#lqts — Public Fediverse posts

The absolute worse thing about having #AuDHD is that I ALSO have #lqts, and that means when I hyperfocus for the entire day (designing a PCB) I don’t drink or eat properly. Then my body gets out of whack FAST. LQTS is exacerbated by poor electrolyte levels…

The absolute worse thing about having #AuDHD is that I ALSO have #lqts, and that means when I hyperfocus for the entire day (designing a PCB) I don’t drink or eat properly. Then my body gets out of whack FAST. LQTS is exacerbated by poor electrolyte levels…

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

Good news, everybody!

I know this is very personal and it's all about my #LQTS, but I went to my annual checkup with my #electrophysiologist today, and he agrees, in light of my losing weight, I can drop my dose of beta blockers to one a little lower!

This is amazing, because while said medication makes it harder for my heart to do dangerous things, it also now means my blood pressure and heart rate are way too low. Getting fitter natrually dropped both, and now they're too low.

So yay?

Good news, everybody!

I know this is very personal and it's all about my #LQTS, but I went to my annual checkup with my #electrophysiologist today, and he agrees, in light of my losing weight, I can drop my dose of beta blockers to one a little lower!

This is amazing, because while said medication makes it harder for my heart to do dangerous things, it also now means my blood pressure and heart rate are way too low. Getting fitter natrually dropped both, and now they're too low.

So yay?

To those of you with chronic health conditions that zap your energy (bonus points if you're neurodivergent).

How do you tell the rest of the world you're not only out of spoons, but forgotten what a spoon is?

By Friday, my LQTS + overwork + exhaustion from existing in a neurotypical world has me... just about breathing. Everything else is a bonus feature that requires dumping memory cores.

I’ve lived with #lqts for years… but only really started thinking about how I do life… and how others cope.

#illness #chronicIllness #neurodivergent

To those of you with chronic health conditions that zap your energy (bonus points if you're neurodivergent).

How do you tell the rest of the world you're not only out of spoons, but forgotten what a spoon is?

By Friday, my LQTS + overwork + exhaustion from existing in a neurotypical world has me... just about breathing. Everything else is a bonus feature that requires dumping memory cores.

I’ve lived with #lqts for years… but only really started thinking about how I do life… and how others cope.

#illness #chronicIllness #neurodivergent

I hate #lqts

I’m exhausted. Wiped out! My QTc is above 500 ms and I feel like I’ve run a marathon.

Screw my body.

Placed a call to my EP’s office because I haven’t felt this crap in a long time.

I hate #lqts

I’m exhausted. Wiped out! My QTc is above 500 ms and I feel like I’ve run a marathon.

Screw my body.

Placed a call to my EP’s office because I haven’t felt this crap in a long time.

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?

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?

So close… Gah.

I’ve worked out 183 days in a row, and even splitting between cardio and strength days, I’m still hitting my cycling out the park.

Sad I am not really super safe pushing it out in the real world because of #LQTS, but at least I can at home!

#peloton

#LongQTSyndrome (#LQTS) is a pacing condition that can cause an irregular heart beat that, in extreme situations, can cause your heart’s chambers to beat out of order, causing a Cardiac Arrest. Simply put, it can kill you.

#LongQTSyndrome (#LQTS) is a pacing condition that can cause an irregular heart beat that, in extreme situations, can cause your heart’s chambers to beat out of order, causing a Cardiac Arrest. Simply put, it can kill you.

Well arse.

I’m having long conga lines of PVCs….

I’m off to bed.

#lqts #heart #betablockers

Should I make more posts about living with #LQTS?

Urg. My body hates me.

In addition to hovering around the mid 40 bpm all afternoon, my QTc is hovering around 500ms, and I feel like poop.

I’m going to bed because I’m exhausted. Also I fell over. And I have pins and needles. And I’ve had palpitations in extreme today.

Seriously, my body sucks.

I’m tempted to skip my meds but I know that’ll be even worse.

#LQTS #heart

Urg. My body hates me.

In addition to hovering around the mid 40 bpm all afternoon, my QTc is hovering around 500ms, and I feel like poop.

