pacemaker

Exhausted trying to get a diagnosis of hEDS.

But now I'm under pressure because my two sons show symptoms. One is Autistic, one is pending assessment. And me? After seeing all the paperwork I realise I'm an undiagnosed autistic adult at 46.

This is on top of, my sister's Chiari Malformation, my late Father's Ankylosing Spondylitis, my Fibromyalgia (supposedly), Hypermobility etc.

Having a hell of a week. As I got full records from the doctor to check over for insurance, and I was diagnosed with CFS & Hypermobility Syndrome in 2000 - the doctor NEVER divulged it to me.

#AnkylosingSpondylitis #Pacemaker #Fibromyalgia #MastCellActivationDisorder #ChiariMalformation #CeliacDisease

I went to the dr they (SS) sent me to...
He asked can I do this, can I do that...a lot of it I could do, but it hurt to do it...
So I told him that.
I said look...I can do some of this but doing most any of these actions/activities I just have to think about how much pain I'll be able to stand later.
A lot of things I can do at the time but pay for it later...sometimes for 2-3 days afterward.
Don’t be embarrassed.
It was hard for me to admit all the troubles I have because I use to go nonstop.
I raised 2 kids...working 12 hrs shifts 6-7 days a week....driving 2 hours a day...then ballgame , practices, etc plus housework and family obligations.
It was really hard for me to admit going from that to where I am now having to have help out of the bed a few days a week and walking with a cane a couple days a week....and being in constant (chronic) pain.
Just be honest. #RheumatoidArthritis #Pacemaker #braintumors #FibromyalgiaDiagnosis #HumanRace

Due to issues with my current palliative provider began the process of looking for another. New agency, whom I like so far, has suggested I'd be better served on hospice as they could provide almost everything at home and bring some continuity of care, something i currently struggle with a lot. Would love to hear of others experience. Especially with difference with palliative and hospice. TIA for sharing! #Hospice #Dysautonomia #GastrointestinalDiscomfort #Gastroparesis #MotilityDisorder #FeedingTube #ivfluids #Pacemaker #PureAutonomicFailure #FailureToThrive #ChronicIllness #chronic pain

Having an invisible disability has me weary/nervous but wanted to as the community if they had anywhere specific they suggest or have had success. Or if there are any pointers of dating with chronic illness/disability? #Dating #Relationships #Love #Lonliness #adultchdwarriors #CongenitalHeartDefectDisease #ChronicIllness #Pacemaker

Having a second SA node ablation and getting a pacemaker, what are your must haves when you come home? What makes recovery easier? All advice welcomed!!! #Recovery #Surgery #Postop #InappropriateSinusTachycardia #Pacemaker #NeurocardiogenicSyncope #ChronicIllness #Dysautonomia

I’ve been wanting a tattoo for awhile now and ai just brought it up to my Mom, and she said I really shouldn’t because I have a implanted device and I can get a infection in my heart. After doing some research I found that it is recommended to take the antibiotics you take when you go too the dentist but she thinks it wont be good enough. Any thoughts? Or do you have tattoos and a pacemaker or implant? #Pacemaker #heart #HeartDefect #CongenitalHeartDefectDisease #Doctors

Today I had my second run of case meeting with my hematologist, immunologist, obgyn & psychiatrist. This was a follow-up meeting that held to discuss about my “current” condition which seems like it has no end of story.
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You know what? I was cried at that meeting. When my doctors offered me with their treatment option plan, I just couldn’t let myself to accept those option. After all this time, I was a very patience patient who patiently follow through all the treatments. I always say yes to each and every treatment they offer me. But only for now, I’ve reached my threshold. This is my limit and I couldn’t accept anything beyond my limits. No bargain.
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I feel somewhat my doctors kind of a hyperexcited into my case. I know I am “unique”. And I can’t blame if my case make them on fire. But being an “unique” patient is one thing, and being a critical patient is another thing. I tell myself that start from now on, I will show my attitude. If I feel that I’m not pleased with the treatment option they offer to me, then I will say no. Explicitly. I deserve to choose what kind of treatment I am willing to do, without sacrifing myself.
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Don’t get me wrong... I’m not angry with my doctors. I trust them with all of my heart. I don’t mean to be difficult. I just want being bolder with my decision. And I’m not giving up. I only choose another pathway. I also still deserve all the credit in the world for my strength, positivity, determination, and resilience in battling my illness. Because I’m warrior.
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“The strongest people are not those who show strength in front of us, but those who win the battles without we know nothing about”
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Notes : we’ll have another case meeting next month, until they feel I stable enough without their intensive monitoring.
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#journalife #quotesoftheday #InvisibleIllness #ChronicIllness #MentalIllness #Spoonie #AutoimmuneDisease #HeartDisease #Pacemaker #autoimmunewarrior #depressionfighter #pacemakerhost