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I'm new here!

Hi, my name is TPain87. I'm here because
I have been dealing with nonstop everyday migraines for the last 11 years. I am tired of going through this. Multiple doctors I've been through who I've switched to diff ones because I wasn't getting help when I asked them to please do certain tests. They continously put me on different meds. I take sumatriptan when it's BAD and I also take propranolol for my high blood pressure and to help with the migraines as well as monthly aimovig injections. I hate nobody around me will help! I've been to the er so many times over the years even once with a fever of 104 and they thought it was meningitis but they never tested me. Sent me home on an antibiotic to see if it'd help. It did for about a month. Over this 11 year period, I have gotten worse. They're more severe, I start to see things that aren't there, I have lost 40 pounds in 3 mo ths bc I don't want to eat or drink. I also have crohns disease and stage 3 kidney disease so not sure if it has anything to do with those? I am irritable, my personality has changed significantly with one second I'm happy and with a switch I am pissed off. I have excessive sleepiness, eyes were rece tly checked bc I'm having issues with light and driving is somewhat of an issue now. I have been put on a cpap machine bc of my sleeping patterns or nights I don't sleep. I'm confused and can't remember things how I use to. I'm struggling really bad. I'm 35 years old and have been dealing with this since I was 24. I am always feeling ill and always go to bed to wake up with fevers. Something IS WRONG and no neurologists seem to help. I have gone through physical therapy and it didn't help as well as chiropractor apps 2 times a week and still didn't help so .y insurance seen there was no improvement so they stopped paying for it. I can not work right now bc of it. My last job I was sent home a lot! If ANYONE knows anything, please help! I am struggling just to manage them every day just to live! 😔 If anyone might know what it could possibly be? or who is going through the same thing, I'd like to know! I feel alone. 😩

#MightyTogether #Anxiety #Depression #Migraine #Crohn 'sDisease

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New

I am new. I have a seizure risk since May 2014 from cranitomy. I have never had a seizure. I am on 1 anti epileptic medication. I also follow PTSD forums here. I had bacterial meningitis of my brain from chronic sinusitis and access left temporal lobe. I almost died. I was incubated in a medically induced coma septic multi organ failure. I had to relearn everything.
#Epilepsy

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I am new

I have ptsd. I had a craniotomy May 2014 for bacterial meningitis of my brain. Access in left temporal lobe removed. Was incubated on a vent multi organ failure. Today health is pretty good. Now the political situation in the US has increased my trauma

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I wish people would take my weakened immune system seriously…

All my life, I’ve caught bugs, colds and flus very very easily. But in the last ten years or so, it’s been much worse. Because of this, I have every vaccination available to me. The flu one, the pneumonia one, the meningitis one, the hepatitis ones, and five COVID vaccines. I avoid sick people like they literally have the plague.

But then I get my sister and nephew that come over, and the gremlin will crawl all over me. Which I don’t mind. But then just as she leaves she tells me that he’d been throwing up ALL NIGHT.

I run and wash my hands again (I do this repeatedly when he’s here cus my nephew likes to slobber). But, right on schedule… 3am this morning I wake up and had to sprint into the bathroom and even then, I didn’t make it to the toilet to be sick. I projectile-vomited all over the sink. I then spent nearly an hour curled up on the bathroom floor, shivering and being sick. My stomach muscles are so sore. My head hurts.

She KNOWS I’m immuno-compromised. Yet she repeatedly pulls this crap when she feels lonely and wants to spend time with someone.

I’m just really fricking frustrated and sore. 😞

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #NAFLD #LiverDisease #Diabetes #InterstitialCystitis #Migraines #ImmuneSystem #immunosuppressed #StomachBug #stomachflu

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The real Helen Keller and Annie Sullivan #DeafBlind

The real Helen Keller and Annie Sullivan by Helene Ryles

Helen Keller and I are both Deafblind, deprived of sign language, been misunderstood and had a ton of bullshit said about us, we both engaged in politics and we are both females which just about sums it up as far as our similarities go.

Myths about Helen Keller:
1. Helen Keller knew no language before Ann Sullivan: Helen Keller spoke at age 6 months. She has a perfect description of her illness so therefore it's highly unlikely that it took place as early as is claimed. She must have been at least three. Afterwards she learned various signs from her family's black servants. Due to racial issues they wouldn't have been allowed to punish Helen in the manner that Annie Sullivan did.

