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    Surviving is just part of the journey…making the most of the time it gives you and realizing there can be good times despite the struggles is a gift!

    It’s not all about survival, there is a lot of living to do along the way. Although at times I feel like I am just treating one ailment after another, all day every day (which is true right now) I’ve decided why take all the time and energy it takes to survive everything unless I don’t enjoy how the time given to me by surviving is ripe for good times too.

    Recently I have mostly been homebound except to go to health appointments… doctors, PT & OT, clinics, therapy etc. and then only with a walker and the benefit of handicapped parking spots. But I try to continue to celebrate the gifts I have in life, be thankful for the blessings I have that make life just a little more bearable and remind myself of what I’ve been through, how I’ve survived and what I’ve learned from these experiences. If I consider all this, then I must be a very wise man 😉 I may have dropped out of college but I have a Masters degree from the School of Hard Knocks … the diploma is not needed, I know I have accomplished it and need no reminder…I’m still alive after all!

    Tough times have given me the chance to tap into my inner strength and I’ve also grown along the way. I don’t have to wait to celebrate the good times when I am experiencing some right now despite what I’m going through!

    Thank you all for the love, support, thoughts and prayers, I certainly couldn’t have done this alone!

    #Depression #Anxiety #MentalHealth #ChronicPain #ChronicIllness #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder #Stigma #ObsessiveCompulsiveDisorder #RareDisease #AspergersSyndrome #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #ChronicFatigue #DistractMe #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #PTSD #EmotionalHealth #physicalhealth #PainAcceptance #Acceptance #relief #Happiness #Selflove #Selfcare #MightyMinute #MentalHealthHero
    #TheMighty #InsideTheMighty #MightyTogether #DistractMe

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    What is conversion disorder?

    Conversion disorder (also known as functional neurological system disorder) is a condition in which a person experiences physical and sensory problems, such as paralysis, numbness, blindness, deafness or seizures, with no underlying neurologic pathology. #psychognictremors #ADHD #Autism #BorderlinePersonalityDisorder

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    Then and now

    I am a 52 year old deafblind Asperger. Which is  old enough to be 'educated' (or rather dumped at) a special school. It wasn't my parents fault. They just acted in good faith to bad advice. They also removed me from 'special school' four years later when they realised how bad the standard of education was there.

    Fortunately these 'special schools' is a thing of the past. Most of the children who went there would be educated in mainstream nowadays. Which is a good thing for most disabled children.

    But not deaf or hard of hearing children, who are often still expected to make do without being taught sign language. Just as I was. Just because a certain Samuel Howe wrote a book stating that the deaf should NOT be taught together or with the use of sign language and certainly NOT be permitted to marry. He went so far compare the deaf to prisoners who would pick up bad habits if they were allowed to mingle.

    This is the man Alexander Graham Bell took his policy from. He is the reason deaf education still isn't very good. He believed speech set us above other life forms. He was wrong. Literacy is. Yet literacy is sadly lacking when a deaf child is orally taught to the exclusion of gaining good literacy skills.There is only so many hours in a day and when most of those hours are spent in speech therapy literacy skills are not given the attention they need and the dismal education standards of a lot of deaf children reflect this failure . Th literacy rate among the Deaf was actually better before Milan where the Deaf were stripped of their rights to communicate via sign language.

    As a baby I am told I spoke at the usual time before stopping altogether at the age of one until the age of 3. Only this was  more due to autism than deafness. I wasn't tested for deafness until I was about 4 and I was told that I had a 40 decibel hearing loss. I was enrolled at a mainstream primary school but it was considered I wasn't doing too well so I was transferred to 'special school'. The school report that decided the matter was kept and later used to diagnose me with Asperger syndrome at the age of 30. It's very unfortunate that the diagnosis of Asperger Syndrome is gone. Because Hans Asperger was born in the wrong time and place where failure to comply got you shipped to a concentration camp but he did do his best for his patients and he never joined the NAZI party. He was struggling to keep the NAZI at arms length. (Neurotribe by Steve Silberman has a chapter covering him).

    I consider Ivon Lovaas a much more shady character. He was also the guy who introduced ABA as well as conversion therapy for homosexual children. Whilst conversion therapy (that implied torture NOT discussing one's problems) is on the way out ABA is most regrettably in use. There is a school that still electrocute there autistic pupils

    Luckily I wasn't subjected to much of that. The first teacher I had at special school was awful. I was sent to the corner with the other 'naughty' children every single day for not eating my dinner, and other such  'crimes' . some of which I wasn't even aware of. Luckily I didn't have to put up with her for more than one year. The others simply left me alone. I was ignored but at least I wasn't being punished like I was that first year. I have heard horror stories about partially sighted children being locked in the dark and other such abuse. On the other hand I also heard bad things about mainstream and blind people who think their specialised education at schools for the blind were better.

    After a brief stay at a mainstream primary school and 3 years in a mainstream high school where the better teachers wrote on the blackboard for me. I had to leave when the bullying got too bad.

    The next school was a partial hearing unit who had an oral only approach. I did better socially because there were other deaf kids. They were mainly hard of hearing but we all could have me benefited from sign language. Having to struggle to decipher lip patterns and faulty sounds most of us could pick up. This is why I feel the Deaf and hard of hearing NEED sign language. Sign language is also beneficial for autistic children too. So learning baby signs from the start would have been best.

