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Cochlear implants in APS Patients

Hi guys, it’s been a long time since I had posted anything. After many years losing my hearing from the left side (I was born deaf from the right side) , earlier this week the ent doctor said I am a candidate for cochlear implant. My head is spinning. I am happy for this possibility, but anxious that it will be so weird to hear and understand everything . Then, I am also wondering if anyone with aps have ever had this experience. What was the outcome? #Anxiety #AntiphospholipidSyndrome #Deafness #CochlearImplants


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Hi, my name is Anjpanj. I'm here because
I have been living with benign brain tumours for the last 26 years & was diagnosed with the rare genetic condition known as neurofibromatosis type 2, nine years ago. I’m the only 1 in my family of 5 to have this condition. I’m reaching out to others who have this condition for help & support at dealing with a hidden disability ( mine is at the moment apart from being partially bald from my treatment).I have left sided partial deafness from an Acoustic schwannoma . I live alone in South West London. I had to give up my profession of a complementary therapist which I loved. I now make jewellery, walk & look after dogs, garden, See family & enjoy tai chi & chi gong which helps with my balance. I look forward to hearing from you…. Xxx#MightyTogether #NeurofibromatosisType2

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We are in need of a new co-leader for MHC to encourage, empower, & support our members. I make a APPEAL to current members - PLEASE read below!

We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We are growning fast and just passed 2,200 members. This is really exciting to me, however to be honest, I have been very frustrated that there is less activity recently and as our membership grows steadily the number of comments & replies has actually diminished. Our old co-leader Chris is no longer with the group and we need to have others step up and make up for her commitment to regularly respond to posts and comments. This means a collective effort from everyone in the group! I have had numerous layers of serious physical & mental health challenges recently and not been as active as I would like in order to step back and focus on self-care. This is a time having another co-leader to pick up the slack is essential!

My last post about hobbies was actually first posted 16 months ago (when we had at least 1,000 less members) and it got over 200 ❤️ & 👍and 100 comments then! It got only ONE this time. And Laura made a great post about disability after that and it got only two responses as well. When new members open up and post to introduce themselves and then get very little response that is even worse. I fear that new members will see this and not be active moving forward. This is OUR group everybody and it functions best when members support other members. We all have our varied health histories and with them the knowledge and wisdom we’ve garnered along the way! PLEASE let’s share these with each other. Without this empathy and understanding this group is falling short of what I first envisioned when I started the group and what it’s capable of.

For a co-leader I am looking for someone to welcome new members, comment or respond to posts and other comments & replies, and make new posts to the group. It is important for the group to have distinctly different voices to support people because people might relate more to either 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. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like, will comment on your posts to get the responses going to best support your efforts, and I can help finding memes or images.

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.

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 your 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!

In service,

#Depression #Anxiety #MentalHealth #ChronicPain #ChronicIllness #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #BipolarIIDisorder #Bipolar1Disorder
#ObsessiveCompulsiveDisorder #ADHD #Schizophrenia #AspergersSyndrome #Autism #Dementia #Concussion #Addiction #AddictionRecovery #Cancers #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #Suicide #ChronicFatigueSyndrome #DistractMe #HIVAIDS #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorder #Headache #Stroke #Cancer #BorderlinePersonalityDisorder #Fibromyalgia #Disability #thankful #grateful #CocaineDependence #drugaddiction #Alcoholism #PTSD #EmotionalHealth #physicalhealth #PainAcceptance #Acceptance #relief #Selflove #Selfcare #MentalHealthHero #TheMighty #RareDisease #MightyTogether #RareDisease

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TW: Eating Disorder, disordered eating. CW: Disordered eating and weight loss. Anyone losing weight and has a history of disordered...?

Does anyone else on a weight loss journey with a history of disordered eating, find the medical/psychological terms and tips used by the medical profession to just be fancier/medical jargon-filled terms for what you did when you were ill in the throes of disordered eating? 🤔

'Like make sure to drink a ridiculous amount of water. Or try to make sure your movement output matches the calories you're intaking'.

It really just dawned on me how fatphobic most of our global society is🥲

You're praised for engaging in those restrictive measures when you're overweight. As if 'finally you've seen the light' when working out multiple times a day when in a bigger body.

