Chronically Ill - Blog Posts
I'm not just overdramatic, I'm also overstimulated
Mom: She is nearsighted and has a stigmatism.
Me *finger guns*: Yeah I do!
Mom *disappointed look*
Me finding a new recipe I like: This is really good!
Also me, a Potsie: Now, how much salt can I hide in this?
I do the dancy dance to get in my panty pants.
It feels like there is a little man under my kneecaps trying to get out
My toxic trait is that if I can't find anything I want to eat, even if I'm hungry, I won't eat at all.
I hate having functional weakness. I can deal with it in my arms and legs, but I absolutely hate it when it is in my jaw.
I can't talk, eat, or drink and when people talk to me, I seem rude. (Unless I'm with someone who knows about it.)
It drives me nuts.
Everyone is preparing me for the day I get better.
No one is preparing me for when it's not.
beep boop bones go crunch
beep boop bones go crunch
You don't feel like wearing your compression socks today?
That's fine,
But just think of how good your calves would look if you did.
I weeble and wobble and sometimes fall down.
Happy National Rare Disease Day!!!
February 28th is National Rare Disease Day because the 29th is the rarest day of the year.
How do you politely tell a doctor to fuck off?
Tis' my birthday and I am now officially the dancing queen, young and sweet.
(I am in so much pain)
There was a dude who looked like Elon Musk in the ER.
There was a dude who looked like Elon Musk in the ER.
Can we have cane nooks in public bathrooms?
Like I was just in a library bathroom and my cane kept sliding while I was washing my hands and it was super hard to hold onto my cane and wash my hands.
It would be helpful if there were dips in the counter in-between each sink so I can rest my cane in there and not have to worry about it falling.
This is aimed more towards the Service Dog community...
Okay, so I have had multiple diagnosis over the past few years. My lovely list includes POTS, hEDS, essential tremors, ect. I am a Junior in HS and I am wanting to owner-train a service dog. My mom thinks that exercise and medication will make me better. The meds that doctors have previously given me haven't worked and I just got an exercise program that is specific to my conditions about a five months ago, and have seen little improvement. I rely a lot on my mom to help me do things and when I get to college, she won't be there to help me anymore. I want to become more independent and really struggle to do so now.
We don't have the money to get a dog professionally trained and I have made it clear that I would be willing to put in all the work. My mom has said on multiple occasions that when our *pet* dog dies, that she doesn't want any more (not because she hates animals, but because she loves to travel) I have explained that a service dog is not considered a pet and that it is a piece of medical equipment. She also says that I can just use our arthritic 8yo dog instead of getting an actual sd because I will get better and won't need one later on. I have done extensive research on what breeds that would best fit my needs, what tasks it would need to learn, and how to train them. I have also spent hours upon hours reading our local and state laws as well as the ADA's.
So...I guess my question is, when did you know that you needed a service dog? And how can I convince my mother?
Edit: She is now saying that if I get a Service dog, our pet has to go live somewhere else.
I don't just drop it hella low...
I just drop
Anybody else have a sensory problem with wearing a winter coat indoors?
Like, I can't wear a coat in a freezing car because it is too much coat.
Some fun things for my chronic babes - keep all hospital bands from the year and use them as ornaments during Christmas time!
Bonus points if you can get like an x-ray as the tree topper.
Pro tip for my cold babes - put a glass jar of water on a candle warmer and whenever you get cold, put your hands on that. It feels so warm - but not too hot. For an added bonus, put some essential oil in there to make the room smell good.
I have a really safe candle warmer that is away from my dog and I can leave it running for a few days at a time without burning my house down!
If you want to try this, make sure to do a trial run by monitoring it to know if it gets too hot.
I was in the ER overnight and didn't get home untill about 5:00 only to be told that my blood work is normal and I should follow up with my specialists.
That's how my life is going.
Current status: laying in the locker room of another school's homecoming without being able to put my feet up to get blood back up to my brain. I can't put me feet up without showing everyone my hoo and my haa due to a short dress. And there are at least a dozen other girls around me.
My body wants me dead and humiliated.
So I have started a thing to motivate me (kinda)
I have a jar next to my bedroom door and everytime I have a good health day, I put a tiny piece of origami in it
My friend (@ask-and-i-answer ) wanted to do something similar so we came up with a mug and money system. The bigger the coin, the bigger the pain she had that day.
For example: a quarter would mean that she was having extremely bad pain and a dime means very little pain.
Does anybody else get dizzy or have symptoms flare when saying prayers?
At my family Christmas lunch, we all said a prayer before we ate, and it made me so dizzy and nauseous that I couldn't eat much.
I hate that my leg hairs hurt from wearing compression socks daily. Like, yes I put lotion on every night and yes I have days off, but can my pants just not tough my leg without feeling like I'm getting stabbed with safety pins??!?
The universe cursed me with being a hairy person with extra long legs and not energy to shave them.
Question fory adult Potsies - what were some signs that you were not going to outgrow POTS? I have been having symptoms as far back as I can remember and want to know how I can prepare for my future.