#pots support

[justseveralowls]

Reminder to my fellow spoonie/ disabled humans

-your mobility aids are not ruining you aesthetic

-your conditions do not make you a burden

-you are allowed to be angry

- you are allowed to grieve

- you are alllowed to seek joy

-you are allowed to make your life easier

-Your assistive devices are not weird or ugly they help you live and experience the world

-You are lovable

-you are valued

-Struggling or having flare ups is not a failure

- You dont need to explain yourself to anyone

- Your succeses are amazing even if they dont happen in the typical form or on a certain timeline

- You are allowed to take up space

- You dont have to be productive or inspiring 

- You aren’t alone

[lost-spoons]

So I had a small mental breakdown while listening to this in the car. I wasn't sure why I started cry-laughing the lyrics (in my false vocal-cord voice), but I did. I think it's cause if you listen to the words, it describes (at least for me) the life you live and the exhaustion of having a chronic illnesses and disabilities, with the whole happy toon going in the background, while also having nothing to do with anything medical. The song doesn't single out any medical issues, it's just a song, and I like that.

Anyway, I just wanted to recommend it for my fellow POTS, EDS, VCD, migraine, chronicly ill, disabled people.

🎵 🎶 Music Therapy 🎶 🎵

[lost-spoons]

Anyone with POTS who has a port, how do you like it? Be truthful please and tell me what sucks about having it, what the maintenance is like etc.

I've been having issues with my veins for infusions. There's some kind of scar tissue build up so some spots on my arms no longer work for infusions. I had to be poked in 4 different spots this time. It was done by 2 different people just to be sure it wasn't the one nurse messing up, and it wasn't.

One of the people poking me half heartedly recommended a port if I plan on doing infusions for a long while, and idk what to do with that information (I already messaged the Dr. just waiting on a reply with their recommendation).

[s0fter-sin]

Anyone on midodrine that gets anxiety as a side affect, how do you deal with it? I use all natural drops and oils but its still pretty intense

[pots-itively-blog]

Many doctors talk about POTS as a result of deconditioning. While many people may become deconditioned because of POTS, most were not deconditioned when they became ill.

[pots-itively-blog]

ABSTRACT: This article describes the pathophysiology, clinical presentation, differential diagnosis, diagnosis, and management of postural orthostatic tachycardia syndrome (POTS), a potentially debilitating autonomic disorder that can have many causes and presentations. POTS can be mistaken for p...

The Journal of American Academy of Physician Assistants has POTS as one of its cover stories this month!  The journal is distributed to 70,000 Physician Assistants in the US. Dysautonomia International's President, Lauren Stiles, co-authored the article. Click the image below to read the full article. 

It would be a great idea to share with your medical providers and school nurses to raise even more awareness!

[pots-itively-blog]

Blood Draw

Nurse: (puts tourniquet around my right arm) What are you having your blood drawn for? Hypotension? You're so young!

Me: Well, it's something like that...*tries to explain POTS*

Nurse: (puts needle in my right arm) Oh, I've never heard of that.

Me: (wincing)...and I'm on some medication that makes my potassium low, so I get that checked too.

Nurse: (pulls needle out of my arm and stares at me) Your doctor is testing for potassium? We have to do that without a tourniquet, or it will change your levels.

Me: What?

Nurse: (preparing my left arm) Yes, it can make the levels go up and down-we're going to have to do this again.

Me: Oh...no has ever told me that before...OUUCCCHHHH

Nurse: (wiggles needle around in left arm to find vein) Good thing you have two arms!

[pots-itively-blog]

Patients with POTS Syndrome should avoid certain activities and foods. Find out more in this article by Dr. Ahmed.

These are just a few of the things I’ve learned to avoid post-POTS diagnosis...my favorite is “Doctors Inexperienced in POTS”

Anything else you have had to avoid?