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Feeling MY Way Through this Journey #CrohnsDisease #DiabetesType2 #MentalHealth #Allergies #ChildLoss #SpinalMuscularAtrophy #ADHD

I've been going through multiple situations over the past 30 days. #1 My eldest daughter got arrested at a public facility, #2 the year anniversary of my middle daughter's death quickly approaches, #3 Mother's Day is when my mother transitioned, #4 fighting for my life with these UNPROFESSIONAL MEDICAL CARE TEAMS, #5 I have 3 grandboys from my deceased daughter that are in foster care and they refuse family communications. There's so much more, but this is THE TOP 5 STRESSES.

THIS EMOTIONAL ROLLERCOASTER HAVE MANY OBSTACLES!!!
#Fighting4MyLife

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Have you ever felt like you are a mistake and should not reproduce?

This post really might be silly, and I know that many many people are going through much worse things.
I just needed to put it out of my chest. Since tomorrow I have been wondering that maybe nature does not want me to reproduce.
When I recall on all the things I have been through with health and being only 28 years old I feel like a failure.
I have dealt/been dealing with:
- serious kidney inflammation when I was a kid
- bladder reflux
- allergies literally on everything (food, animals, dust, plants...)
- asthma
- ekzema
- immunity problems
- anemy
- problems with sudden loss of vision in one eye
- incontinence
- gall bladder stones
- acid reflux
- OCD, anxiety
- chronic stress which often leads me to do different kinds of muscle twitching to release the tension
- and looks like maybe I also have $p€*m allergy
- I also have MTHFR and PAI mutation which means I badly metabolise follate and during pregnancy I would need to take anticoagulant injections

Really sorry for this post
I just really feel like a total failure of nature and having children and a happy family is my dream come true
#MentalHealth #Anxiety #Allergies

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Pacemaker offers more surprisers ten years lager

Part 1 of 2 I know a lot more about pacemakers than I did in 2013 when I had the first one implanted. In 2022 I had a battery switched out and believed I was a professional pacemaker user. A few months ago, however, I discovered there is a lot more to this little battery pacing my heart.
For clarification, my heart is structurally sound. Dysautonomia- an umbrella term used to describe the malfunction of the autonomic nervous system- slowed the heartrate. By 2013 I was operating mostly in the low to mid 40s and felt crummy. Medication did not help, and I was diagnosed with chronotropic incompetence (basically the heart’s inability to sustain a normal heartrate). A pacemaker cannot cure dysautonomia, but it took away the bradycardia symptoms which had left me exhausted and winded.
In the last 10 years, the cardiologist and I have surmised why I have bradycardia and dysautonomia. At the age of 20, I had mononucleosis (viral infection number one). My heart started beating more slowly. I had a few medical tests run and doctors said the slow heartrate was due to allergies. I ran when I felt the heart too slow and then went to sleep, typically feeling better the next day.
In 2010, I had a string of sinus infections culminating with the flu in 2010 (viral infection number two and more). The month of December was horrendous and the day after Christmas I experienced my first of many experiences with dehydration. Again, the dysautonomia specialist believes those viral hits are what essentially “damaged” the autonomic nervous system, resulting in a myriad of symptoms and consequences.
Fast forward to August 2023. That was the month I learned of a complication of pacemakers. I had felt unwell for a couple days, and even had a horrible bike ride in which lying down did not help me recover. There was intense pain from my shoulder to my hand- I literally could not hold the bike handle and had to dangle arm (not a heart attack).
I received a phone call from a pacemaker representative that adjusts the settings. He wanted to see me as something was wrong with the pacemaker. In 10 years, I never received a call regarding the battery; I wasn’t sure anyone reviewed it.
Here is the biggest surprise _ pacemaker leads can “break.” After nearly 10 years, the coating of my one lead is coming undone. What does this mean? First, the pacemaker switched from one setting to another, which does not feel good. I passed out once and came close a second time before I knew what was occurring. The pacer can sense orthostatic intolerance I deal with (drop of blood pressure upon standing). It will then shoot my heart rate up, so I feel ok. Unfortunately, with the lead not working properly and actually pacing in both chambers instead of just the top, it doesn’t decipher these changes in my body.
To fix the situation, I am having laser lead extraction surgery at the Cleveland Clinic. I could have had it in Buffalo, but it is a complicated surgery, and the expertise is in Cleveland. It took more than two months to secure an appointment with the surgeon; it’s four months total from the time the pacer stopped working accurately until the lead is replaced. I have not biked since early August, have had to be extra careful with increased symptoms and have dealt with additional fatigue and nausea.
This is my third pacemaker surgery; the most complicated one. The surgical team uses a laser to burn and then slowly pull out the lead. If it is deemed too difficult to extricate the lead without damaging anything, the lead will stay, and I will get a new one that works. Ideally, however, it is hoped the lead can be removed and replaced.
A few months ago,  I went for a bike ride at the Buffalo waterfront believing it was any other summer morning ride. Little did I know the crazy medical detour I began. This is reminiscent to the bike rides in the summer of 2010 in which I had to hop off my bike as I felt like I was going to pass out. These bike rides were the clue that something was wrong with my body, other than an easy fix.
I am annoyed that this has happened; I never even knew of such a complication _ which occurs in one to four percent of the population. I guess I am once again the “lucky one.”
I have learned several things in the last four months including:
1. I need to bike. But walking and using an indoor bike is ok. (Putting weight on my left arm causes “noise” on the pacemaker, which is a problem).
2. My husband and family are of great support.
3. I don’t have to take the first medical opinion I receive. I have a great local cardiologist who can manage my care but for such an intricate surgery I want to be in a top-notched facility that does thousands of these surgeries.
4. Many hospitals do not perform lead extraction surgery because it is rare, the equipment is costly, and a doctor must have specialized training.
5. I am fortunate to be able to travel to Cleveland