I’m going to bed because I’m exhausted. Also I fell over. And I have pins and needles. And I’ve had palpitations in extreme today.

Seriously, my body sucks.

I’m tempted to skip my meds but I know that’ll be even worse.

#LQTS #heart

My wonderful #valentine.

She doesn’t like being on the roof at all, but on Saturday, when my blood pressure was low and my heart rate was very bradycardic, she came up on the roof to help clean the gutters.

She even went up on the second floor when I was struggling, took over, and got me down safely.

I hate #LQTS
But
I love you, @amerikate xxx

My wonderful #valentine.

She doesn’t like being on the roof at all, but on Saturday, when my blood pressure was low and my heart rate was very bradycardic, she came up on the roof to help clean the gutters.

She even went up on the second floor when I was struggling, took over, and got me down safely.

I hate #LQTS
But
I love you, @amerikate xxx

Well, I just sent the message.

I don't *want* an ICD, or an S-ICD. Honestly, the surgical implications of this and the change that it could make to my life are *massive*. However, I also don't want to land in a place where I can be potentially treated sub-par because of my being trans.

I don't like this timeline, but I'm going to still fight for my future.

#Trans #Healthcare #LQTS #long_qt_syndrome

To the two older women who complained loudly that I pre-boarded my #alaska flight because I didn’t “look disabled”

I have #LQTS, a (in my case) genetically-inherited heart condition that means I’m at increased risk of getting a sudden cardiac arrest.

I felt compelled to go back and show the gate agent my medibracket because of your loud intolerance. I’ve been awake since 3am and I’m entering into my *danger zone*

I pre-board because I carry an #AED with me when I travel away from home. It’s once gone off at 40,000 feet because it became damaged by security scanning at the airport and made horrid noises. I warn the crew now to save worry on both sides.

I’ve never had to use my AED. Many of my family have implanted devices, but I don’t because I’ve never had a cardiac arrest. I have medication that keeps my heart rate within safe limits, but when I am tired I am more at risk of passing out..

I’m also more likely to be so fucking exhausted because my heart is medically rate-limited to levels that prevent me from getting a dangerous heart arrhythmia.

It sits as low as 39 bpm. Even when I’m working out hard it doesn’t go above 130.

This means I get more tired, more quickly. But honestly, that’s not the issue. You’re the issue.

My medical issues are my own. And second, fuck you.

To the two older women who complained loudly that I pre-boarded my #alaska flight because I didn’t “look disabled”

I have #LQTS, a (in my case) genetically-inherited heart condition that means I’m at increased risk of getting a sudden cardiac arrest.

I felt compelled to go back and show the gate agent my medibracket because of your loud intolerance. I’ve been awake since 3am and I’m entering into my *danger zone*

I pre-board because I carry an #AED with me when I travel away from home. It’s once gone off at 40,000 feet because it became damaged by security scanning at the airport and made horrid noises. I warn the crew now to save worry on both sides.

I’ve never had to use my AED. Many of my family have implanted devices, but I don’t because I’ve never had a cardiac arrest. I have medication that keeps my heart rate within safe limits, but when I am tired I am more at risk of passing out..

I’m also more likely to be so fucking exhausted because my heart is medically rate-limited to levels that prevent me from getting a dangerous heart arrhythmia.

It sits as low as 39 bpm. Even when I’m working out hard it doesn’t go above 130.

This means I get more tired, more quickly. But honestly, that’s not the issue. You’re the issue.

My medical issues are my own. And second, fuck you.

Woop! I just rode 17.5 miles on an electric bike for my daily workout instead of staying inside on #peloton. I agreed a route and kept my tracker on (because #LQTS).

But here’s the thing. The first 4 miles were admittedly downhill (although I did pedal to go faster. The next 9 were full effort from me, and I only used the electric motor to help climb up 1,300 foot over 2.5 miles from mile 13 to 15.5 The rest? all me.

It was particularly interesting to see how other riders behaved when they saw me. Some folks love all cycling. Some, thinking I was “cheating” gave me a scowl as they went past on the other direction.

Nope, sorry, most of that ride was me (and I also pedaled on the hill).

Got home with a full battery indicated.

Pet peeve: people thinking they’re medical experts on the subject of a rare medical condition you have.

