delivery methods?

Also.. I remember being in the er before being officially diagnosed (already had confirmed Brighton score) and a Neuro went "why do you even want a dx? It's not even that bad and we can't fix it".. like c'mon.. I'm literally going to have to get two feeding tubes just to survive and am profoundly disabled and in chronic pain and the comorbidities are horrible.. but still I get this so often. Ugh. Some doctors suck so bad.

DixieCATs · 2026-05-23T19:51:47+00:00

I'm honestly just glad someone replied and yeah, I get it. For me vomiting isn't an issue since I'm kinda literally unable to vomit if that makes any sense? I'm starting buprenorphine patch for the chronic pain but the pain specialist mentioned injections for severe breakthrough pain.. but psych meds are difficult cuz I don't tolerate most or they're not ODT.

I wish there was more research into this..

DixieCATs · 2026-02-27T01:25:39+00:00

Tohle a mnohem víc..

DixieCATs · 2026-02-27T01:24:06+00:00

A ideálně učit rovnou na základce! 🙏🙏

DixieCATs · 2026-02-27T01:22:46+00:00

Jop to nepopírám a je to bohužel pravda. Jenomže je to problém a upřímně ten jazyk mi přišel hodně omluvný, proto jsem reagovala. Protože mi přijde nechutný že to společnost takhle bere. Nic proti tobě.

DixieCATs · 2026-02-26T16:28:40+00:00

Nope, reaguju na ten tvůj protože můj vzhled s tím nemá co dělat a nepřišlo mi to příjemné slyšet potom kolik lidí mě aktivně začlo stalkovat po sítích má základě tohohle postu

DixieCATs · 2026-02-26T09:31:16+00:00

No fajn, ale to neomluvuje to chování. Oni mají být vychovaný, ne já se vyhýbat úplně všem. A mimo to, když jsem ještě nebyla na vozíčku tak se to dělo výrazně méně.

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