mata schmata

update, sorta
i don't have much to update y'all on. i'm still alive! but unfortunately not any closer to figuring things out or getting treatment. wait times for medical care in america are absolutely insane.

i hate to say it but i may need to ask for donations again soon. i have not been able to leave my bed so a decent chunk of the time i have to order food which is obviously really expensive. there was also an emergency that came up and the donations were the only money we had to pay for it. that said, i need to be careful about how much i accept because the government counts it as income??? and they might think i'm Pretending to be poor. i guess.

it's rough. but. i'm staying hopeful. there's no other option but to stay hopeful.

thank you all again. i do read every comment. it means a lot that there is so many people hoping and vouching for my recovery. i have felt like nobody, with the loss of my passions and hobbies, and with the way doctors and even some closer to me have been treating me, and it may seem silly but knowing i've already done something worth doing enough to have impacted so many people--i need it, a lot, right now. so. thank you. thank you so much.

5 days ago (edited) | [YT] | 665

mata schmata

been trying to draw with my mouse a little bit

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2 weeks ago | [YT] | 573

mata schmata

hey y'all, another update.

so..., things are still not looking great for me. i've mostly recovered from surgery now, but i'm still having symptoms and episodes. i'm to the point where i can't really leave my bed or stand for long periods.

on the upside, i was recently bought a laptop by a few friends of mine, which means my quality of life is a lot better. i have no setup for my art tablet, but i may eventually be able to make music and draw with the trackpad/mouse. there's also more problems we've discovered in various test results and analyses that could lead to a diagnosis and treatment with enough investigation.

i say this all the time but thank you all so much for the continued support and well wishes... there's still a long way for me to go, but i'm still hopeful that someday we will find out what's going on, treat it, and i'll be able to live my (relatively) normal life again.

3 weeks ago (edited) | [YT] | 876

mata schmata

currently in the hospital, being kept comfortable. the surgery went well. my blood pressure is pretty bad still but honestly I'm feeling a lot better already. while I'm here the attending physician decide to do more tests, we've ruled out a couple things, and ruled in some. we found at least 1 thing that looks very off and if it's the diagnosis, it's very treatable. I'll let y'all know what the deal is once I consult the doctor about the test results👍

1 month ago | [YT] | 829

mata schmata

update again on my illness. this one is kinda good and bad

so, it's pretty unlikely the surgery is going to fix things. this surgery has rarely ever resulted in an improvement of these particular symptoms, but the surgery needs to happen regardless so that i don't have other health issues on top of it.

we've effectively confirmed that this isn't lethal but this is likely a chronic condition that is not curable, or happened as a result of an underlying chronic condition that is currently in a severe flare

that said, we are going to be continuing looking into and trying different things to see what this condition is and what possibly can be done to manage it.

(p.s, please don't use my suffering as a venue to push anti-medicine beliefs. any comments i get like this are gonna be ignored and swiftly deleted.)

1 month ago (edited) | [YT] | 699

mata schmata

another update.

i have been doing alright, relatively. i got my lung function cleared, so all the really scary stuff has officially been ruled out. my weight is still improving, and my surgery is officially scheduled for mid-september, and i have more tests covered.

we're just. surviving. 👍

2 months ago | [YT] | 686

mata schmata

heeey. another update.

so. on the 16th, things got worse again, despite all of the treatment we've been trying. i don't know why. i'm feeling a bit better now, but yeah. i'm still maintaining my weight at least.

i had my echocardiogram and holter monitor tests, and fortunately my heart has been cleared, so i'll be having surgery hopefully soon.

fingers crossed that there's some improvement in my symptoms with the surgery, cause if not recovery is gonna suck lol

we have some new theories about what might be going on in the meantime. one doctor i spoke to online thinks it may be an issue that can sometimes happen to people with my genetic disorder and my doctor is willing to try some conservative management methods to see if they help?

i hope everyone out there is doing well. wish me luck

2 months ago (edited) | [YT] | 904

mata schmata

hi everyone another update on my health situation.

so. we still don't have any definitive results about what's going on. i can say that i got a full contrast brain MRI and was fully cleared. the downside is we still aren't really sure what's causing the symptoms, but we still have a few things we haven't checked. I'm waiting to get my echo, and if that looks good the surgery for the stone will be after.

I will say some good news: I'm currently the heaviest I've weighed in almost 4 years of suffering from chronic malnutrition. SNAP doesn't cover everything I need to eat, so the donations have been immensely helpful on that front, thank you all again for the help :']

I'm overall slowly starting to feel better. I'm definitely not back to my baseline yet, and i still have some bad days but the good days are outnumbering them now. as long as this is taking, I'm coping okay. i have medicine that helps and support from all sides. I will get through this.

here's a reminder to eat today if you haven't, drink some water, and go to bed if it's 3 am. your body might fail you at times but it's the only one you get--take care of it.

3 months ago (edited) | [YT] | 811

mata schmata

hii everyone... another update

i got around $1000 ($900 after ko-fi's fees- which i underestimated tbh.) in donations in the first 24 hours, which is why I closed them. I don't think we are going to need more than that (at least I hope so.) I didnt expect to get more than maybe $100 max. I don't want to take more than I need, so they were closed, but I still appreciate it immensely. If we end up needing more I will open them again.

the air filter seems to be helping a lot, i've had a lot more energy and have even been able to spend some time out of bed without sedation. i'm back up to around 104 pounds, but eating solid food is still really difficult. there's only so many calories you can get in your body every day with nutrition shakes and Ensure alone.

we still aren't quite sure what the root of the problem is. right now we are trying to knock down things that could be exacerbating it.

one theory my pcp proposed is that a 2.1 cm kidney stone the ER found is causing my autonomic nervous system to malfunction. i will be getting my heart checked on the 2nd, and if all is well i'll be having surgery hopefully soon after to remove it. the cardiologist will also hopefully be able to either find or rule out other potential causes or contributors. i'm seeing pretty much every specialist in the books over the course of the next 2 months.

if it seems like months is a long time to be dysfunctionally sick, it is. but this is actually the "urgent" version of scheduling appointments with the state our healthcare system is currently in. i would be waiting even longer if my symptoms weren't so acute and my PCP wasn't supporting me so heavily.

thank you all again for the support, checking in and well wishes. some of these days have been incredibly hard, and i really have needed to hear it.

4 months ago (edited) | [YT] | 663

mata schmata

I've gotten $300+ in donations since I originally posted the video, thank you all so much ;;

the first priorities are to treat other health problems that we believe may be contributing to the severity of my symptoms--an air filter for my asthma, and an expensive supplement that manages a genetic deficiency. I've been going without either for a while due to monetary constraints, and I'd noticed the decline in my health even before the crash, so it will certainly help me feel a little better.

thank you again, so, so much.
i'll try to continue posting updates, including my condition and what else the money is being used for so everyone knows how much their contributions are helping. thank you.

4 months ago (edited) | [YT] | 673