I have been at the social security office twice in the past two weeks. When there I use a large computer touch screen display (must be fun for the blind!) to enter my information. It always asks me if I have one of a few disabilities. I always select Deaf or Hard of Hearing.
I’m wondering if this is not, as it says, for them to serve me better, but for statistical purposes. Why? Because no one there gets a notice that I am HoH. The person I’m working with has a lovely, soft, lightly accented voice that is at the very far edge of my ability to hear. She’s a wonderful person and she works hard. I appreciate her dedication to getting things done right the first time. Thank heavens for hard-working government employees – and if you want to bash a government employee just don’t start because I’ll delete the post. I spent years working my butt off for the state of Idaho and Alaska.
Anyway, this lovely and efficient lady talks to her computer monitors, or at least I think she is. I don’t know if she is talking to herself or to me. I’ve finally decided that if she isn’t facing me she isn’t talking to me – and if she is, when I don’t answer she WILL turn around and face me.
I will say this, she starts talking to me and writes instructions at the same time – which is great, because I can barely hear her when she’s facing me. I repeat that I am HoH. She apologizes and 5 minutes later we do it all over again.
At least I can hear the guy at the front desk as he has a good voice.
Why? Why bother asking? Does anyone know the answer? You’d think that with Social Security working with so many retirees they’d be clued in on hearing loss. I guess not. It is not like I’m asking for a terp, but it would be nice if they’d talk just a bit louder, face me when they want to talk to me and make sure I understand by going over the information again.
I swear to Buddha I am going to get a T-shirt printed on the front: DEAF and on the back STILL DEAF! Or maybe it should be I CAN’T HEAR YOU! and on the back I STILL CAN’T HEAR YOU!
Only one more trip – to drop off a document and (thank the gods) I am done. I hope. Please tell me I’m done!
The problem with being deaf or seriously hard of hearing (HoH) is that unless we are part of a larger Deaf community or involved with organizations for the hard of hearing we tend to be isolated souls. It is not that we want to be, it is simply a fact that oral communication is generally limited for us. However, now and then we have a breakthrough.
There are blogs for the D/deaf and HoH. Blogs dealing with Meniere’s and blogs about CIs. There are groups on FaceBook (FB) that cater to the D/deaf and HoH in a variety of capacities. I’m in 3 such groups – one professional, one focusing on ASL and another that is more conversational.
Not long ago one of my blogging pals, Wendy of Picnic with Ants mentioned she no longer needed her relatively new hearing aids (HAs) because she now has bilateral CIs. Recently on FB another individual mentioned a need for replacment HAs that could not be met because of no longer being a part of the work force.
A contact with Wendy and a contact with the FB gal (who happens to have a blog on ASL on a different blogging site) and a connection was made – much to the delight of both parties. And I was more excited than both of them together. :)
I’ve previously returned older, serviceable digital HAs to my audio service provider who sends them on to be refurbished and donated to children who cannot afford them. That’s great. But what about adults who are not working and cannot afford them?
In general, insurance does not pay for HAs. And there’s the rub, because it is now known that untreated hearing loss leads to a loss of brain density which is related to dementia. Dementia is a huge problem in our elderly population today and is a drain on financial resources. If $6k in HAs every few years could prevent tens of thousands of dollars or hundreds of thousands of dollars in custodial care costs it appears to me to be the height of stupidity on the part of the medical insurance industry not to market hearing insurance aggressively. Keeping people functional would be an enormous cost savings. What is wrong with the bean counters that they are missing this? I’m not sure, but I’ve a niece in the health insurance business so I shall ask her about her thoughts on this.
Back to networking: It appears the Lions Club accepts donated hearing aids to benefit men, women, and children who cannot afford them. It also appears that the Starkey Hearing Aid Company accepts donations, but I’m not sure how they are handed out. Hearing Loss of America has a financial assistance program. In Massachusetts the Massachusetts Commission for the Deaf and Hard of Hearing helps individuals get hearing aids, although funds are limited. Not every state has a commission for the Deaf and Hard of Hearing, but it might be wise to contact state government and see if your state has assistance. Of course, for individuals in the workforce your state’s Vocational Rehabilitation office can assist in paying for hearing aids so long as they are related to employment.
