Tag Archives: medical

I Can Hear Clearly Now, Sort Of: On that Hearing Test

Posted on by John

So this past Wednesday, I toddled off somewhat unwillingly to my audiologist’s office for the pending hearing test. As I noted in the previous entry, I knew I needed this checkup as my role calls for me to be able to hear in more and varied situations and to work with individuals one-on-one and in groups.

The last audiogram (that’s the technical word for them) I had was in 2018, but I barely remember that. I think I intentionally block them out. I should probably call them audiograms more often anyway, as the word “test” connotes academics, and the feeling that I am not doing as well as I would like can make me feel a little bit of that failure feeling. The last audiogram I recorded in this journal was in 2016, and can likely be found under the “Hearing” tag.

I sat in the booth with a different audiologist and, I guess, her student who was doing most of the work while under supervision. First, they checked my ears to see if there had been any wax accumulation, but she said apparently I’m doing a pretty good job of keeping that at bay. I’ve learned some lessons after my much-documented challenges keeping hearing aids going as they constantly filled up with the annoying stuff.

“How long is this going to take, approximately,” I asked.

“It should take no more than 20 minutes” she replied. 20 minutes? It felt like an hour easy!

This test was different than the one I recalled from 2016. First, they had a recorded male voice reading back the words. They start to become predictable to some extent, or at least they make us think they are, as they say “Baseball,” “Airplane,” “Northwest,” and the like over and over again. And of course they test each ear, sometimes playing white noise or a wind sound in the other ear. Another, very real challenge I experienced was shutting down my inner thoughts: dinner, sleep, work the next day, etc.

One of the words that kind of caused me to laugh… it sounded like he said “Say the word Bi*ch”. Hmmm, I’m pretty sure he didn’t say that, I thought. “Ditch?” I tried tentatively. Probably… not that either. Ah, well.

I then had to get the beep test. I think I actually did better on this part, and especially when they put on the big clunky things that kind of fasten to your head as honestly I could often feel the beep more than hear it. We laughed though when at the end of the test she said something to me and my hand shot up as if I’d heard a beep again. “Sorry, you just get conditioned to do that’” I said.

“I understand,” she replied.

The results were a little worse than the last time. She said something like my word discrimination dropped from 80 to 55% in my left ear, and my right ear remained profoundly deaf as it has been for some time. “It’s probably time for you to consider a cochlear implant, especially on that right side” she said. “And as your left-side clarity diminishes”. I have noticed that this has happened, for sure, as my Norrie Disease-related progressive hearing loss keeps progressing. A little disheartening, but such is the way I guess. I just don’t know about CI’s, because I’ve heard all sorts of stories about them. There is a possibility that it might not work, and I think you don’t really have a way to fall back if they don’t. But I know that time is likely coming more quickly than I would like.

Meanwhile, she went ahead and made adjustments to the aids as a result of the tests. And they’re kind of a mixed bag. Sports sound a lot better, and I was much more able to hear my supervisor and trainee today at work. But I am still kind of working to adjust to my wife’s voice and others, as the sound while turned up is also somewhat muffled. I think I’m getting there though and will just have to be patient, while hoping others are patient with me. The paratransit vehicle I take to and from work also sounded really loud for the first few days, but that is starting to calm down as well.

So yeah, this issue is always going to be complicated. But ultimately I am grateful to those folks and their good work of really getting the aids to work for my needs. I still haven’t tried them in the holy grail of hearing, the restaurant, but I’m sure that is coming soon. That will really tell me if a difference has been made. And even more the National Industries for the Blind conference I will be attending in three weeks as a result of winning Employee of the Year. I’ll keep you posted, and I mostly write about this to help parents of children with Norrie gain some insight into what this experience might be like, again realizing that my voice does not represent everyone’s. I do hope it helps.

UNDERHEARD: Eating Out While Deafblind

Posted on by John

If you are like me, you wonder how and among whom the restaurant custom started. The idea of eating out in a place humming with activity, where all sound seems to merge into a full-on roar at times and you are left at the mercy of the wave as you, hopefully, enjoy some good food.

And of course before continuing, I fell down a rabbit hole and discovered, via a website on The History of Restaurants that they were supposedly started in France in 1765. I cannot attest to the veracity of this story, and wonder if some other culture might also lay claim to their origins. Anyhow, it’s good food for thought.

However they started restaurants are a venerated tradition of U.S. holidays and continue to bounce back after the dark days of Covid. Well, sort of. I accompanied my wife, her parents, sisters, and my niece and nephew by marriage to Red Lobster. That particular establishment does not seem to be faring as well, with many having gone into temporary closure and the business as a whole in bankruptcy. I guess they served too many shrimp.

