Long QT Syndrome

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

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

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

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