Friday, October 18, 2019

updates

Sorry for the lack of updates, I'm still alive. I been having some more health problems because it's fall and my symptoms are always are worse then. My doc and I suspect that I have MCAS, which I have posted some info graphs below for you guys. People with hEDS and POTS/Dysautonomia often suffer from Mast Cell Activation Syndrome. I fit the criteria I just need to get the testing done, but this is not a fun disease. I can have and develop anaphylaxis reactions to basically everything. I have to go on this low histamine diet and cut out pretty much everything that I love or risk being constantly ill. Fresh fruits, vegetables, and fresh meat or fresh fish mostly. I can't do anything fun. No alcohol or fermented beverages, no fermented foods, no pickled or canned foods, no dried fruit, no processed or smoked meats, no aged cheeses, no shellfish, no nuts, no beans and pulses, no chocolate, no vinegar, no preservatives, no artificial coloring, no citrus, no nightshade vegetables, no black or green tea, but at least I have coffee! I can't eat out ever again, which I probably wasn't going to anyway, since I nearly always get sick at this point. I am just so fucking mad that there is so little that I can eat. Going gluten free was bad enough, I dunno if I can cut out everything I love to eat. But at least if I end up needing a feeding tube my best friend will already have one and we can be tube buddies.

I just want a tiny mold free house that I can hobble around with a backyard for my dog and space for a garden.

If you can spare anything, please check out my website and donate to my Amazon wishlist for various medical supplies I need. I'm constantly updating it with various things that could help make my life a little easier and a little more accessible, or will help relieve symptoms. Now here's some facts!

Monday, September 23, 2019

Bleh

If anyone can donate to my PayPal, that would help me be able to see my therapist on Friday. I have had an abusive experience recently and my medical credit card is in the negative, so I don't have any way to pay for my session.

We haven't found a house yet, but we have semi stable housing for now. I'm probably going no contact with a family member that was shitty to me cuz I don't want to tolerate abusive behavior. I am safe, and husband has been very supportive of my decision. I am exhausted because the situation put me into a flare later that day.

I hate to beg right now. Unfortunately I don't have a lot of family financial support and I'm chronically sick, so doctors appointments add up, and so does medication. I haven't been able to go to therapy for about a month, when I should be there once a week per my doctors orders. Hubs works two jobs and we still can't afford meds and copays. I cannot work because of my health. So I need community support to help us get through this period of time.

My links are in the sidebar, or go to girlysatan.com and try the links there. I appreciate any help at all and there's a variety of places you can donate.

Tuesday, August 6, 2019

Oh jeeze

I am freaking out about my situation. TL;DR too many bills, not enough income since I'm unable to work. If you can donate, please help.

I am in a bad place still with finding housing. We can't find a place to live because it's impossible to find something in our range. I also have $130 electric bill from the air conditioning because I can't maintain my body temp correctly (thanks dysautomia, and my hEDS). I also have gotten a carecredit bill for when my dog died that's about $600. The lowest cost pain meds I can get are $30 which lasts me about a week. I can't work. My body is a piece of shit that doesn't work but I'm still not on disability yet because it's a long process.

I also can't fucking stand that every time I get up or move around I injure myself. My legs and ankles are covered in bruises and my hands are covered in cuts because I keep accidentally hurting myself. I can't do dishes anymore because I keep accidentally cutting my hand on everything. It's almost like my collagen sucks so I'm fragile and take a long time to heal or something.

I redid my tumbler and I think I'm gonna put most of this emotional stuff on there. I need something to talk about how the world is ending and everything is terrible.

But at least I'm drawing again. I been working on making some fan art because I need to focus on something I can control. Hopefully I'll be posting something soon.

Still working on AlbiaSquared, don't worry! Been messing around with insects a bit to add some life into the game. Also my big project is the different birds I made.

Monday, June 24, 2019

If you're suffering, keep going

I'm sorry, I know I have been screaming about how difficult shit is here. It's been a ridiculous struggle.

I might have secure housing soon. I'll have a basement but everything is on one floor. This is going to improve my energy a lot and I'll be able to work on things I want to work on again.

I have my diagnosis and I'm working on disability paperwork.

My psych meds are at a great spot. They aren't too high so I'm not experiencing increased body heat, which was why the last few summers I've been having a really hard time with the heat. This year I don't feel like I'm constantly sweating, thank the gods.

Therapy is at the point that I don't need to go every week anymore.

I am working on things I like even though it hurts to do it.

Pain meds are still out of my grasp but kratom and medical marijuana seems to be helping some of the pain. I am at least able to get my hygiene taken care of.

Did you know that most of those tv infomercial things are for people with disabilities? Lots of stuff like slapchop and the vegetable salad bowl cutter help people like me who don't have much strength be able to prepare food. Even the snuggy was made for limited mobility people. I'm still finding more stuff that can be useful and I'll put it in a wishlist. I used my grabber the other day to clean up stuff off the floor and my apartment isn't a hot mess anymore. These mobility supportive stuff really helps.

I have opened up AlbiaSquared again and started working on animals again. Some of these guys came out beautiful and I can't wait to release what I'm working on.

I have added more stuff to my Etsy store so please look! I really love the pieces I have made and I hope you'll consider picking something up or commissioning me with an idea for a nerdy piece. I've started making two more coasters yesterday. I'll also be streaming some of the code work this week for AlbiaSquared. Please consider donating! I also opened up a channel in discord so you can talk to me about any bugs you found.

Things are improving but it's still rough every day. I'm happy to be doing things I enjoy again.

Wednesday, June 12, 2019

yikes

I think I might be screwed.

We have a month left to try to find a home and put an offer in. Most of the houses I have been having problems with is because they are not accessible enough or they have something that violates FHA. Hooray for discrimination!

Capitalism doesn't care about us, because I have genetic health problems that cant be controlled.

The planet is on fucking fire though, and I'm watching society collapse in real time.

I have lost all my fucks. I have no more fucks to give.

Maybe someone will magically buy me an accessible home, and I wont have to panic about having a stable living situation. The most accessible houses are in the 80k range and we are only able to look at 75k or less because I cant work anymore. We cant rent anywhere on Jeff's income alone. I dont know what to do anymore. I just want to live in west Cleveland. I just want to live my last miserable years in one fucking place while my body falls apart, and be able to use a wheelchair to get around in my house.

People with EDS age faster in some ways. I lose my mobility as joints become less stable and more prone to dislocating or shifting. I dislocate or partially dislocate large joints at least once a month. My ribs slipped a couple times this past month just from how I was sitting; I will be just chilling working on art, or just watching fucking Netflix, and I suddenly can't breathe. I hate it.

When is society going to pick up disabled people and support them? Probably never.

I'll probably be homeless eventually, as happens to most people with health problems.

my life is fucked lmaaoooo