#pots syndrome

[dog-gutz]

I met with my psychiatrist today, who is absolutely wonderful, and asked for her opinion on what my cardiologist had told me. She basically said, that because my symptoms started before my medications, it is unlikely the medications have caused the symptoms I'm experiencing. She said a lot of doctors see people who struggle with psychiatric problems and blame those problems/medications right away, but she said she would seek a second opinion. She also said that if she ever makes me feel like this doctor has made me feel to tell her, because she never wants to make me feel this way. Seen as my psychiatrist has known me for almost a whole year now, I'm going to trust her judgement and agree with her, and go see this new doctor in May and see what he has to say. I can't even express how much I appreciate my psychiatric care team, they do so much for me and always listen, I can't imagine seeing anyone else.

[wormslikeme]

Yearning ahead

Being chronically ill for me is wanting so desperately to ask for comfort (for me it’s mostly physical comfort I need) when in pain but being too:

A) anxious that people will reject me/take it the wrong way

B) not wanting to bother anyone, so I just sit silently in pain

C) wanting so desperately for someone (anyone at this point) to just like…..be physically there for me when I’m suffering.

Like when I have a migrane all I want is for someone to hold me and tell me it’s going to be okay. It may not make the pain go away but it would sure beat crying into my pillow and gripping it in a pitch black room while I try not to throw up from pain. Completely alone.

[disagigglebilities]

Disability hearing went weird today. They had an "expert" cardiologist who completely ignored my diagnoses and then proceeded to tell the judge he thought I had somatic symptom disorder.

I was literally sobbing by the end of his testimony and the judge practically booted him from the call as soon as was possible. I now have a psychological evaluation sometime in the next month.

My lawyer said the judge appeared to not be happy with the way the "expert" treated me and my health issues and that the so called "expert" had been super unprofessional and that all and all it might end up helping my case still. But damn talk about traumatizing as fuck. My friend had to calm me down after all was said and done, I was crying so hard.

[vtk13]

“slut era” i whisper to myself as i rot in my bed, sick like a frail victorian child

[potsiepumpkin]

When the chronic fatigue is chronic

[thelupuslady]

Needed my own reminder for my stubborn ass.

[stellaltumi]

stop villanizing disabled people. stop assuming we're just being lazy. stop assuming we could be trying harder. stop assuming that we'll "feel better" in a few weeks. stop assuming that we have the same energy levels as everyone else. thanks for coming to my ted talk.

[mybodychoseviolence]

“surely this will not cause my chronic illness to flare up,” i say, actively doing something that has never failed to flare my chronic illness

[butchboybisexual]

able bodied people, ask yourselves this:

is your disability allyship conditional, or convenient?

will you be willing to not use fancy fonts or symbols if someone with a screenreader asks you not to online?

will you judge someone with an autoimmune disorder for having skin infections you deem gross or unsanitary?

when a deaf person speaks differently than a hearing person, will you still take them seriously?

when a nonverbal person needs an AAC or text to speech device, will you still include them in your conversations?

when your mobility aid using friend needs help in an inaccessible area, will you wait up for them, or help them if they ask?

when someone with tourette's is having trouble getting their point across because of tics, will you be patient and listen?

when someone with a stutter is having a conversation with you, will you take them seriously?

will you listen when someone with an invisible disability needs the big stall, or the accessible seat on a bus?

When your college with POTS needs to snack on salty foods, will you find them annoying?

when a person with hyper-mobility stretches and their arms bend out, will you stare?

[1980s-slasher-film]

Accommodations are not special, they’re not a leg up, they’re not a benefit. They’re not putting anyone ahead in the race, nor are they taking anything away from others.

They exist to put us on a level playing ground to everyone else, and nothing more.

[dog-gutz]

Today I got an echo cardiogram and a heart monitor placed. If my horrible cardiologist did anything she at least did this for me. Molly was such a good girl for the whole procedure! She laid quietly the whole time, only moving to alert or when instructed to help me sit up from the bed.

I did get approval for her to be on the bed with me during the test, as I have a hard time sitting up and need assistance with almost any position changes. The tech said as long as she didn't get in the way, it would be fine, and Molly's a great dog and stayed completely out of the way.

I also brought 2 of my stuffed dogs with me, the golden retriever was a gift from my Pgf, kiki, and comforted me so much, especially when they put my IV in.

Overall the appointment went great an I was so impressed with Molly!

[pots-plus-pans]

destigmatize having a body/body parts that look “gross”

destigmatize having a reoccurring rash that you can’t control

destigmatize “strange looking” veins

destigmatize “gross” scarring

destigmatize having bodies that are broken and express that

destigmatize being disabled and having “atypical” physical manifestations of said disability

disabled bodies are beautiful

[apologyacceptedcaptainneeda]

DONT take a persons medical device

I shouldn’t have to say that but here we are

One of the managers at work likes to take and hide peoples stuff as a joke. My manager took my pulse ox when I wasn’t looking. When I noticed it was gone I started to panic. A pulse ox is minimum $30 and I’ve had mine for over 7 years and have named it. So yeah I was panicking. I immediately paged my manager to my register and when he arrived I demanded it back. He did give it back.

I informed him that it was stupid and dangerous of him to take a medical device from someone especially like that.

So again

DONT TAKE A PERSONS MEDICAL DEVICE

[alrightiiaphrodite]

Did you grow up as a disabled person and think "man, I am shit at being a human being. How does everyone do it?" and then think you were just lazy or less motivated and start believeing everyones comments about how you have no motivation and are genuinely just lazy and then you still wonder why you're not good enough no matter how hard you try and then you get old enough to realize that not everyone experiences the same thing you do and you were just given a short straw or are you normal?

[potsiepumpkin]

Useful information

[panicismydefaultstate]

Just in case anyone else needed to hear this today-

Your health is not your fault. You didn’t do anything to “deserve” this. And you are right, it isn’t fair. You are allowed to feel upset, hurt, angry and jealous that your health, body or mind disables you.

It’s not fair, and that sucks. You are allowed to scream about that as much as you need to.