crpssucks

[crpssucks]

I should also add my hospital decided to fire the whole fucking department that housed all of my specialty doctors so everyone that was dealing with long term issues like me lost their fucking doctors.

This is causing MAJOR chaos in my life right now. We are trying to find ANYONE who could possibly understand crps but the fight to find my last doctor was over TEN YEARS LONG.

[crpssucks]

⚠️ Trigger warning ⚠️

I went to the ER because my throat hurt so bad it got to the point where I started to not be able to breathe.

That on top of my regular pain became overwhelming and I forced myself to go in.

I waited hours to see someone and all I could think was “They really make people wait in uncomfortable chairs and make them pay for food and drinks in the waiting room” — why not have comfortable seating- beds- and free food/ beverages for the people feelings terrible and paying thousands of dollars to be here? Because capitalism of course.

They think I’m having an allergic reaction to something.

When I got home I fell asleep for two days straight and then by the time I woke up I was so depressed thinking back on my time in the ER I hurt myself. I didn’t even think about how I know have CRPS in my arms so it would only cause me more pain… I was so dumb but I just wanted some sort of way out of the torturous feelings I was having, or maybe the void of torturous feels I felt myself callings into? Because once the torturous feelings stop and the void comes… there’s no coming out.

[crpssucks]

Doctor told me I’m getting better because my ER visits are getting farther apart- Even though I just went.

I reminded my doctor I choose not to go to the ER because they injured me further the last time I went and it was a traumatizing experience. (The only reason I went this time was because my mother forced me in fear I was having an appendicitis.)

He told me I was only making things worse by reminding myself of a traumatic memory.

It was a very confusing doctors visit.

[crpssucks]

I keep getting fatter and my oversized sweater keep getting regular sized. 😫😫😫😫

my oversized sweatshirt will protect me from Everything

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My family is gathering together opening presents and I wanna puke.

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When I realized I shouldn’t feel the terrible way I feel all the time or I shouldn’t have the compulsions and intrusive thoughts I have, and was given medicine my life was changed.

I’m not all better and I still struggle everyday but learning that other people don’t experience the feelings you do it’s important. I thought everyone was going through life like me but they weren’t.

My family wasn’t terrified of everyday life or so hopeless they wanted to give up every second.

When I was given the right medicine things quieted down in my own head and I had my first taste of a silence- that’s what they were experiencing- silence. Hearing their own thoughts. If there were doubts, it was their own doubts. Doubts that made sense.

I felt courageous. More like myself and for the first time I got to learn who that was without anxiety and fear pushing and suffocating me like walls closing in and squeezing my brain. I haven’t physically hit myself due to hating thoughts that feel foreign in months.

So, yeah. We all have feelings of depression and anxiety but we all do NOT experience them the same way.

Feelings

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My doctor: “You haven’t been in the ER for a while now and that’s the goal!”

Me: I actively don’t go to the ER because every time I do an asshole male doctor first makes my pain worse by touching and hurting me before deciding what I already told him is true and gives me meds that make me sleepy because he can’t do shit then sends me home still in pain just to wait a month to see you cause you are a busy ass specialist.

My doctor: BUT WE HAVE MADE SO MUCH PROGRESS

Me: I am also high risk for covid and don’t want to sit in a ER for hours with strangers while I’m in terrible pain risking me and my family getting the virus.

My doctor: But you aren’t going to the ER so you must be doing better!

Me: *internally shatters*

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Disabled doesn’t mean I don’t want to party.

Because of my disability I lost out on all high school/ college experiences. I was forced to drop out after 9th grade and have never been able to keep any sort of stable routine long enough to have friends.

Halloween is always one of the saddest nights of the year because I love to dress up but I haven’t because I get so depressed having no where to go.

So, here I am again. 23, alone, 12:09am alone on Halloween wishing I just had some friends who encourage me to make a slutty wheelchair friendly costume and hit the town or even just watch moves all night…

Me being in pain and unable to walk doesn’t make me less of a 23 year old.

[crpssucks]

I watched Squid Game dubbed with subtitles.

I also have a disability. I am in so much pain all of the time it is almost impossible for me to take in information unless I can hear, see, and read it.

I am seeing so many people making fun of people for watching Squid Game dubbed and I thought we already got over this in the anime community?

There are so many people unable to use subtitles disability or not. Whether it’s dyslexia, ADHD, visual impairment, ASD, Chronic Pain, Slow reader, having to do chores while watching it, or just not wanting to. It’s fine to watch dub.