2. She describes her illness in her autobiography which would not have been possible if she was 19 months. She was at least

3. Helen was totally deafblind from the start

That's very unlikely. Other deafblind who had meningitis don't lose their sight and hearing all at once. Robert Smithas and Laura Bridgeman didn't.  Laura started with a small vest age of sight which she lost. Robert had some hearing which he then lost.

3. Ann Sullivan just had to give Helen Keller a good hiding and that's all it took.

Sure Annie Sullivan felt the need to enforce discipline to improve Helen's behaviour. But that's certainly NOT how she got through.

What actually happened was that the months of hard work that Annie put in finally paid off so Helen's ability to communicate improved so much that she no longer needed to express herself in violent outbreaks. From what I have read 'the miracle worker'  was a load of ableist and racist crap. The black servants were only there for comic relief when they maintained Helen's language. (Without them Annie would not have managed to accomplish what she did. I read about that and the fact the Kellers were racist in a site that was taken down.)

4. Annie Sullivan was an abled saint who worked miracles.
Annie Sullivan was herself partially sighted and eventually blind.  She also had various mental health issues. In fact if she lived in modern day Canada there may not have been so much of a 'miracle worker' as she was suicidal at times. Most of her mental health issues probably stemmed from PTSD from her stay in the workhouse. It's true to say she was a really hard worker and achieved a lot with Helen Keller. After refusing to take another student for most of her life there was a mention that she wanted to take in a deafblind baby right at the end of her life when she was fully blind with TB. Unfortunately Helen and possibly others put a stop to it. Which is a shame as she achieved so much with Helen Keller she just needs help which is what Samuel Howe had plenty of bringing up Laura Bridgeman.
(To get a better idea of Annie Sullivan read "Beyond the miracle worker" and "Miss Spitfire" ).

5. Helen Keller was taught via a strict oral only approach
No it was more of a full tool box approach. Since she started off with signs before Annie got there. There's no evidence to show Annie Sullivan stopped her from signing. She just didn't use proper sign language herself so taught Helen Keller finger spelling and then tadoma but unlike tadoma of a future era the deafblind manual was used as well.

Despite having a reputation of being something of a spitfire Annie Sullivan had her reason for not wanting to offend Bell but she declined to speak in favour of oralism and chose a school with a soft oralist approach (more like the modern signed Assisted systems or cued speech then the strict no signing at all systems in use at the Clarke oral school that Bell recommended but Annie Sullivan turned down).

6.Helen Keller wasn't political
She was into socialism. As often happens when we get too political we have to face other people displeasure. Our activities are swept under the rug and people aren't so happy which is what happened when Helen Keller became a socialist. A relative even talked about wanting to bend Helen Keller over his knee and that was when she was an adult.

7. Helen Keller supported your modern day cause
I doubt it. I have read a claim that she was for abortion. It's very unlikely since the feminist of Helen Keller's day didn't. Neither was she for disabilities or black issues aside from the odd comment which she got into serious bother with her family over.

8. Helen Keller was too wise to make mistakes
No she wasn't. She supported Alexandra Graham Bell and eugenics. You simply cannot promote eugenics and be for the disabled. It just isn't possible because eugenics is against the disabled.
She was in very dodgy company when it came to Alexandra Graham Bell who was both against the deaf breeding and using sign language and was responsible for Milan which was a very dark patch in history that robbed the Deaf  of their rightful language

9. There wasn't any romance in Helen's life.
She nearly got married to peter Fagan and became Mrs Helen Fagan but her family put a stop to it.  This is quite tragic since there wasn't any good reason to stop the union. After all she had a right to a normal life and it was ableism rather than her deafblind which got in her way.

10. There was only one Helen Keller
No, other deafblind people with acquired deafblindness were also successful. The others just don't get so much of a mention.

Laura Bridgeman was one of the first well known Deafblind people. She was exploited by
Samuel Howe. Howe didn't teach Laura Bridgeman. He hired others to do so.

While Howe claimed to be against slavery and an abolitionist he refused to admit black blind children at the blind school he ran. He was one major poser. Everyone thinks he is the one to originate deaf blind education when he was basically just the middle man. Some other guy decided to set the school up and employed Howe to run it. He had it in mind simply to experiment on Laura and use her as a publicity stunt having people view her like an exhibit. When the quintuplets were treated like that in Canada they had a major problem with it. Many of us disabled people, quite rightly, have a major problem with being seen as inspirational every time we do anything.