    I am afraid I cannot remember all that I was subjected to but that only happened later. (Read 'shouting at leaves' by someone who remembers all the details of her past since mine is a blur of bad dreams and VERY strong feelings against ABA.)

    For me it was just a question of being told by my parents: "we believe you are Autistic now stop behaving like one." And your brother Charlie's death was a good thing because he was disabled. Not the sort of thing you tell a disabled child to make them feel welcome!!!!

    I also had an aunt called Chantal who also had an under active thyroid, learning difficulties and mental health issues. Nobody ever specified what they were except she hit people, broke things and was in the habit of going about without any clothes on. When mother spoke about her it was in the same way she spoke about a dog my grandparents once kept who bit people. I was advised to keep away from both of them. I was never around to witness any of her tantrums since mother was quick to bundle me off to a great aunt whenever she had any.

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    Yo-yo dieting

    I am deafblind Asperger. I was born premature with with an under active thyroid and Asperger syndrome a minor hearing loss was detected age 4 started wearing hearing aids at age 11 and progressed to total deafness age 30. I was only relieved I could stop wearing hearing aids now because they hurt.

    I have been self harming epileptic and having mental health problems since teens. Sight problems since 17. I a m happy to be deaf blind Asperger but could do without the additional mental health issues but these things are not up to you in life I have had to learn that the hard way.

    I have been yo-yo dieting since my mid 20 when I slimmed down. I will slim then stop skimming. Get overweight and then start slimming again so I know the disadvantages of being over weight . I have tried bulimia too but for whatever reason I simply cannot do it. This is very frustrating but I guess a blessing in disguise since I have heard bulimia is very bad for you.

    Problem is since Covid I have taken to comfort eating, and I have a lot less energy which makes losing weight even harder than before and I am yet to have any success even though I am told I should lose weight or at least not donate my too small clothes to charity yet.

    5 reactions
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    We are in need of a new co-leader for our group. Please see info below. We need someone to encourage, empower, support & be there for other members!

    We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We have grown quite a bit and just passed 1,500 members. In the past co-leaders have been golden, really helpful for me when I got sick or burnt out and had to step away for a few days. I am looking for someone to welcome new members, comment or respond to most posts or other comments, make new posts to the group every once and a while, and preferably someone who has physical and emotional health challenges so they can best relate to and understand where other members are coming from when they post or comment.

    It is important for the group to have two distinctly different voices to support people because people might relate more to one of us. What is a really good situation is if we both respond to the same posts, welcome new members from different perspectives and provide voices for people that are accessible and relatable. There is a commitment needed that you monitor activities on the group regularly and can respond pretty quickly.

    Offering your own posts provides more content for the group…and when posts pose a question they keep things moving forward. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like it, comment on your posts to get the responses going to best support your efforts, help finding memes or images, and support you if we are dealing with someone struggling …. Like sounding suicidal or being manic…and I will check in to make sure you are happy and comfortable!

    I look at potential leaders' history of posts and/or comments that have helped and supported others in the past. Willingness to be honest and open about your own health challenges is crucial to best support people. A co-leader works together with me for some new posts and drafting new questions and is concerned about the well being of all members and can empathize with their paths.

    You will get access to the Community Leaders group and your name will have a “Group Leader” tab next to it up top on your comments and responses so I think people pay attention especially to your activity and wisdom shared from personal experience. Would you consider joining me on this journey? Let’s have a DM chat to discuss this! Thanks for considering taking on this role!

    #Depression #Anxiety #MentalHealth #ChronicPain #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder
    #Stigma #ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #ChronicFatigueSyndrome #DistractMe #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #Disability #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #alcoholic #PTSD #EmotionalHealth #physicalhealth PainAcceptance #Acceptance #relief #Selflove #MightyMinute #MentalHealthHero #TheMighty #RareDisease #MightyTogether


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    Stapes surgery: your thoughts/experience #Deafness #autoimmune #MyastheniaGravis #Surgery #ChronicIllness #sjogren ’ssyndrome #POTS

    I have very severe cochlear otosclerosis with severe to profound hearing loss in both ears and multiple autoimmune and chronic conditions. Since I am using hearing aids on both sides but getting little benefit from one of them due to the severity of the loss and difficulty with speech discrimination too, my doctor wants me to undergo a stapedectomy. I’m pretty nervous to undergo this surgery and would love some feedback about pros and cons and any alternatives I may be missing. Thanks!
    #Deafness #autoimmune #MyastheniaGravis #Surgery # chronic illness# sjogren’ssyndrome #POTS #Hearing loss

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    Hi, I'm new here. I have already shared some of my frustrations on here. Looking forward to meeting others.

    #MentalHealth #MenieresDisease #Deafness #Vertigo #Tinnitus #Anxiety #Depression #PTSD

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    C – Coloboma of the eye, central nervous system anomalies

    H – Heart defects

    A – Atresia of the choanae

    R – Retardation of growth and/or development

    G – Genital and/or urinary defects (hypogonadism, undescended testicles, besides hypospadias)

    E – Ear anomalies and/or deafness and abnormally bowl-shaped and concave ears, known as "lop ears".