It is important that deafies or HoH folk network so that HAs that are functional but live in dresser drawers (unless they are the backup HAs one should have) find their way to people who need them. Behind the Ear (BTE) is the only kind that can be easily recycled (a new ear mold will do it) although In the Ear (ITE) can be donated and the parts used to build another HA. My hearing loss is at such a level that an ITE won’t work for me anymore – I’m BTE from here on out now.
It is estimated that only 10% of people worldwide get the support they need to deal with hearing loss. We need to start engaging in some serious networking and rabble rousing to have HAs covered by all insurance.
I can only describe it as having “mumps of the ear.” What made it so bad is that I was medicating for post-surgical knee pain and it also covered the pain of an fulminating external ear infection. By the time I realized I was in trouble I couldn’t get my HA in and my face was starting to puff up. Such fun! And I was with the grandkids so had to wait until I was “off duty” (so to speak). On the good side, the ER wasn’t busy at that time of night.
At least this time I could do my own voicing. I couldn’t hear worth beans, though, and I felt a little bit like I was acting Autistic doing my rocking in the chair with my hand over my ear. I guess we all get that way when the pain gets bad enough.
The doctor couldn’t get the scope in my ear far enough to see if I had an inner ear infection; partly because the ear canal sorta swelled shut, and partly because pulling the top of the earlobe up made me sorta try to duplicate the look of the poor soul pictured in “the scream.”
When the doctor saw me rocking from the sharp stabbing pain (I tried to ignore the burning, throbbing, and itching) I got a couple of Tylenol on board and the nurse did her best to get ear drop into the ear canal. More imitations of “the scream” from me. Then came a prescription for stronger ear drops to fill when the pharmacies opened the next day, and another prescription for oral antibiotics too. Gonna kill this junk since this was my second late-night visit for an ear infection since December. I think they’d rather we not keep meeting like this. :)
Since the ear drops I left with didn’t have much of an effect (I still had ear mumps the following morning) I filled the scripts the next day. I still have a tiny bit of swelling, but it no longer looks like I have ear mumps and today I was able to jam the newly cleaned HA in for awhile. Still some swelling in the canal and around the ear, but there is a definite improvement. I am sure the grandkids would disagree on that since I’m still doing a lot of deaf nodding when I realize that the only way I am going to understand is if they text me.
I’ve been told that if I get a CI I can avoid these infections since what causes them is my allergy to the silicone and plastics that fit in the ear canal. Unfortunately, I’m apparently not a candidate for a CI since I’m not going to offer up my one “good” ear and the “bad” ear is totaled.
I can’t remember having one ear infection before I started wearing a HA. Now it is nothing but trouble. Sometimes I wonder if it is worth it. If I lived in a Deaf community I doubt I’d bother with a HA except for rare occasions. Since I’m starting to lose sirens (unless they’re REALLY close) I’m not sure they even help much with emergencies on the road. I just rubberneck all the time.
More critical information from DeafInPrison.com
Originally posted on deafinprison:
Deep beneath Colorado’s Cheyenne Mountain – recently renamed Mt. BitcoDavid – lies the DeafInPrison.com complex. Here, thousands of worker bees – wearing black suits, dark sunglasses and coiled thingies in their ears – drive around in blacked-out Chevy Suburbans, and labor tirelessly to bring you the best in Internet content.
Recently they received a communique from the Silent Grapevine, requesting a supporter contribution. Here is BitcoDavid’s response to that request:
The Struggle of the Deaf in Prison
All three elements of interaction with the Justice system, directly affect the Deaf in far different ways than they do the Hearing.
1) Arrest: The goal of police during an arrest is to take physical custody of a suspect. Their only concern is discovering hidden weapons, and preventing escape. There is little opportunity for communication during this phase, and an ability of the suspect…
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Please spread the word!
Originally posted on deafinprison:
One of my favorite Orwell characters – and not related to my avocation – is Boxer, the horse from Animal Farm. Boxer was a truly selfless individual. Even as his own breath was failing him, he would utter what was to him a mantra, “I must work harder.” Regardless of what Boxer was intended to represent to the story, one can’t help but to respect his work ethic.