I do want to lose weight, but it feels like every system and institution is almost goading me to fully engage in disordered eating. And to hell with the consequences as long as you're in a smaller body😮‍💨

#ChronicIllness #MentalHealth #Depression #Anxiety #Agoraphobia #Fibromyalgia #ChronicPain #ChronicFatigue #BackPain #IrritableBowelSyndromeIBS #BingeEatingDisorder #DisorderedEating #EatingDisorder #EatingDisorders #AuditoryProcessingDisorder #Deafness #BulimiaNervosa #Anorexia #Obesity #Insomnia #Asthma

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I had a meeting with my psychiatrist today for #medmanagement . She wants me off #Xanax . I’m being cut from 4mg-3mg/day. She’s also insisting I go into the #Hospital for #detox . I do NOT want to do the hospital. I WOULD like to be off xanax.

What have you experienced with Xanax withdrawal? Would a hospital really help me?
#Fibro #Fibromyalgia #Type2Diabetes #Diabetes #Diabetes #Deafness

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Three Tools That Have Helped Me Win My Battle Against Pervasive Anxiety

Anxiety has long plagued me. Ten years ago I was in a life-threatening and life-altering accident. My accident left me with a brain injury, chronic pain, and profound deafness in my left ear. The accident also left me with a lot of anxietyanxiety about my identity, anxiety about my prognoses, and anxiety around driving a vehicle.

While time has helped heal some of the anxiety of navigating a new world post-trauma and concern over long-term prognosis, I have had to be more intentional about working through the anxiety I have felt every single time I have gotten behind the wheel of a car since my accident. Others likely haven’t had my exact trauma, nor have my exact response, but everyone who experiences anxiety can use some new ideas and modalities to help minimize it.

Anxiety can be pervasive and debilitating, but there is no reason someone should continue to live with it. There are all kinds of tools and resources out there to help. While medication and therapy are probably the best known, there are many other modalities that could be beneficial in your journey. Here are the three things that have helped me the most:

Exercise – This one is huge for me. The more I move my body in challenging ways, the more I understand that my body is strong and powerful. Knowing that I can let go of some of the worries that come along with being a trauma survivor. The endorphins pumping through my system during and after vigorous exercise help too! Don’t worry if walking is more your speed – I walk a lot too. Moving my body is a great distraction from worry. It strengthens both my body and my mind.
Mindfulness – I have always liked the idea of meditation and mindfulness, but have struggled with the practice. I’m not someone who sits still very often so voluntarily clearing my mind and sitting seemed really hard. Again, the idea of being at peace is amazing, but actually being peaceful – significantly harder to accomplish.

I started small with this one. I would meditate for five minutes at a time. Sometimes I didn’t make it through those five minutes, but after consistently practicing I was able to manage. From there I have only increased my meditation practice time and as I have done so, I have reduced my anxiety.

Mindfulness in approaching every activity also helps reduce anxiety. If I acknowledge how I feel about a certain event/person/activity, then I can explore what I need to do moving forward – whether that be saying no or challenging my thought distortions.

The more I meditate or focus on staying in the present moment, the less overall anxiety I feel about any situation.
Acupuncture – This one has made the most significant difference in reducing my anxiety. I realize that I am privileged to be able to access acupuncture. Not every acupuncturist takes insurance and practitioners can be hard to find. If you have access though, I recommend trying it. Just the relaxing environment allows some of the anxiety to go away. Really speaking with and allowing your acupuncturist to know you, your challenges, and your story will allow your practitioner to create a treatment plan that is best suited to you. If something doesn’t work, ask about trying something else. In my experience, an acupuncturist wants to do her job well and the only way to truly be able to do that is if they are aware of what’s going on with their patients. Acupuncture feels like part therapy/part peaceful nap/part deep release.

These modalities and tools may help you, and they may not. But, they are avenues to try. I encourage you to keep trying to find what works for you. Don’t live with anxiety if you don’t have to. Everyone deserves a life of peace.

Carrie Rickert is an author, speaker, and coach. To learn more about Carrie’s story, order a copy of her new book, Trauma is a Catalyst: Rickert, Carrie: 9798887315225: Amazon...on Amazon today.

Trauma is a Catalyst: Rickert, Carrie: 9798887315225: Books

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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.

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