first ketamine treatment

Yesterday I was out the whole day cuz I had a 4 hr infusion. It definitely gives you the spins.

Today I was able to do dishes until I ran out of room on the drying rack. Usually I am too tired to keep doing dishes and can only do a few. This is great news! I hope it continues to improve. 

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!

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.

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.

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.

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

Mr Wiggles

Thank you those who donated, because I'm gonna be prone for a few days after I have my dogs funeral tonight. Unfortunately my baby has passed on to the other side. He was such a gentle soul even though he was abused before I adopted him. And really, he helped me recover in a lot of ways after my abusive ex. At least he will always be with me.

Don't be weepy sleepy puppies
Put your slippers on your footies
In the morning you'll get goodies
Puppy hats and puppy hoodies
No stripes or polka dots
Heather Gray and feather soft
Baby pink or baby blue
All the drawstrings you can chew.

I love you baby boy. You'll always be my best friend. You can visit me any time.

Frustration

If I wasn't disabled I would have enough money to take my dog to the vet and we wouldn't be struggling to find a home. If anyone can spare please donate. https://www.paypal.me/ChristineShara

Some days are easier than others

Some days my body is in so much pain I can't really sleep. Other days I'm too exhausted to stay awake even with an 7 or higher pain, and I just struggle to stay asleep.

Today my body is on fire. I irritated my ulnar nerve so one and a half of my fingers got electricity shooting through it this second. I'm actually using Swype keyboard because then I can use a pen or just my finger to write, instead of typing everything. I could even use voice if I wanted and I probably should. Anyway, this nerve pain blows and I'm fucking over it.

I'm going to need to try another pain management place because with the EDS diagnosis it should help them take me seriously. But I was also basically semi conscious during those last couple months at work and no one helped me then so I have a lot of doubts. I just fucking can't anymore with this nerve pain. It's so bad I want to cut my arm off.

I think the worst thing about this is I painted for a couple hours and my reward is this bullshit pins and needle garbage all the way down my arm. I wanted to fucking paint so my body says "fuck you for making me do things".

My mental health is okay ish but lately I have been feeling very little hope because my body sucks so much. I had to give up on my dreams of being in the medical field at all. But after my burnout it's impossible to go back. Maybe I'll be able to get the correct meds so I can work in the lab again part time but I really doubt any one is going to help. Maybe I could work in a wheelchair, but I really doubt I'll get hired. Regardless of the law, people would not hire me knowing I'm disabled. I had enough discrimination at the Cleveland clinic for my partial disability, and every lab was real excited about me until they learned I had limitations. That's just how the fucking US is.

Someone just buy me some art supplies for my store so I can stop thinking about how much everything is stacked against me. I am afraid to hope for anything anymore.

I have a diagnosis

I have a diagnosis and its EDS. I was right all this time, that something was wrong with my body. Years of people telling me that its just in my head, that I was faking, or whatever, they can suck it. Everyone wanted to blame my anxiety and depression instead of taking me seriously that I was in extreme pain. Honestly I'm surprised I even worked as much as I did, after I subluxed my hip at work more than once.

Basically this disease means my collagen is shitty, so a lot of parts of me are not good at what they do. What parts of me are effected? My veins, my skin, my joints, and you know... all my organs. It's why I have a reaction to wheat even though I don't have celiac disease. It's also why I couldn't see out of the periphery of my eyes the last few months I was working, because my veins aren't elastic enough to keep my circulation going well. That, plus the mitral valve prolapse, and the POTS, all contribute to my problems with stairs.

The thing that sucks is doctors are terrible in Ohio about pain. Tons of doctors ignore POC complaints of pain, so I have little hope that I'll be able to get pain medication besides medical marijuana, which makes me unemployable in the state of ohio because you can get fired for using your medication. If I could get actual pain medication I could probably return to work, at least part time. But right now I doubt that's going to happen because of the opioid crisis, even though it was fucking started by pharmaceutical companies who knew how addictive that medication was. This is some bullshit I cant do anything about that ruins my quality of life, but you know mY pAin IsNt ReAl.