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Ash-Burger's Syndrome (the story of my life)

I'm clumsy. I've always been clumsy. People are terrified of telling me to take a break because I do. I break cups, glasses, plates - you name it. They nicknamed me Zorba the Greek, one place I worked because of this. Talking of jobs - with me they've always been few and far between. nothing lasts long. I either get bored and leave or get sacked.

"Now look what you've done!" or "What happened to that order I gave you, to send out to Mr Harvey on the eighth?" (Well he didn't specify which month, did he?).

To say I was socially inept, is mildly true too. If I had a drink in my hand, I'd either drop it or spill it on someone.

"You clumsy idiot!" (Well yes, I know that - can you be more specific or add something else of interest to that point?).

I was never a great talker and got on better with kids and animals, than I ever did with adults or the human race altogether.

"Stop grimacing at me you nutter!" And other plaudits like this, would come my way. Talk? How could I? I could barely get my body to work, let alone my brain. Occasionally I'd let slip a terrible pun, to break the ice, in social situations. Every time I tried to be clever, an uncoordinated load of stumbling rubbish would come out.

"What do you mean, I-I-I, ig ag ooh?"

Ruthless Mickey takers at work or down the pub, would plough right into me as soon as I opened my mouth, so I shut up again or I'd burst into hysterical laughter as I found the joke funnier than anyone else.

"For Christ's sake shut up! The joke's over!"

Then there were the times I couldn't understand what anybody else said. It was like that Far Side cartoon - What you say and what a dog hears:-

"Blah, blah Rover. Rover blah, blah."

It was like I was hearing a foreign language or none at all.

"Cat got your tongue? Well it bloody should have - you don't use it enough, to need it!" (Ha-ha - very funny I thought but couldn't stand the humiliation of trying to actually say it).

Hugh and Milly Asian? Now that's a couple I know well! Yes, my literal sense of humour categorised me as autistic, even if nothing else did. Then there was phonetic spelling.

"That's not how you spell it Wright - get a dictionary!" ( Wright, wrong again! School, who needs it? If they want to spell it that way, why can't they say it that way too? It's all so jumbled up and illogical!).

There's some legend that says having Asperger's makes you a mathematical genius - not me. On the way to school I obsessively count the telephone poles, yes but I couldn't add up to save my life or yours, when in the classroom. Oh yes, the stories of us being selfish and self centred are true. We live in our own little world and you can't enter, even with a valid passport. Our borders are closed Mr Schickelgruber and nobody can come through without our express permission, so turn your tanks round and go home.

We are a strange mix of contradictions - egotistical, blunt in our speech, when we do open our mouths. Bloody minded and stubborn, yet fearing confrontation because in a fight, we wouldn't know when to stop - at least that is what we believe. It takes a hell of a lot to get us going and just as much to put the brakes on: Quick to anger, slow to cool down and come back into Earth orbit, if we don't miss it altogether. Innocent, vulnerable, trusting and blundering. It is this openness and honesty that turns us into the brainy creature we so often are. While others play about in the classroom or outside it in the playground, developing their social skills through interaction, we shut up, sit still and, look and learn. We shut them out and let the light of understanding in. Ordinary people connect with the outside world, through talk and physical contact - not us. We are geeky, clumsy and inappropriate in our comments and movements but we connect internally with ideas. They can dance, play football, cake on make up or make cup cakes but not us. Books are our only friends - failing that our computer screens are. We'd rather text than talk, write and read rather than speak - even to each other. We want to know how the universe works and maybe even one day, we'll find out how we work but not today, oh no, not today...

