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.
Originally posted on deafinprison:
What if there were a program that benefited the disabled community, cut down on prison recidivism, and rescued animals? Oh wait, there is. A number of states are now exploring programs where inmates can care for and train adopted service dogs.
In one example, C.H.A.M.P. Assistance Dogs Inc. has partnered with Missouri Department of Corrections and placed dogs at Women’s Eastern Reception, Diagnostic and Correctional Center (WERDCC), in Vandalia, Missouri. The dogs go from local shelters to an 8 to 10 week training program at the facility. There, these animals live with and accompany the women in their day to day activities while being trained in all aspects of life as a service dog. Staff members visit the prison once a week to evaluate the dogs. Successful inmates are rewarded with the opportunity to take on more dogs.
The Prison Pet Partnership of…
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I spent most of the day hanging around Mass General Hospital today while a family member had surgery. During these many hours I spent some quality time pondering the imponderable. Why do the Hard of Hearing have so much trouble with service providers, particularly medical personnel?
On the one hand, I can go to NVH and everyone I run into there knows how to relate to a hard of hearing person. But…they have an Interpreter for the Deaf on staff – and are proud of it! They do their best to offer assistance promptly and efficiently. MVH on the other hand seems to have no idea how to relate to someone with a hearing problem. I mean clueless – totally.
When an ENT and their office staff members are equally clueless I am both baffled at the lack of competence (lets call it what it is) and frustrated by the lack of response.
So what’s the difference between MVH where no one knows what to do and NVH – a tiny, isolated, HoH and Deaf friendly hospital? What gives? It can’t be corporate philosophy as they’re both owned by the same mega-chain.
I kept kicking the can down the street mentally and came back to the concept of AWARENESS. Good old being in the moment awareness. And how do you become aware – even in the Buddhist sense of learning to be in the moment? Training followed up with practice.
Not a handout no one reads, but pervasive institutional training. Someone at NVH took the time to make it a HoH and Deaf friendly facility. Training and practice. You can’t learn anything without training of some sort and some kind of practice in using the training.
It isn’t about hearing Not everyone can nor should get a CI. It is about communication. And to be able to communicate with anyone you have to be aware of communication styles. Without adequate training and practice – or some positive exposure to the HoH or Deaf – you have folks who are blissfully unaware that they are inadequately serving clientele.
It is why I’ve literally told more than one doctor: “You are not competent to serve this patient” when I’ve acted as a patient advocate. It is why I don’t hesitate to pull the plug on an incompetent provider who is unwilling to learn.
So, having had this “awakening,” I’m at the hospital making notes on my trusty iPhone.
Tonight I started a Google document presentation. It’s in rough draft and it’s out of order. It’s something I can put up on the web and make accessible to the world. I might reach out to some terp type folk I know. Gotta start somewhere.
Then I plan on creating a neat, tight little document in big type that can be printed and handed out to providers who take our hard-earned money and give bloodily little back in return regarding communication. Something with just a few easy points – because they aren’t going to read much – and nicely phrased to be informative and non-confrontational.
Not everyone is as
obnoxious confrontational aggressive assertive as I am, so a handout needs to be short and sweet.
Maybe my friend David of Deaf In Prison can tell me. Why on Earth does someone start talking to someone and then turn and walk away. What?! The mouth is on the front of the body, not the back. Is there some switch I don’t know about that moves a mouth from the front to between the shoulder blades?
Okay, I know I’m not the only patient at the surgeon’s office. I get that. Personnel who look familiar to me may not remember me since they are not a primary care office. But, really! What is it with hearies who will say something, before I am close enough to hear, before I’m sure it’s me they’re talking to, and then turn around and walk away and I know they’re still talking. The person could be singing the Torts Law song, “Chicken bone, chicken bone, choking on a chicken bone” from law school torts class, asking me how my New Year was, or telling me something important.
Exasperation ‘R Us
When I was close enough to guess I’d be heard I said, “I’m still deaf.” She turned and looked over her shoulder and I continued. “I was deaf the first time I met you. I have been deaf every time I’ve seen you since then, and I’m deaf today. You have to look at me when you talk to me.” I don’t know what she thought about what I said, but she did face me and did communicate appropriately with me. She’s really a very sweet young lady and I’m sure she just forgot, but I swear I want clothing designed that says – in large type “I’m still deaf.” Maybe flashing off an on – in red letters – with spangles.