Please pray, or whatever religious thing you do, that I can get a home soon. I don't know if we'll have enough for a down payment, so please help us if you can. I did finally sell some jewelry so hopefully I can make something out of the wreckage that is my life. Writing has been a struggle but I'm starting to get a pattern down. I have hope but not a ton of it.

Damn that's cold K

Was my broken heart 

         enough

                            for you?

No, you needed 

                            to 

             take 

        

                    everything

Was it enough to destroy my livelihood?

No,

you needed

                         to 

                            break me.

I know you 

                 

                   don't 

                                               even     care

But did you ever?

Was I foolish to let myself love you? 

We can't control who we love

No

   

                 I was not wrong

YOU

                    were wrong

You were wrong to take it from me.

                        I gave you this gentle light

                                                                    and you smiled

                                                                while you smashed it.

If I die, it was because I couldn't take the pain anymore

I am no longer on muscle relaxers which means my muscles are gonna start twitching again. My fatigue is going to triple and I already feel like I'm carrying a hundred extra pounds. Most of my days are going to be spent in bed because I'm either too dizzy to stand or the fatigue is so bad I sleep for most of the day. This is what I get for asking for help, getting my meds taken away again. I'm never going to have a normal life if doctors keep ignoring what I'm going through. Is the pain not enough? Is me not working enough? Is me spending the rest of my life in bed enough to get them to fucking do something? Probably not. The only medical relief I can get for the pain is medical marijuana, and even if it magically made it so I could function again, ill never be able to work because people can still get fired for using medical. So either way I'm fucked. What's the fucking point in being alive if doctors won't listen to me. I have genuine pain and fatigue that interferes with my daily life and I'm ready to pack it in and just die cuz I can't deal with it anymore. I have no quality of life anymore because I can't even enjoy simple things like doing art or writing. Instead I have to think about my pain constantly or drug myself to sleep so I don't have to deal with it. But even then, the pain still wakes me up every couple of hours no matter how much otc sleep meds I take.

If I end up dying, I love you all but I couldn't take the pain anymore. I just want to be able to enjoy some games and make some art and grow a beautiful garden. I just want to be able to write again, even if I could never work again. It's not your fault, it's on the health system. I've been struggling for over a decade to get treated and I'm back to no meds again, so clearly they won't help me. What do you do? I just want my suffering to be reduced enough so I could do things that make me happy, but I can't even have that. The world still has beauty, but my suffering keeps me from enjoying it. It's a sad day when an artist can't create anymore.

Shameless Store Promo

I updated my Etsy store. My original idea for the blood pendants was to have the letter in with the red cells instead of painting it on. I got lucky and eventually found a mold with the right size letters to use, and I think they are just so much better. I have been messing around with the alcohol ink for the resin too and have made some really nice color mixes. I think they are just perfect:

I would like to use some of the bigger pendents that people can put their initials in. Ill have to see how much space they take up in the different pendents, but there are some large ones so I'm pretty sure that two names could be in there or a couple short words. This circle piece could definitely fit some initials in it with the blood type.

If you want to donate to my store you can go to this wishlist. I wouldn't have been able to do it without your donations, so please consider sending me more stuff to work with. I am slowly getting through all my shop ideas, more or less. Unfortunately I don't have a lot of energy because of my health to work every day, but I'm slowly getting there. Art brings me joy, which helps a lot.

Be kind to each other, everyone is in pain.

Who I Am

In sorting through and trying to deal with the trauma I've been in, I've realized a couple things.

I was always a storyteller. I unfortunately was convinced that I would never make money writing, that it was something I could do in my spare time (guess what, you cant), and I need to get a "real" job. I'm good with science and my dad really pushed medicine on me. I could do it, learn it, understand it, and everything, but ultimately it wasn't giving me the joy I found with writing early on. I did find joy in helping patients, working behind the scenes to help people get their diagnoses, and I helped a lot of people.