There are SOOO many reasons. I know some people think they are joking when they write these comments but when they pile up they make people feel shitty.

The important thing is that we are all connecting and appreciating the same art.

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I had a ketamine infusion yesterday. When I went in I realized I was assigned to a nurse that I had met the week before who had left a bad taste in my mouth… she had came in and talked herself up about being the best IV nurse and then proceeded to poke me 6 times before she could get an IV into me.

This time she came in and pretended like she didn’t know me and looked at the bruises on my hands and commented about how “they really beat you up” as if it wasn’t her doing. I let this go. She got the IV in on her first try thanks to my preparing my veins with fluids the night before and she took all the credit with her expertise.

Then she sat down and started asking SO many questions. More than any nurse had asked before. I felt annoyed and just answered without thinking wanted her to leave until she started being inappropriate.

The nurse began suggesting medication to me! Then she said “This sounds like a nerve thing.” (Really?) Then came the worst part. I had noted earlier that stress can makes the pain worse and went on to say “It sounds like if you could just get rid of the emotional pain your physical pain would stop.”

I was not happy in this moment. I matched her energy and told her she was wrong. I told her she did not understand my situation or what she was speaking on. I let her know I’m here because that’s not the case. She continued arguing with me saying she’s just repeating what I said earlier and to this I didn’t give in.

I was in the right in this conversation and it was obvious. At some point she apologized but right before I could accept it and move on my mom jumped in and told me I was “overreacting” and needed to “calm down” I know my mom just wanted the argument to end but I felt betrayed in that moment.

And even worse… I asked for a different nurse and they told me she was the only one who could do it… so I sucked it up and had her do my treatment. I apologized for my outburst when she came back even though she ignored me totally and she acted like she was friends with my mom. ( I know she should have been the one to apologize immediately as soon as she came back )

I spent the whole 4 hours of the ketamine treatment super stressed and on guard. I felt like I couldn’t rest the whole time- like I had to be watching my back and now I just feel extra puke-y afterwards ya know? I wonder if being so high stress during the treatment messed with me. I know you are supposed to feel safe and calm during it… I dunno

[crpssucks]

When I was little I was diagnosed with OCD and dealt with intrusive thoughts and obsessive repetitive behavior sometimes to the point of self harm.

When I got older and was diagnosed with CRPS people stopped talking about my OCD. Recently, I’ve realized those thoughts and behaviors have never went away. I am going to move forward in letting my doctors know I need this to be part of my care.

I think it’s import that we don’t let other issues fall to the side even though CRPS takes such a huge amount of effort to live with. Hopefully with some treatment for OCD it can help me in my goal to live a better life even with such pain.

But at the same time choose your battles. YOU know yourself best. Find all the things weighing you down and strategically take of the weights you can handle because no matter how small- you are still getting lighter.

[crpssucks]

The amount of times people turn off the lights when leaving a room I’m still in…

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I’ve always thought about starting up a tik tok to talk put a face to these ramblings-

I’m so nervous to even show my face online.

I don’t know, would any else be into it?

Like do you think it would help you to see someone on tik tok actively talking about their CRPS and invisible disability?

That wouldn’t be my whole page because everyone need a break 😮‍💨

I wouldn’t do it if it wouldn’t help any one

Just a thought

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I am making a formal complaint and then story time lol

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Guess who just stomped out of a hospital screaming a cursing because of a doctor being unnecessarily cruel?

That’s right- you guessed it!

Ya girl!

Story time coming after I put on a fake smile for my sisters baby shower woo hoo~!

[crpssucks]

Is it an American Stereotype that we don’t have any teeth because it cost too much to go to the dentist?

It should be-

Spread the word guys~

Mercia’

[crpssucks]

Trauma Treatment

Doctor: Have you sent in an application to be participate in Integrated Trauma Treatment Center yet- it’s part of your treatment plan.

Me: Yes, I’ve already been accepted in and have my next appointment tomorrow actually.

Doctor: That is great! How’s is going for you?

Me: It’s rough, but I’m working really hard…

Doctor: *Genuinely confused* Why? Why, would you be having any problems?

Me: Well, I guess I knew signing up for TRAUMA TREATMENT would be hard work-

(This doctor so far has been great to me and the only issues I’ve run into have been because of my own trauma though- not bashing this doc just sharing a funny moment lol.)