Long QT Syndrome

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Long QT Syndrome
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How do you bring yourself to dill out an end of life packet?

I got mine in the mail yesterday just in case I turn critical before I can get to an out of state hospital with a specialist…. I got COVID in May and developed QT Long Syndrome so all psych meds stopped, except Elavil. June I had a stroke that left me weak on one side, not able to write or speak properly, or even more around well. Few weeks later I had a Dystonia episode that almost killed me. Elavil was stopped. My Gastroparesis was continually getting worse since COVID and because my heart meds are not option at this point. I now I have a PEG tube but still pleasure eat some. In two weeks I will be getting a PEG-J to completely by pass my stomach. I am in the hospital more than I am home so it feels like it. All I do is sleep. Life is hard and a long life just isn’t the cards anymore. My end of life packet came in the mail yesterday. Five Wishes. This is my PARENTS know my final wishes and planning a memorial service. It seems so backwards. I am only 33…. How did I reach this point? What did I do or not do? How in the world can I fix this when my state won’t even help me?! No idea how long I have to wait for Houston but my body is giving up and I am afraid I won’t make it to that appt. But I cannot bring myself to fill out this packet. Feels like giving up but my parents need to know these things….. #Gastroparesis #FeedingTube #CriticalCare #scared #how #why #doesitgetbetter #endoflife #longcovid #Stroke #LongQTsyndrome #HeartHealth #MajorDepression #Schizophrenia #Schizophrenic #Anxiety #PTSD #MedicalPtsd



Well the job in Antarctica didn't pan out.
Medical kept wanting more and more
information on my gastroparesis, and then
I found out that the COVID vaccine was
mandatory, so I had to withdraw.

Now I've found out that my full time
position is in jeopardy because of the
mandate as well. I have until December 8th
to be vaccinated or I'll be terminated with
cause. I'm so stressed out and worried
about losing my job. I do NOT want this
vaccine. Not right now. I don't feel the
research has been done enough to know
how this will affect people five, ten years
down the road. It was rolled out way too
fast and approved way too fast. I have too
many health issues; I don't need more. Also,
I've had COVID. I'm fine. I have the antibodies. I shouldn't be forced out o get
vaccinated. And I sure as hell shouldn't lose
my job over it.

Anyway, I recently had genetic testing
done. Found out I'm a carrier for Alport
syndrome and that I'm at a higher risk of
developing Long QT syndrome. I also
received a clinical diagnosis for hEDS.

I started a second job (PT weekends, so I'm
working seven days a week) with the
Medical Examiner's Office about two
months ago, and it's awesome. I very much
enjoy it. Luckily this vaccine mandate isn't
affecting that job, as they have less than
100 employees. So even though I'm
screwed with my FT job, I'll still (hopefully)
have my PT job. #Update #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #Gastroparesis #Anxiety #CheckInWithMe

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#Death #LongQTsyndrome

Having a bad day. My oldest daughter died 5 years old yesterday. She was only 31 and had a 4 year old son. We had no warning about the heart beat problem. I have been crying some and I have a migraine. I miss her so much. I wish she could see her son who lives with us. He’s doing so well. My heart is hurting.


NJ Tube Fears

Hey guys :)

I have moderate-to-severe intestinal dysmotility, and mild Gastroparesis. After months of weight loss and pain and discomfort, my team has decided the time has come for a feeding tube to be placed. I'll also be starting a motility med, but that may make my heart condition (Long QT Syndrome) worse so I'll be in the CICU for a bit as well while we watch that. I'm also apparently an "ideal candidate" for refeeding syndrome, so watching that as well. The idea is that the med combined with pre-digested food will be something my body can handle, and that I'll get off the tube within a few months and go back to my liquid diet sans feeding tube.

Frankly, I'm scared. Terrified. I've never had a feeding tube before, never had a central line or anything like that, and I have no idea what to expect. I know it'll suck during placement and the first few days, but according to the internet the discomfort will pass relatively quickly. I'm much more concerned with the public's perceptions. As a 15-year-old ambulatory wheelchair user, I'm used to stares, but I know they'll only get worse when I have a tube clearly pasted on my face. I'm also worried about feeding in public, flushing, delivering meds, everything that's going to be a new part of my life. I have an invisible illness, and I'd like it to remain that way. This changes that drastically.

I'm at the point that I need to be admitted now. However, my hospital is currently overrun and having a Flu outbreak, so I got deferred for a few days. I go in on December 30th for placement. It's better than Christmas inpatient anyways.

I guess I'm posting here in the hopes that someone else will get it. I'm scared, and I don't know what to expect. If anyone has any tips/advice they'd be much appreciated.

#EhlersDanlosSyndrome  #PosturalOrthostaticTachycardiaSyndrome  #dysmotility  #ChronicIllness  #ChronicIllnessEDS  #Fear  #njtube   #tubie   #InvisibleDisability   #InvisibleIllness   #LongQTsyndrome


Imposter Syndrome?

Does anyone else feel major imposter syndrome when they're actually given the care they've been fighting for?

I'm dismissed and trivialized so often by doctors that when one actually takes me seriously and helps me get a procedure or medication I need, I am immediately terrified that I'm not "sick" enough to need it, that I somehow over-exaggerated my suffering, or maybe I am actually somehow faking and I'm taking resources from people who need them...

Logically, I know I'm being honest. I know I need this. But I have to fight so hard to be taken seriously that it makes the stakes feel incredibly high when it comes to accepting the care I've won. It's a lot of pressure.