I will give her this, she was as sweet and kind as could be just as she always is and I do like her, I’d just like her better if she could remember I am functionally deaf in noisy situations – like doctor’s offices. (sighing)
The doctor – he’s no problem, he’s got a good voice and is a good communicator.
At the desk for scheduling surgery I’m back to “I’m still deaf. You have to talk to me. I can’t hear you. Look at me when you talk to me. The piece of paper in front of you isn’t listening, I am.”
Meanwhile, my daughter who is across the room, near the door, is able to have a conversation with the woman regarding scheduling. I almost got up and suggested they make the arrangements without me. Not that my daughter tries to undermine me – she wants me to be fully engaged, it’s just that I can’t figure out how the hell these people do it.
Really, hearie friends. Do you routinely talk to someone through your back? How does that work for you? Is there a way I can get in on this phenomenon?
When my daughter brought me home to her place, I ended up sharing a room with my 7-year-old grandson. I’ve got the bottom bunk. Overhead are thick, firm, wooden slats. I don’t believe anyone realized how useful they would be. I’ve been able use them as therapy bars. First I could use my left hand/arm to help whilst my right arm/shoulder was a shattered disaster. Now I’m using them to help lever myself and the knee around. When we do the shoulder again, and when the right foot is eventually fixed I suspect I’ll be appreciating the joys of bunk beds again.
Except for times when I’m bed-ridden (such as for these few days) I am usually here just for a few hours of sleep. ”The boy” (which is the term I use to identify my grandson to the dog) is the one who uses the room during the daylight hours when he is here. “The boy” and I both have hearing deficits, mine are merely catastrophically worse than his (thank heavens). He tends to have a big voice (as do I) so most of the time I can hear him better than most – sometimes way too well. And “the boy” is also McKinley (Baby Dog’s) favorite rough and tumble playmate. Every dog should have a wonderful boy to roll around the floor with, to play tug of war with, and to romp and play with until totally exhausted. They usually collapse at the same time. Life is good.
The eldest girl is more of a momentary angel gliding through Kinley’s life giving tummy rubs, soft kisses, and tummy rubs. The younger girl is presently doing her imitation of the grinch. This too will change. Fortunately, in a small home with an amazing number of people here (the VNA personnel were amazed as adults and children popped into existence at the top of the stairs), there is always a kind word and pat for McKinley. And I never miss knowing someone is at the door here because of McKinley’s “announcing” visitors – although it would be good if she’d announce just a wee bit less.
Today I had a day surgery. Last night it poured freezing rain and it was still a frozen mess while my son-in-law drove me off to meet my fate. He’s a good driver, BTW.
When we got there I was bemused about the name of the unit. Surgery Day Care – it has a certain cachet to it, don’t you think? We have day care for kids and day care for dementia patients – now there is day care for surgery patients. Who knew?
Really, though, it was just plain old Day Surgery. Maybe the person who designated the name was fond of the sayings of Yoda. Day care surgery you will have. Healed you will be.
Beings as this was the place I had the bad experience with the other day I was pleased to find out that I had a mixed bag of experiences. The anesthesiologist (aka the ‘gas passer’) didn’t know sign, but he knew Deaf and HoH and said I could call him by his first name, which was cool. He also was concerned about the ototoxicity of Tylenol and said he’d be careful. He always looked right at me and he had a great voice.
My prep nurse was awesome – again, didn’t sign, but was easy to teach to talk to me rather than around me. The ER nurse was a loss whether he was wearing a mask or not. Fortunately, Andrew (the anesthesiologist) really ran the communication part of the show.
My surgeon forgot about my hearing loss. We do the “I can’t hear you” thing almost every time we meet, but it is not like he’s my primary care, so I tend to be forgiving towards the ortho who is doing his best to put my various body parts back together with toothpicks and glue. He tries hard and he’s honest with me – which is a huge issue for me. Just tell me how it is and will be.