We went to celebrate Father’s Day on Saturday, as is usual for us. It’s often less crowded on this day than if we wait till the day of, though going to eat at Fullers, a delicious local (to Fayetteville, N.C.) eaterie that serves just about everything Southern you can think of for Mother’s Day on the Saturday before, the place was brimming. I joked that it felt like someone was drilling a hole in my brain, because there’s just no really good setting on my hearing aids to help me handle such ruckous. But I made it through, as I always do.

Red Lobster, by contrast, was relatively quiet. We arrived at just prior to 2:00 and departed just after 4:30. I conversed some with those in my immediate vacinity, and ate my fill.

Ok first I had one of those delicious cheese biscuits, which according to my last doctor’s visit I don’t really eed to be eating. But hey, I offset that with a side salad. When I chose to order that salad, I expected to get basically a bowl of lettuce with bleu cheese dressing (another of my guilty pleasures). But actually it was loaded. Little flecks of meat, another kind of cheese (I’m not food afficianado, though I did apply to a food magazine as editor and they told me my resume was good once), croutons, and other stuff. Hey, my wife and I joke that my food critique is as follows: Real good, Good, Ok, not good, nasty! So there you go. Anyway, I had to stop eating before I became full off just that serving.

As we broke bread, talking about work, home, and life, the main course arrived. As I had on my previous Red Lobster visit, I’ve only eaten there twice if you can believe that, I had stuffed flounder (real good) with some kind of seafood sauce) and fries. I decided to walk on the wild side and went for a glass of mango lemonade, (good, I guess)? I don’t eat a whole lot of seafood, but I suppose it can be good on occasion, and I know it’s generally healthy as well.

The last sort of interesting thing I want to think about as a blind person is how we handle visiting the restroom. I needed to go before hitting the road, and it just made me think about my general strategy for finding what I need to find in there. When I enter through the swinging door, I immediately move toward the right wall and make my way around in a counterclockwise direction. This is because, at least in most of the men’s rooms I’ve seen, the sinks to wash hands are just to the left of the entrance with toilets in front. If I move in that direction, I usually manage to locate a stall, exit it, and get to the sink without any embarrassing mishaps. This time? Well, it was sort of strange as I did bounce off of someone as I made my way to the sink. Naturally, he then began providing assistance. It didn’t go completely sideways at least.

So there you have it, a little look into my mind as I work to negotiate the social norms that surround a typical holiday in my family. I enjoy it mostly, and by this point I know that most of the concerned parties know about my challenges and do not think any less of me. But sometimes having these hearing problems can be a struggle. Like when I find myself on a paratransit vehicle with a new driver who loves to talk, but I can’t comprehend him over the engines, as happened recently. I’ve learned though that the best, and really only, thing I can do is make the other person aware of this and take it as it is. More of my shenanigans as the summer time unfolds.

The Heart Knows: On My Second ER Visit and Anxiety

Posted on by John

The first thing I noticed in the hospital, as I lay at about a 45-degree angle in that bed, was the bells. As I listened, some in my room synchronized with others in other parts of the ER, drifting apart and coming together with a somewhat soothing regularity. I also had to contend with the calls on the intercom, often in code: “Cassidy, you have a call on 5 7 8 3 6.” And on and on. Sleep? Hardly, especially as the automatic blood pressure cuff squeezed at chosen intervals.

Yes that’s right, I made a second trip to the Emergency room in two years, this time mainly because on waking the morning of Saturday the 24th, my heart was just about pounding its way out of my chest. A rather vivid nightmare had launched me out of bed and towards the bathroom to relieve myself, and as I moved my rate jumped to frightening levels. I told myself, Just lay back down and it should begin to decelerate. But when it didn’t, a sort of panic feedback loop resulted that made me incredibly nervous, until I finally made the tough decision to wake my wife at 5:30 AM and head on in.

Of course by the time I arrived at Wake Med Hospital, things in my chest were back to relatively normal. Even so, I stayed in that cold Emergency department room (door closed by the doctor to protect against the frightening and surging Delta variant of COVID, for almost 6 hours. In addition to the blood pressure cuff, I had some 12 leads attached to my chest to measure whatever was happening in there, the pulse monitor on my finger, and a couple of blood draws done. The second was completed in my hand by an intern, and honestly it didn’t feel good. That spot still sort of hurts.

Thankfully, nothing unusual was found while in that setting. Still, I am going to visit a cardiologist (again) just to be sure that nothing is going on that should get treatment.

Why am I telling you this story? Because I, along with those at the hospital, believe that the primary reason I may have experienced this episode is mental health/anxiety. It builds so slowly and insidiously that one barely notices until physical health effects are felt. Ever since my heightened awareness, I have noticed that I tend to have fewer heart surges (noting that on Saturday night after my discharge I nearly had one again due to the anxiety over that morning’s trauma). As such, I have really started doing the deep-breathing exercises my Apple Watch recommends, which I’ve found can often help me relax whenever I find myself in stressful situations which is nearly constantly as an adult right?