Does anyone else feel like that sometimes? How do you deal with it, and just let yourself be?

#ChronicIllness #LongQTsyndrome #Fibromyalgia #ChronicFatigue #Fainting #ChronicPain

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A new friend asked about my meds, this is what I said... #ChronicIllness #LongQTsyndrome #Asthma

It’s just part of the picture, there’s more that goes into keeping me going each day. It’s never pretty, glamorous, fun, or exciting. It’s just necessary, like water...
Really expensive, often shame filled, isolating, side effect laden, but life saving water. Mine comes in pills, inhalers, mists and nebulizers...others may look different. But don’t forget, for many out there, it’s as needed as water.

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Chronic Illness. #ChronicIllness #Migraine #InflammatoryBowelDiseaseIBD # #JointHypermobilitySyndrome #HypothyroidismUnderactiveThyroidDisease LongQTsyndrome

“Everything hurts and I’m dying.”

Having a chronic illness isn’t easy. It isn’t glamours. It isn’t fun. It isn’t something to want.

I have multiple chronic illnesses.

I have irritable bowel disease (IBD), specifically, ulcerative colitis. A condition which effects your intestines, causing inflammation and ulcers etc to form, which can cause symptoms such as weight loss, abdominal pain, and fatigue.

I have Hyper-mobility spectrum disorder (HSD), which is a multi systemic disorder, personally, it mostly effects my joints, my joints are all lose, and dislocate or subluxate daily. It causes an awful lot of pain.

I have chronic migraines, which is classified as a neurological disorder, where I experience over 15 days of migraines a month, it’s not just a headache.

I have long QT syndrome, a rare, inherited, cardiac condition, where the electrical wave known as the QT interval, is longer than normal, this condition can cause sudden death, personally I experience chest pain, passing out and general dizziness.

I take over 20 tablets a day.

I am unable to work.

I am not just lazy.

I am fighting everyday. A war against my own body. A fight that you can’t see from the outside. I look healthy. I look fine. I’m not. I fight everyday. It’s exhausting. It’s so hard, it’s so much work.

It’s a job, an everyday job, that I don’t get paid for.

Those of us with chronic illness, we won’t get better. It’s a . We will be unwell for life. There might be periods of remission, and times of flare ups, but we will always be unwell.

We don’t want sympathy.
We just want some understanding.


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Where I #FindStrength - #MightyPoets

Despite my Zopiclone, I can’t sleep. I wrote this poem after seeing the monthly poetry inspo post... I’ve never shared poetry but I’m exhausted and figure why not? So here it goes:

In the mirror when I smile
With make up tactically hiding the fatigue
In the outfit that I style
With my walking stick and ankle brace,
I find strength.

In my soft flannel pajamas
To not hurt all my bruises
And my soft and silky eye mask
Because the soothing darkness never loses,
I find strength.

In the message that I read
Of friends planning a pizza day
Keeps my anxiety at heed
And I can still come as myself,
I find strength.

My dog who’ll give me cuddles
Exactly where my body’s sore
She’ll hug me while I’m napping
And let me rest some more,
I find strength.

In my mom who holds me when I walk
And my dad who carries me up the stairs
In my brother who makes me tea while we talk
And in my friends who slow their pace for me,
I find strength.

In the things I have so far achieved
That even I would never have believed
In the things my fellow warriors fight to do
Despite conditions and battles never relieved,
I find strength.

In the things that I hope for
Like getting back on my horse
In the things that we pray for
Like a day that’s not worse,
I find strength.

For we’ve now come so far
We’ve learnt to keep going
To live our best lives like we never imagined
And hang onto life in the wind that keeps blowing,
I find strength.

#Fibromyalgia #ChronicIllness #ChronicMigraines #ChronicPain #ChronicFatigueSyndrome #Scoliosis #LongQTsyndrome #IrritableBowelSyndromeIBS #Bronchiectasis #SupraventricularTachycardia #GeneralizedAnxietyDisorder

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Triple Zebra- #LongQTsyndrome #HEDS #SolarUrticaria

Happy #RareDiseaseDay to all of my fellow zebras (Rare Disease patients). This year, I’m raising awareness for the 3 rare diseases that affect me every day. I live with a rare, genetic heart condition called Long QT Syndrome that places me at high risk of sudden cardiac arrest. Because of this, I have a defibrillator/pacemaker combination device implanted to shock my heart back into the proper rhythm when this occurs. Only less than 1% of those with the already rare diagnosis of Long QT Syndrome will have Long QT Type 5 like my family. Our specific gene mutation has also never been seen before. I also have Solar Urticaria, a rare severe allergy to ultraviolet light and sunlight. I’m allergic to UVA, UVB, and some types of visible light such as black light. I still react through windows, in the shade, and through clouds. It severely limits my life, essentially forcing me to “live in the dark”. There are very limited treatment options. Finally, I live with Hypermobile Ehlers Danlos Syndrome, a genetic connective tissue disorder making my joints come out of place and be very unstable. It also causes me to be in severe chronic pain 24/7 in my joints. I fall easily. I cannot walk far and use a cane, knee braces, ankle braces, wrist braces, and a jaw splint to try to support my joints. If I have to walk far, I require a wheelchair or mobility scooter. I am #RareAndMighty
#EhlersDanlosSyndrome #ChronicPain #CongenitalHeartCondition #HeartCondition #HeartDefect #Arrhythmia #ChronicIllness #RareDisease