I went out like a light in seconds – then it is really pretty unimportant what I don’t hear. They had my knee marked (cut THIS one) so the appropriate knee was incised in various places to fix the tear(s) and get a light in to get a look around. I don’t know how many incisions since the knee is wrapped and then wrapped again in a huge ace wrap.
To add a thrill to the day my daughter could not come get me as planned as one of the kids came down with something closely resembling either flu or food poisoning. I texted one of my best friends to come get me and his car had a flat on the way. Why the dickens he drove on it until it looked like a black rubber Christmas wreath neither of us are quite sure about. He changed it in the parking lot rather than where he realized he had a flat. Apparently it made sense at the time.
Nonetheless, he and I communicated by text – and when he’s with me he has a fantastic voice so no problems there. He and my brother have the only voices I can recognize over the phone.
I insisted on walking out of the hospital since the surgeon told me I could. The nurse and my pal sorta shook their heads and walked with me – yes it hurt, yes I’m glad I did it, and really, at that time I wasn’t using my ear. Walking on my ear would be rather difficult. Instead, I was limping down a hall looking determined and testing my stability.
Got home to two nurses from VNA (Visiting Nurses Association) who were here to work with my daughter. Amazingly enough, both of them were totally great for a deaf or HoH person. My fav had a pocket full of homemade dog biscuits and the picky Baby Dog ate two of them. Score. Baby Dog was absolutely insane with joy when I got back, which is as it should be. While recovering I was dreaming about petting her – so the shared joy is mutual.
So, I had a successful operation on the torn bits of the knee, was able to communicate easily with a few folks and with determination with others. The operation was done under a general anesthetic so they could have been whispering in Swahili while listening to We Are The Champions by Queen and I wouldn’t know the difference.
I belong to a wee little Druid Grove. The old timers there know my hearing is bad, but I’m a known quantity so they don’t think about it a lot. In fact, a few of them forget it most of the time and start making so much noise I can’t hear what I need to hear. Hidden issues remain hidden even over many years, even after many statements. We all have our own abilities and disabilities anyway from wheelchairs to canes to wretched puns to creaky bones.
Every year at Yule the ceremony begins with lights out and windows open to replicate the creation myth of the Norse – cold and dark. It is probably my favorite part of the entire liturgical year despite the joys of being unable to lip read. Even an Interpreter would be useless in the dark since I’ve got a frozen Franklin cup full of ice in one hand and sometimes a candle in the other.
This year the Dean and the Secretary pointed out early that I’m functionally deaf and how people need to talk directly to me and be sure I know they’re talking to me, not just talking in general. This was because there were new individuals present. Two of our visitors were quite talkative – Chatty Kathy and Chatty Karl. And we also changed the format – all meeting around the feasting table, rather than sitting in a circle in the living room of the Dean. In general, circular situations are more HoH/Deaf friendly. Fortunately, I tend to know the meditation and a good deal of the material being presented after all these years. So even if I don’t hear it I get it – hard to miss a candle being lighted or a frozen cup of ice.
This year the extra people resulted in a very long ritual – since it is in blót format there’s more participation with the Toast, Boast, and Oath. We didn’t have a Sumbal this year (asperging) and for those of you interested in this, there’s a lot of mutually contradictory information on the web. In general I don’t like anything that would get my HA wet.
One thing I did note is that the most talkative one (who didn’t interact much with me) knew how to come up behind a deaf or HoH person and gently direct with her hands on my shoulders so that I automatically moved to one side or the other. I don’t think most folks know how to maneuver around the Deaf of seriously HoH and that may be worth an observation here.
If you want to get attention, stamp hard on the floor a few times (assuming there are not a zillion people around) or pound on the table (again, assuming dishes won’t fly off) so that we can literally “feel you.” Another method is to flash the lights, which our Dean used to great effect with hearies and the deafies alike. That’ll get our attention immediately.
But in a crowd, if you come up behind a Deaf or HoH person a gentle touch to one shoulder or the other either gets a subtle move on my part away from that touch or lets me know you’re there. Please don’t ever grab one or both shoulders and attempt to move someone or swing them around to face you. That’s rude. If you end up moving between two signers, just move quickly, don’t scrunch down. You might want to sign Excuse Me if you know how – just keep on trucking, through.