So now I cant work, because I'm sick. I have some kind of issue with my collagen because I sublux my large joints often, and every single joint in my body cracks. The joints in my ribcage pop and get put out of place. I can easily move my patella around quite easily which I recently found out not everyone can do. When I worked at the Clinic I subluxed my hip at least once AT WORK, and had to look up a video to try to put my hip back in right when I took a bathroom break to fix it. There's also this cool thing I can do where if I pull a drawer open, my index finger and pinky will shoot electricity straight to my elbow. I was also suffering from being constantly on the brink of passing out. I stopped seeing out the periphery of my vision because it was always just a constant creeping darkness. Compression socks have helped but there are still days that no matter what I do to fix my BP it doesn't work, because my veins are just not elastic enough to go back to normal anymore. I was literally working myself into pieces. Still, I miss that job a lot, the friends I made especially.

I'm looking into housing that we can afford on my partners income because I clearly cant work anymore, I literally fall apart. But I at least still have my writing. I'm going to finally finish my novel, but I suck at writing all the time so I am trying to write a little every day until it becomes more routine. Hopefully I'll be able to finish my book this year.

I abandoned my own dreams so easily, which is sad, but I was in a lot of pain for a long time and suffering alone without much help. At least I have all the time in the world now to write my heart out. I have even taken up other things that I always dreamed of having, like a garden. I would be incredibly happy to have a greenhouse because I want to grow a devil's hand tree and some other tropical plants, for spiritual stuff. I want to grow mexican marigold because I want to make a real Dia de Los Muertos altar this year, so I can spend time with my deceased friends and family.

Before I get to cracking on my novel, I think I want to do some short stories on Aztec gods. I have been reading into Aztec mythology again and I would like to write a story about them kind of like how Neil Gaiman did American Gods. The complex mythology is something that no one really talks about, and its so cool, how could you not? I was also thinking of trying out some public domain stories and what I can make with them. I just want to write more and I have been saving creative writing pins to play with in an attempt to write every day.

For my next EMDR session I think I want to work on some of the racist stuff I had to deal with as a kid and now. There's enough racism I deal with on a daily basis, and it was pretty bad when I was a kid. I could also work on my traumatic relationship with the piece-of-shit-who-shall-not-be-named, or my sociopathic ex Jack, or the trauma of just working through the american health care system. I dunno, maybe I'll roll some dice to decide.

Hopefully in the next few days I'll be writing in this every day. <3

Therapy did some good

All my characters in my book are based on me or other people. I'm currently working through a lot of abuse and neglect I had experienced as a kid, which means I'm fucked up in the arena of asking for help. I don't want to be, but I have a lot of psychological blocks there that I am working on getting past. However I did manage to beg strangers on the internet for money to help pay my medical bills, so I am kind of getting the hang of asking for help.

I have suffered so much abuse from every aspect of my life. I honestly am not sure why I am still alive. I live in pain every day which is incredibly traumatic. The physical pain is enough to make me want to end everything, but the toll on my soul is devastating. I have suffered sexual assault, domestic abuse, neglect, even some physical assault. These are all incredibly terrible just on their own and it kills people daily. And I have met some incredibly strong people who have suffered much worse than I have and I marvel at their strength. Its not a competition, terrible things happen to people all the time because life is fucking terrible. Suffering is not just the human condition, but every living things condition.

We are hardwired to default with happiness because life is so fucking bad. People who are not depressed actually see positive things more frequently than the negative things. Life is so cruel and existence is so awful, we literally had to evolve to look for the good things in life so we wouldn't kill ourselves. Innocent creatures suffer and die every second of every day and that is terrible.

I have nightmares sometimes, where I am supposed to clean up these aquariums and cages full of pets that have starved to death in their cages. When I'm particularly emotional, they are half evaporated tanks that have dead fish floating in the little water that is left. When I really want to torture myself, I see mummified remains of lizards or mice or whatever else can live in a terrarium. The worst though is when I dream about dozens of bird cages that are just filled with dying birds or dead birds and a few that are somehow alive among the corpses and I try to save them every time. Why do I try to save them every time even when I know I'm in a nightmare? I can't let suffering happen in front of me and I want to unleash torment on those that inflict suffering for fun. So I always try to save those poor dying animals that didn't deserve what happened to them. Just like I never deserved the abuse I suffered.

There is one thing that pain has shown me. The most divine thing you can do is have empathy and care for others. Someone can be experiencing something I could never understand, but I understand pain. I can recognize pain even if I cant understand the details, and everything knows what suffering is, so I can connect that empathy there. Everyone deserves kindness because life is fucking cruel.