I feel like Boxer, sometimes – I’m sure we all do. One area where Boxer’s unstoppable attitude would serve me, is in helping to free Felix Garcia. We had a great week, and got almost 100 new signatures on Felix’s petition
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Important information from Chelle
Originally posted on SayWhatClub:
by Chelle George
In February I went on a advocating frenzy, tired of feeling left out and feeling for anyone else who felt left out. I requested CART for a writers workshop I want to attend in May, requested an ALD at the downtown library for a reading from local authors and left comments on news sites in regards to hearing loss. There’s a Paulo Coelho quote: “Life has many ways of testing a person’s will, either by having nothing happen at all or by having everything happen all at once.” Right after I posted about my advocating adventures, life erupted and picked up speed. I had a hard time keeping track of what all I had to do, where I had to be and when. This is why I haven’t posted much in the last month. I think things are slowing down again and today I have time…
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Yeah, I’ve been lagging in posting. Why? Probably because there have been few new challenges that have come my way regarding the hearing thing. Who wants to listen to a rehash of the old ones? Not to mention that I’ve been down with “the plague” – a severe cold exacerbating the asthma that gave me severe laryngitis and has now devolved into a long, drawn out bronchitis. All viral of course, so no treatment except to outlive it. (sniffle, hack, cough, sniffle)
I did end up at the ER with this version of the creeping crud. The consensus was I probably needed a chest x-ray to make sure I wasn’t getting pneumonia. So off I went. However, the laryngitis was so bad I could’t even whisper. This left me the option of writing or signing. I usually voice for myself. This time I thought, what the heck, ask for a terp so s/he can voice for me.
The hospital was WONDERFUL about it. Absolutely no problems there. Johnny on the spot. There were only three little problems.
1. The terp was contacted over a video system and the monitor was not exactly large. I could have used a telescope to get a better view.
2. The ER was very busy and I was not in a private area where one could hear oneself think – probably because someone with more severe problems was in there. Makes sense. Except for one other problem.
3. The interpreter could not hear the nurse. Even if the nurse was screaming into the designated sound area the terp was bewildered. It was an absolute avalanche of sound and everything hit the terp just like it did me.
However, I was able to sign to the terp and have her voice for me. The problem was that she couldn’t sign the nurse’s questions back to me because she couldn’t understand them. Eh? What was that you said? Huh?
That particular foray into remote terping ended up with the nurse and myself writing notes back and forth.
This little hospital really doesn’t have a lot of private rooms where they can put people with special needs. It is the size of a large postage stamp. But the staff is kind and caring so I wasn’t upset. We just worked it through.
Thankfully, I didn’t have pneumonia and went home with instructions to use Afrin Nasal Spray (sorry for the ad) for NO MORE than 3 days less my nose get addicted to it (A nose can get addicted? Who knew?) and to get 12 hour Sudafed (sorry for the second ad) and take it as long as I had symptoms. I still have symptoms so I’m still taking Sudafed. I ponder taking another run at the nose spray.
What this demonstrates is that while a terp who was there with me could have dealt with the noise level, the terp who is working remotely may be as unable as the deaf or HoH person to understand what is going on in a very noisy environment.
I now have a friend working for a company providing this sort of terping so I’m going to mine information from her and get back to all y’all. :)
And oops, I have to run now. So without further ado, here’s a new post.
CART, CI, Meniere’s Syndrome, Medical Care – living with hearing loss – following the life and times of Wendy! Fabulous blog!
Originally posted on Picnic with Ants:
On the 18th I had an appointment with my neurologist, she is a headache pain specialist, to get the Botox shots for my migraines. I get these injections every 3 months. They do help. No, they don’t take away all my migraines, but I don’t have to take near as much medication, and I’ve noticed the migraines I do have are very often much less severe than they used to be. Also, No, they don’t work on wrinkles.
My doctor is a little lady, so very cute and sweet. She reminds me of the good fey (for those of you not into fantasy books, according to Wikipedia, “Fey is an umbrella term referring to fairies, pixies and sprites in the broadest sense“…this is a very simple…
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Please pay attention to this case. You could help save an innocent man from unjust punishment.
Originally posted on deafinprison:
As most of you know, DeafInPrison.com has been working tirelessly, on the release of Felix Garcia, the innocent Deaf man, imprisoned for 30 years thus far, in Florida. We have written countless pieces on his situation, been in constant contact with Pat Bliss, the paralegal who has been working on this case for over a decade, now, and we created the longest lived and most active petition thus far, seeking his pardon.
Well, Pat Bliss and Reggie Garcia – the pro bonoattorney who’s handling the clemency hearing – have enlisted the aid of Sachs Media Group in an effort to inform both the public, and the requisite Florida legislators, about this urgent case.