Since this isn’t a high stakes situation (medical care) and since I’m familiar with the ritual and most of the folks there, this is an under the best of circumstances for me. I can relax and let life flow. Besides, the cooking is always fantastic for the feast.
Today I went to yet another small town hospital to get ready for a day surgery on Monday. Totally different experience. I’m still saying “I’m functionally Deaf” and “I can’t hear you” and “Are you talking to me? Because you’re talking to a computer screen (or the wall or a binder), not to me.” Some folks were standing 10 feet away talking at me (certainly not to me since I couldn’t hear a bloody thing).
Now, mind you, this hospital has signs all over about providing free interpreter services for the Deaf, but there was not one person there who had a clue. I ended up not responding. I’d make them say it 57 times until I understood it. I kept repeating, “I’m functionally Deaf.” Oh gee, there’s that D word again – the Deaf word. I kept wondering what part of “I can’t hear you” is that hard to comprehend?
I kid you not, the receptionist, registration, insurance, volunteer, R.N. – you name it – they were all in the Ozone. SMH – this place is a law suit waiting to happen.
So it took about four times as long as it had to take because I got my back up and refused to do their work for them. I’ve heard this place is lousy regarding service provision (apparently so) and yet it is owned by the same mega corporation that owns the great little ER in Ayer, MA.
The day surgery center is there and I wanted to get the surgery done in 2013 so I’m stuck with the place. But when we go there I’m going to make sure my daughter is front and center and making sure everyone is doing what they need to do the way she did when I got hurt last May.
I had the
misfortune to go to a small, local hospital on Christmas Day. I had a persistent ear infection that simply refused to give up the ghost. When the itching, burning, swelling and pain became simply too much to bear I decamped to the tiny ER in Ayer, MA.
By this time I could not get my hearing aid in my ear due to pain and swelling. For all intents and purposes, I am functionally deaf when the HA is out and the ear canal is swollen.
To tell the truth, I can say “I’m functionally deaf” all day long to people in my regular world and have it serve no particular purpose, but this once it made a difference.
Everyone from the registration clerk to the nurse to the doctor were educated to ask (repeatedly) if I wanted an interpreter. They all knew how to get my attention. They all understood my need for a quiet location if I were to understand anything at all. They all got my attention before speaking to me and spoke directly to me without looking away. I’m so totally impressed with all of them.
Because they accommodated me with a private room and quiet environment I was able to cope with a combination of what sound I could hear and lip reading. Also, to be honest, I didn’t want to wait for the staff terp to be called and arrive. Had the conditions not been so ideal, however, I’d have requested a terp in a heartbeat.
I knew what I needed and I got the prescription ear drops promptly (ahhh, blessed relief!). However, I’m still not wearing my hearing aid until the infection is resolved because I have to carefully sterilize the earbud before putting it back in so as not to cause another infection. Which means I’m still functionally deaf.
Now, to be fair, this is the same facility I’ve raised holy heck with a couple of times over what I considered inadequate treatment of a relative of mine. Different issues, though. Different doctors. Maybe more enlightened times are coming. We can hope so. I’m tickled pink.
Cogent thoughts on the Mandela interpreter debacle
Originally posted on kramissah:
I thought a lot about the incident at Dr. Mandela’s funeral related to the fake sign language interpreter, http://www.cnn.com/2013/12/11/world/africa/mandela-memorial-fake-intepreter/?hpt=hp_zite1_featured. I struggled to find the words to express my sorrow to the Mandela family because this drew attention and continues to draw attention from honoring him, remembering his great deeds, and spending precious time with his family to celebrate his memory. At the same time it gave me a chuckle (don’t misunderstand, please read on).
Here are my two cents. First, for those who don’t know who I am. I am a Ghanaian, born and raised and moved to the U.S. when I was a teen. I can’t believe how time has flown! I have spent half of my life in the U.S among Hearing people and currently spending time in both Hearing and Deaf communities.
I agree with all the reactions around the globe. It is…
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