We know we are not liked - even feared and despised by some people or why attack us? (You only bully what you're afraid of - what challenges you to be what you are not or at least makes you think about it as a subject). Limited intelligence, criminality and defensiveness go together - leading to ignorance and suppression, by those wanting to shut out the light. Perpetual motion and emotion, keeps them on the move but not us. We don't want to leave home or even go out. We just want to collect our train numbers or plonk about on our computers in peace. Failing that we want to vegetate in front of the goggle box. We are not active participants in life. We are just passive viewers, along for the ride (Don't ask us to drive -we're not up to it or up for it either). We understand sound and motion go together (as with music and dance) but we are detached because we are observers of life, not activists (We don't move with the times because we are lumps of rock - orderly and controlled, not relaxed). We see only chaos and confusion in the world - danger we are not ready to face. Go for a swim? No thanks! You could drown and then there's all the pollution in the sea and God knows what in the rivers and swimming pools! We don't enjoy our lives, we study them for that great examination in the sky, when we all kick the bucket (Did we do well?). Live our lives? Maybe next time. Spontaneity is for wimps - we love routine. Order and discipline, that's us.

We're not in our bodies but always outside, looking in. This explains our odd gait as we're not in contact with life or society's natural rhythms.

We feel continually under stress because we are. Our twitching, tics and odd mannerisms show this. I need to crack my joints continually because of this (neck, between the shoulders, lower back (especially this point), ankles, knee caps, wrists, fingers and toes - by the way did I mention we're obsessive list makers?). This is why you'll see me and others like me, suddenly tilt their heads to one side or move our hands and feet into strange positions, for no apparent reason - we need to relieve our spasticity (Perhaps this is where 'Jerk' comes from as an insult?). It could explain the difficulty swallowing, indigestion, sensory sensitivity and allergies as well. Maybe too, it explains the dietary fads of eating nothing but a particular food - like crisps, beans, bread or biscuits, for months, even years on end (I've heard that we're carb eaters, avoiding protein and choking on fats).

Is it any wonder that we're stressed? Our attention to detail driven characters, fear of making mistakes, rigid personalities (love of tight clothing), passion for order, discipline and routine - all contribute to the pressure we feel under and put ourselves under. If we weren't so visually orientated, we probably wouldn't be so language impaired, continually swallowing nervously in social situations. This passivity and receptivity is probably what allows us to be so logical but it also leads to the need for space and the temper tantrums that follow, should we not get it and find we cannot cope: The sensory influx that drives us insane - the obsessive compulsion to wash our hands and protect ourselves from every other potential danger , turns us into an explosive powder keg of emotions, which blows up like a volcano every so often.

They say it is a male thing - this turning down and in, in curiosity, then up and out with answers and insights. This mental pressure is the same as physical pressure as in sex and other expressions, I believe. The physics of it is male concentration versus female dispersal of attention and energy. This is why males are more volatile and suspicious because of it (wound up and easily triggered into

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neurodivergent backpack what to put in

I am going to Disney world in July for girls trip I know everyone’s neurodivergent back pack is different but can someone give me there neurodivergent back packs what they have for some ideas I could have in mine please. What kind of back packs they have, headphones, how many fidgets they brought and what kind, etc..
(I DONT sweat so I don’t know what to bring or wear or whatever for myself that could help me, I have sensory issues to loud noises like fireworks, I like to play with my hands sometimes I need help please) I have scoliosis so please don’t make this backpack heavy and needs drinks and snacks too, what we 4 need gf and df, no garlic and onions for my sister, no allergies, gf for my mom, no allergies for my sister gf, same thing with drinks also for my sister df gf ideas what we should bring with

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I’m new here!

Hi, my name is faithcarriesme01. I'm happy to be here; I'm hoping to find support and suggestions, from you all on how to live a better. I would Love to stay on this earth another 10 yrs, to help my Adult Boy's through any health challenges, I may have passed on to them. I have several Chronic / Accute Health Conditions, that when I, think back on over my 59 yrs it surprises me that I'm even still here, especially with the lack of medical care I've received the last 3 1/2 yrs, when I've needed it the most. To share a little more about my health challenges.. I've been diagnosed with #cfs/Me#mps#temporial ARTERITIS #cgd#tn#pot'S#mcs#pvcfd#oa #acd/HIV#tmj#sijd#mts# I've been diagnosed many other conditions that I'm learning are in the ED'S/Veds Catagory, still working on finding a provider to do a workup for Mast Cell, that seems after chatting with others my drug, food, inactive ingredient allergies & high histamine levels are very much in line with other Mast Cell patients. Hopefully what I've learned over the years, I can share with you all and it will help someone, that's my goal. :)

#MightyTogether #Fibromyalgia #PTSD

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#MentalHealth #Allergies #Depression

My Journey
MY STRUGGLE WAS REAL
October 2022
There's no question about it. Something was wrong 🤔.

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#MentalHealth #Allergies

Not knowing is always the hardest, but as you can see that something very serious was taking place inside of me.

My whole appearance 🤪 did a 360°.

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#MentalHealth #DiabetesType2 #Allergies #ChildLoss ##Fibromyalgia

My Journey
September 2022
MY STRUGGLE WAS REAL
My locs of 11 years started falling from my head and I was concerned 😟 but didn't think much of it because I was coloring my hair.

Didn't know that there were hidden monsters lurking in my body waiting to devour me.

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