Howe started it spewing out complete nonsense about Laura being some sort of saint when she was only human and an unhappy and frustrated human at that. She got lonely, had an eating disorder and as soon as she overgrow her usefulness to Howe he didn't even properly address her support needs. Didn't provide her with the 'nice lady' she had been promised. Like Helen Keller she was also discouraged from marriage which many deaf blind people now do. (Of course not all disabled will find love but more should be done to alert us to what is possible with online and other dating agencies for both regular and single sexed relationships) while Helen enjoyed one full time helper who wasn't answerable to Howe Laura's teachers were and he was deliberately unkind about Laura last teacher when he decided Laura education had finished. The biggest injustice of all though (perpetrated by him and Graham Bell who was another Eugenic git) was to use their influence to put an end to sign language in Deaf Education. It is still debated today when the whole issue is a no brainier. Of course the deaf need sign language starting at babyhood or when a significant hearing loss is detected. Which ever happens first.

Recommend reading:
Books:
The radical lives of Helen Keller www.amazon.co.uk/Radical-Lives-Keller-History-Disability/dp/0814758142
Beyond the miracle worker www.amazon.co.uk/gp/product/B007Y39IYU/ref=dbs_a_def_awm_bibl_vppi_i1
Miss spitfire www.amazon.co.uk/Miss-Spitfire-Reaching-Helen-Keller/dp/1416925422
Websites: (about Helen Keller)

Three Big Ableist Myths About the Life of Helen Keller

Why Helen Keller Believed In Eradicating People With Disabilities

Why Helen Keller Believed In Eradicating People With Disabilities

How could a woman made deaf and blind from an illness in early childhood possibly advocate for the killing of those born with the same disabilities?
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The Incandescent Light Bulb Ban Harms Many

I have photophobia and over 10 years dealing with it, I have found incandescent bulbs are the only light I can tolerate for long periods. This year, the US president, Joe Biden has pushed forward on a ban of all incandescent light bulbs in an effort to support reductions in carbon emissions. I am terrified of this because it means I will never be comfortable in my own home anymore. I cannot tolerate the greener options available (fluorescent and LED) and being around these lights cause me significant pain and mental distress to the point where I become non-functional.

Does anyone know where I can start to get the needs of people with photophobia and other visual sensitivities heard on this issue? I was thinking about contacting an optometry group, a news station, The American Foundation for the Blind, The ADA, writing a letter to local state reps, even the president.

There isn't really a group specifically for photophobia and light sensitivity and our needs often go overlooked because eye problems that require brighter lighting are more common.

Also I don't have all the illnesses I hashtagged, I just wanted to bring other people with conditions that can cause light sensitivity into the conversation.

#Photophobia #EhlersDanlosSyndrome #Autism #Migraine #ChronicMigraineSyndrome #HemiplegicMigraine #ChronicVestibularMigraine #Dysautonomia #AutonomicDysfunction #Meningitis #BrainInjury

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I’m new here!

hi im here too try and make sence of the health issues I have I had bladder womb removed due to severe intisital cystitis and oab I have no children i was 28 ,ive since lost half if my bowel too no blood supply, and persumed slow transit , I have a parastomic hernia behind my transverese colostomy ,im reliant on 2 pickolax twice a day if not my bowel doesn't want to work im now awaiting further surgery too create a iliostomy, I have issues with pelvic floor , intussuption and ive had a rectal prolapse fixed but has since come back , ive had 30 surgerys but im scared that the iliostomy won't work , ive never had answers too why this is going on ,I also have widespread chronic pain fybermygia, ostiarthiritus in neck top of back and right knee , last few weeks ive started sweating really bad I just generally feel unwell , is it all linked, im 39 years old and ive had tons of issues but its always been put down too meningitis as a baby , I also suffer from recurring overian cysts as overys were left in due too age , ive had ectopic pregnancy, appendix, laoaroscopies 3 laparotomys I have a urostomy and a transverse colostomy at present

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I'm new here!

Hi, my name is MistressPlaid. I'm here because I'm struggling with adult-diagnosted ADHD and anxiety disorder, and am having a hard time getting timely and useful care from my psychiatrist, and am struggling with adulting on almost every level.

My ADHD symptoms have been getting progressively unmanageable the older I get, and tonight's late-night tunnel-vision research was centered on trying to find out if my childhood spinal meningitis (and resulting 2 weeks in a coma at age 2, right-side brain damage and inner-ear hearing loss, and more) would help explain my ADHD, and see if I can find a path to manage it.

I'm a former sex educator and sex toy expert (though that one might be something that never stops being a super power) and have used my ability to be in the flow to be present with people and help them know they are *normal for them* and are worth loving. I'd love to flex those neglected helpful muscles here, too, if the opportunity reveals itself.

#MightyTogether #ADHD #Anxiety #SexEducation

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