Someone is hurting you because they are hurting. Also, you hurt people because you are hurting too. Its good to recognize where you have hurt someone else and if you can apologize for it, you should.

Thanks for coming to my therapy writings.

Please Ignore this Desperate Plea for Help

Well I had a stupid meltdown today.

My insurance told me that they didn't approve covering one of my doctors visits because the office put the wrong code for the visit. I tried to explain that my insurance would cover the visit if they resubmit it with the correct code for the visit and everything from that would be covered. But instead I was stonewalled, treated like garbage, and also interrupted every time I tried to explain what I needed them to do. Dude, I am so fucking tired of insurance companies and doctors offices pushing me around because one or the other person just doesn't care that I cant pay the bill anyway. My insurance will cover it, but because I am easily confused due to my illness it makes it impossible for me to manage the health system. I am ridiculed and pushed around instead of helped. What the fuck happened to this place that I cant get some simple help with fixing a mistake that other people made? Why do we treat people this way?

Part of being easily confused is frustrating because I know when someone is being shitty with me, but I cant process anything in response. Treat me like a human being. Give me some time to understand what you're saying. I'm not an idiot, but I cant process information very well. I am tired of people being shitty and condescending to me because I have problems communicating.

I am too sick to work. I can't work in what I used to love because my inability to remember can kill someone. Being confused easily is not a good thing when you are trying to test biological samples. At this point it's so bad that I can hardly remember what task I was going to do five seconds before. Its not a problem with me when I'm working on coding, but that can be real bad for someone who tests blood for a living.

Also because I have problems trying to remember, I actually forgot to pay my utilities last month because I literally thought I paid it. Now they want the money for two months worth of utilities in my gas and electric and we cant afford it because we were already living paycheck to paycheck. I have like $300 due in utilities and I have to hold that off because I needed to take my sick cat to the vet.

I am powerless. I feel so fucking powerless because my disease makes it impossible for me to manage my life that most people would never have problems trying to resolve. I have two degrees and an associates and I cant work even though I have so many qualifications. I feel like I was put in someone else and any accomplishments I made don't matter at all. I would like to get help so I can be put on disability but I'm too confused to manage the system on my own. I need help but I don't know what to do or who to talk to. I have considered divorcing my husband so I can get on SSI because we make too much. I cant even get food stamps because we make too much. I have lost 20 pounds because I have to stretch my food budget for myself so I can take care of my animals. I used to be able to take care of them. I am afraid that I can't be the fur mom they deserve anymore because I am in a broken body. My bird is bonded to me which means a lot of distress for her if I give her to someone else that can take better care of her. I shouldn't have to throw everything in my life away because I am too sick. Besides, my animals have been one of the only things that kept me alive. Do I need to sacrifice everything that comforts me when I have so little to hang on to in the first place? I don't have enough money to pay my bills so apparently that's what I need to do.

I don't know how to get help. I'm afraid that this disease is going to kill me. The pain I feel constantly drives me to consider ending everything. My powerless life makes me want to just cease to exist. Somehow I am still around regardless of all that, but my disease is going to kill me one way or the other.

This reality sucks.

Everything hurts and I'm dying

The last two weeks have been really rough on me. I been around a 9 most days, and barely have been able to get out of bed. Been averaging 500 steps for the whole day. I am so miserable. I tried a percocet to see if it would help my pain. It did nothing at all. So really this tells me I should be on stronger pain meds, because whatever I'm doing isn't doing shit to help with the pain. I'm at a complete loss. I also managed to be late on some bills because I thought I paid them, but my fibro fog brain was just tricking me. I need to come up with money out of nothing because my disease screwed me over again. I have no idea what to do. Being disabled is so hard and if I want to get SSI I discovered today that I likely need to get a divorce. This country punishes people who get sick. I didn't ask to be this way.

I'm so so so tired. I'm tired of being in pain and having no life. What can I do? I am trapped in poverty because of illness. I'm stuck in my bed because of illness. I plan to stream the next few days because I have to beg for money again. I don't see the point in trying to live in a society that punishes me for existing. I'm trapped.

I think it's time to write articles about how screwed so many of us are. It's not just me, it's so many people.