Someone just told me to basically eat less and work out for 30 minutes a day.

1) I’m sorry, WTF? You heard “heart” and “cardiac arrest” and seemingly assumed my having #LQTS is somehow my fault and caused by poor diet and lack of exercise.

2) I literally have protein pairs missing in my DNA that has caused this. My two siblings have it. My mother has it (my dangerously underweight cancer survivor mother). And many of my relations on her side of the family have it.

3)I DO watch what I eat, and if you’re interested, here’s my last 30 days on #Peloton

4) Maintaining a healthy weight and staying active is a good thing. But I’m also on medication that purposely slows my heart so I am at less risk of developing a dangerous arrhythmia that could kill me. I’m not meant to work out alone or swim. Working out for me means making sure my heart doesn’t go above 130 bpm and means cooling down very carefully.

Pet peeve: people thinking they’re medical experts on the subject of a rare medical condition you have.

Someone just told me to basically eat less and work out for 30 minutes a day.

1) I’m sorry, WTF? You heard “heart” and “cardiac arrest” and seemingly assumed my having #LQTS is somehow my fault and caused by poor diet and lack of exercise.

2) I literally have protein pairs missing in my DNA that has caused this. My two siblings have it. My mother has it (my dangerously underweight cancer survivor mother). And many of my relations on her side of the family have it.

3)I DO watch what I eat, and if you’re interested, here’s my last 30 days on #Peloton

4) Maintaining a healthy weight and staying active is a good thing. But I’m also on medication that purposely slows my heart so I am at less risk of developing a dangerous arrhythmia that could kill me. I’m not meant to work out alone or swim. Working out for me means making sure my heart doesn’t go above 130 bpm and means cooling down very carefully.

The worst thing about having #LQTS is the period after working out. I can’t immediately have a shower so… I stay sweaty.

Ok. Because my heart meds (for #LQTS) pegs my heart at about 130 bpm max (and I’m not meant to go above 125 for long) I tend to focus on #peloton with lots of climb rides, combined with #EDM and #Dance #House rides. (Plus associated genres). I also do a LOT of seated rides with super high resistance prioritized.

For the last few days I’ve been bashing high resistance rides out the park but my legs are VERY not happy after the last few rides, so making today a bit of a core day. Will I regret it? Probably. Will it be fun? Maybe. Am I going there soon? Yeah.

Join me if you dare. I’ll be going there in about 20.

#health #fitness

Oh, and if you want to follow me? I’m @Aminorjourney there like I am here…

Kill me now. #Peloton #LQTS https://members.onepeloton.com/share/workouts/4231d4700c244e2fa73735ea705561b0?utm_source=ios_app&utm_medium=in_app&locale=en-US

It’s official: after five years, my Borg implant (my implanted Loop Recorder) is going low power.

Because I’ve been diagnosed with #LongQT I don’t need another one, and they’ve said I can keep this one in me with no worry.

Unless I suffer a cardiac arrest or need pacing, hopefully this is the last implanted device. Given that neither my mum nor my late sister had their implanted devices until later in life, I’m not going to say never…

The good thing? The meds, while they have some nasty side effects, keep me alive* :) no shocking required!

*Not so long ago, a diagnosis of #lqts meant you got an implanted defibrillator as a routine matter. Then cardiologists realized most people don’t ever use them, so they ONLY give you one now if you have a cardiac arrest caused by the condition… I know.. It’s weird. It’s why I carry an #AED when traveling, and why I can’t work out alone… or swim.

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.

@stavvers as someone who both loves coffee* and has #longqtsyndrome #lqts, I am already getting heart palpitations reading this. In fact, I’m pretty sure it would kill me. We once had someone ask for an 8-shot coffee.**

*my cardiologist is aware and while he’d rather I don’t have lots of caffeine we have an agreement about one coffee a day, made at home.

**yes, I once too worked at a Starbucks while at college, 20 years ago. It was in the square mile of London.

@DrLizNW I don’t do power zones because my heart is rate locked #lqts and I’m not sure how it would work as a consequence. Really should try it, but I find high resistance safer than high heart. Do tell me if I’ve misunderstood PZ though!