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My life should be a Bestseller Story

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

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Anyone with experience with hospice?

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

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Loosing it tonite ##Selfharm #Suicide

I'm in another manic state tonite, my gf turned on me out of no where, I am there for her as best asI can after her dad passed away in her arms several weeks back, but snapping at me the way she did sent me spiraling out of control. I'm at the point where I want to tear my skin off and escape from this body ! One problem I face is I'm a body piercing artist, so I can sit for hours shoving very large gauge needles thru my body, I know where it hurts the worst, and I get that sick "thrill" when I finally pull them out, to watch my blood pour from my body. I'm writing this in hopes it will keep me from doing it, cause you all would know bout it & I would feel bad & ashamed. . .. .. . . I tell her over & over & over again to join this "app" and get help for her endless grieving, but I imagine she must take that step herself. There's only so much I can do, I don't have all the answers in the damned universe !
#Selfharm #BPD #CPTSD #Cancer #MANICINSOMNIA #AnxietyDisorder #PanicDisorder #Migraines #TBI #SpinalStenosis #Polyneuropathy #Pacemaker /DEFIBRILLATOR#COVID -19

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Wanting to try #Dating #Relationships again where’s the best place to go?

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

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What are your must haves after surgery?

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

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Chest Pains. Get checked out! #CongenitalHeartDefectDisease

I wasn’t going too post anything but last night I thought I should as a little but important PSA.
Yesterday after I got home from being out with Ren and I was about too go back too work. I sat up and got serious chest pains around the heart, numbness in my left hand and my left side was cold, extremely cold. This pain truly did knock me back down on my ass, and left me terrified. I made a stupid mistake and didn’t call 911 right away everything just happened so quickly. My Mother was nearly home and so we raced into the ER, come too find out because the pain stopped as we were going in, there was not much they could do. This is known they ran an ECG and did all that but at the time everything turned out being fine. Today I still feel freaked out and extremely tired, but relived. So please if you have any symptoms of a heart attack or any cardiac episodes go get your self checked out. They take it very seriously in there and they will take care of you. There is no shame. #Pacemaker #CHD #HeartCondition #Hospital #Stress #PTSD

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Pace maker friends I have a question about tattoos

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

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Sorry, I’ve Reach My Threshold!

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

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I’m Not a Superhuman

“Unless they're superhuman, nobody's going to look perfect all the time” - Kaia Gerber.
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So you said I am the stronger one. You said I am brave and have courage. You said I am your inspiration. You said I am the true definition of a tough woman. But this time, I'm also strong and brave enough to say this to you; Yes, I am sick. And I feel tired of being sick and tired.
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Please don't get me wrong. I always give my best to stay strong. I always try my best to fight this illness. And I never gave up. But after all, I am only a human. I am still a human who has limits and can feel tired. I am still a human who can feel pain and soreness. I am not a superhuman.
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Do you think that because I’ve been suffering from this illness for years, then I'm getting used to it? No... that will never the case. I may have a higher pain tolerance than you. I might not show my pain to you. But it's totally different from being numb. It still feels painful and intense. And sometimes it's unbearable.
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Now, I'm standing here to tell you this; No, I’m not as strong as you think. I also have fear of facing my illness. There is a lot of blood and tears to fight this illness. There is a lot of rejection and disappointment in any acceptance. There are many ups and downs until finally I can admit that I am sick, and I may have to give up on my old life.
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Although, I always tell myself that life is about managing this illness and getting up again. Life is also about making new adjustments and rebuilding my life again. And life is about never giving up your life. Because we all want to live. We want this as much as we can, and that’s why we fight for our lives until the end.
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Just sometimes, I need to remind myself that I also have a permission to feel tired. To have a break. To stop fighting this illness. To accept my limitation. To admit that I am sick. And to show others that I have tried, but this time I lost.
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I relapse.
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#journalife #quotesoftheday #InvisibleIllness #ChronicIllness #MentalIllness #Spoonie #AutoimmuneDisease #HeartDisease #Pacemaker #autoimmunewarrior #depressionfighter #pacemakerhost