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Snappy title. Not a murder mystery. Consider it a medical mystery. One you may find important in your life.
Meet “Katie.” She looks fine when you meet her. Underneath that big smile and wise-cracking exterior beats a heart with too many nerve centers so it can beat a syncopated rhythm or start going lickety-split in, well, a heartbeat. And then there’s the problem with the valves. She needs a valve job sometime in the near future. Because of these problems she has other problems – like excruciating headaches. But there is no label saying, “I’m fragile” anywhere to be seen.
When you shake her hand you might think she’s being ladylike, but the reality is that her weak grip is a manifestation of the peripheral neuropathy that’s slowly eating away at her arms, legs, hands, and feet. She can exercise morning, noon and night, but will never gain muscle mass. She will however, be sore and exhausted. If you watch her hands you may see her fingers tremble. She’s not nervous, that’s the neuropathy.
She watches her kids play, but rarely joins them. She can’t run. She can break an ankle by tripping over a tree root or stepping down off a curb the wrong way. In fact, she broke an ankle the first time when she was in grade school. The last time it was so bad she had three surgeries to fix it. It is still not fixed. But you probably don’t notice it because she walks without complaint, although slowly. She always wears pretty flip-flops – because her feet don’t fit in shoes because of the deformation that still needs to be surgically fixed. But you are unlikely to be staring at her feet while you ae paying attention to her laugh and smile.
Katie is sick – a lot. She’ll be out and around with a massive migraine to take her kids to sports and you won’t know. But we do. That’s the problem. To the family, Katie being sick is normal. To Katie being sick is normal. Life revolves around heart palpitations, headaches, surgeries. walkers, crutches, visits to the doctor, blood draws, CT scans, MRIs, X-rays, and visits to the hospital.
If someone else had seen Katie turning bright red all over they might have thought it was something other than having the heating pad on too high. There were signs – a hard time breathing. (Was it the asthma? Get an inhaler. Is that better?) Hot and sweaty and red – but it went away – and then came back. (Cold? Flu? Actually, neither.) Take a good look, because a tidal wave of misery can be coming.
Finally, Katie, who is sick of doctors and hospitals, went to the hospital. Thank God she did. There a miracle happened. An ER doctor didn’t brush her off as a chronically ill complainer. He had a hunch why she was sick. He had her transferred to a state of the art medical center where they realized that Katie was close to death.
No one has answers for how Katie got both bacteria and fungus in her blood. Was it from one of her surgeries? There have been several recently. Was it from the cellulitis she got from a flu shot? The cellulitus from the foot surgery? From the Port? (the port had to be removed). After a CT scan found the tumor in her upper spine and she started losing body function there was a surgery to remove it, but it couldn’t be removed. So they took out spinal bone instead to stop spinal cord compression.
They might never have gotten that far if Katie died from the effects of the infections in her blood. The list of complications from that is long and scary. The surgical risks were scary too. Life for Katie is a roller coaster high point to a screaming low after another.That’s why people who are used to seeing someone with chronic illness can miss things. And those missed things can be fatal.
The lesson I learned was that if a symptom in anyone else would concern me – the next stop is the hospital where they can draw blood, do MRIs on the spot, CT scans, and x-rays. Over the years it became too easy to see all problems as a chronic illness problem rather than a life-endangering acute crisis issue. See your primary care for routine medical care.
A lot of my readers have chronic illness. It is easy to feel like that super-low you’ve been facing for a few days is just another crappy day. Then again, it might be something like Katie is facing. Want to take the chance?
I told Katie that the next time I see something that would scare me in anyone else I am taking her to the hospital – period.
I’m HoH – almost deaf – but I can see. I knew she was sick and I knew the symptoms were out of the norm.
I want you to look at yourself in the mirror – especially if you have chronic illness – and ask yourself if this is different from what is usually going on. Then look at your loved ones with health problems and resolve that if they were anyone else and you had the power to get them medical care – that you do whatever is necessary to get them that care.
Katie’s saga continues. We’re fortunate it does, although it is a painful continuation.
Take care of yourselves. Don’t brush off pain in the chest and difficulty breathing even if you think it is the “same-old, same-old” whatever it is that gives you grief. If you start having strange symptoms like turning red all over and dripping sweat for no reason at all – get medical care, for goodness sake!
Be well. Stay well.