#lqts — Public Fediverse posts

Ah nuts. Guess who has four paws and forgot her heart meds last night?

Yup, @QueenieDeerhart. Totally her fault!

See, it might be MY handle on #eloton, but it’s totally her picture… right?

#invisibledisabilities #lqts.

#fursuitfriday

Ah nuts. Guess who has four paws and forgot her heart meds last night?

Yup, @QueenieDeerhart. Totally her fault!

See, it might be MY handle on #eloton, but it’s totally her picture… right?

#invisibledisabilities #lqts.

#fursuitfriday

Hey, folk who have #invisibledisabilities…. How do you explain to people that you don’t have the same body capabilities/endurance/needs as folk who don’t have the same challenges you do?

I’ve been thinking a lot lately about how to better explain to folk that my body is always operating at reduced capacity because my #donotdie medicine slows my heart rate and thus, while I’m fit and strong, my body tires more easily than it might otherwise do.

I can say “oh, I have #LQTS” but folk don’t really get the implications. I can say “remember that person who died from drinking an energy drink/super caffeinated beverage/too much coffee?” And they get that… but… It doesn’t translate to “I GET FUCKING TIRED EASILY AND SOMETIMES I JUST CAN’T FOR A FEW DAYS BECAUSE THE MEDICINE THE KEEOS ME FROM HAVING A CARDIAC ARREST ALSO GIVES ME SUPER LOW BLOOD PRESSURE AND LOW HEART RATE”

I’ve had some friendships end because people thought I was always bouncing because I didn’t want to hang but the reality was I was just exhausted… and some folk don’t get that I sometimes have to change plans because body…

I can’t be the only one

Thoughts?

After dealing with #tsa at #pdx yesterday I have a bit of an update on the usual rubbish I get at #tsaPre.

It’s only at #PDX and only on the D and E gates.

My #AED apparently attracts extra attention because it has “organic” components (they said the battery but I don’t believe them). It’s only at that airport and only that security checkpoint, where they’ve broken my AED multiple times before.

Apparently, they feel me carrying an AED is overkill because they have them at the airport and on planes. However…

1) My cardiologist agrees having one is a good idea when I’m away from home with people who don’t know I have #LQTS.

2) 20 years ago, I’d already have an #IED, but the surgery is invasive and so they no-longer implant until you’ve HAD “MyFirstCardiacArrest”

3) Public AEDs are rarely kept in good working order.

4) Our family appears to have a super-rare version of LQTS that becomes more problematic as you age.

5) People don’t notice a medialert. They notice an AED.