Especially as we are still battling this seemingly endless pandemic, I implore you to be aware of how your own mental health, and by extension physical health, is being effected, and take time to take care of yourself. And as far as I go, keep me in mind next Wednesday as I go into the cardiology office and hope that there are no bigger issues afoot. I guess I am just glad that I can get these things looked at now, and while I think our medical system is good, I very much decry the costs with which one must contend while trying to simply stay alive.

Hit Me With Your First Shot: On Finally Getting the COVID Vaccine

Posted on by John

My employer decided, after some long, hard thinking, to host a COVID vaccination clinic so that those of us who hadn’t gotten poked yet could safely do so. As soon as this option was mentioned, I signed up. I do not, after all, know when another opportunity might come for me to take this important step not only to improve my own chances of avoiding this nat virus, but also to make that much more of a dent in the still-too-high overall case count.

I guess because they did not wish to waste doses, people who were not employees were allowed in to get shots as well. Last I heard, we had 150 available, and only 115 employees had signed up. (I bet the others who came in were wide-eyed at all the blind folks roaming around, the modified paths with variable flooring and low plastic fences to keep us all in line that make me feel like we’re in a cattle chute, and the unusual-looking machinery).

And speaking of cattle chutes, that’s how the process of vaccinating all those folks in a relatively short time felt to me. My scheduled appointment time was 2:00, but I was not surprised when someone came to get me at 1:18 to “pre-register”. They tried to collect my basic information at a table set up right in the middle of the factory floor, which meant not only was I competing with pounding said strange machinery, but also with very high ceilings which does odd things with the sound. I could barely hear myself speak, let alone what the woman sitting there was asking me. We managed though, I signed the consent form, and took a seat in my second chair after having arrived over there.

Four chairs, two rooms, and a somewhat disconcerting number of people later, (I do think we were fairly distanced at least), I was finally ready to be jabbed. Ever the baby, I had to psych myself up as she said “3,2,1,” and popped the needle in. I was then given a fact sheet, a card that noted how long I needed to wait to watch for reactions (mine was 30 minutes, since I noted a Penicillin allergy) moved through two more chairs and left in what was formerly the break room but had been re-purposed as the “Observation room”. Makes it sound important, doesn’t it. Anyhow, I regretted not having brought my phone along, because what was I to do to kill the time! Think? Listen to people gossip? Yup.

It’s hours later now, and so far so good. The only issue I have is soreness at the site of the shot, but I fully expected that. My second dose of the Moderna vaccine will be on April 26th. If you are able to safely, I hope you can get vaccinated too, and especially as we’re seeing the numbers start to inch back up again. I feel very sad that we can’t do anything for those many who have already lost their lives, but perhaps the best tribute to them would be to get past this thing and retain some normalcy. I am looking forward to the things I’ve not done in a year, such as: eating in a restaurant, having a hot beverage at a coffee shop while absorbing the writing vibe, riding public transit and enjoying the background hum of my local community, and going to the occasional live sporting event again. Here’s hoping! Continue reading →

My Covid Testing Experience

Posted on by John

In this year where any kind of disaster imaginable seems possible, one could hardly blame me for being a little jumpy. Over the past couple of weeks, at my job’s temperature checks, I have realized that my core body temperature is almost always below normal. Well especially in the morning, as it often clocks in at 96.7 degrees, and I feel that cold when sitting in my room after dressing for the day.

On top of that, my nostrils have been a bit drippy and my throat congested for some time now. When this happened last year, I simply assumed that it was some kind of allergic reaction that would eventually calm down, as it did. But this year, with the ever-present threat of Covid-19, I was wary.

So all of those things converged this morning, as my temperature bottomed out at 96.1, and I was so cold that my hands shook and teeth rattled. I also felt so congested in my head that it seemed my brain was swimming. I am aware that this is probably not Covid, but on calling out of work to get the sleep I needed I decided I should get myself tested for the benefit of my coworkers, if nothing else.

And on that sleep? Ah, it was glorious. After some Covid-induced dreams, I finally, wonkily emerged around 12:30 and stepped outside for some air. I was relieved to learn that my temperature had increased to 98.4, and I certainly was warmer. But I still felt so yucky that my time outside did not last long.

So, my wife had made the testing appointment at a Cary, N.C. Urgent Care center at 3. After running some other errands, she drove me over to the clinic. This was not a drive-up appointment, but rather we were to enter the room to have the test administered. I was surprised by this, but admired the way they had things working.

First, we called a number and checked in, at which time we were told to wait in the car until contacted. It took about 12 minutes to get the call, with the office having texted a link that would have let me see my spot in line. Their texting was used well and kept the patient abreast on all progress throughout the experience.

Once we entered, with the support nurse holding the door ajar so we needed to touch nothing, she first asked about symptoms and then affixed something to my pinky finger, I think she said to test blood flow. Then another quick temperature. Check, still holding steady at 98. And finally, the real fun started.

Another man, in what capacity I am not entirely sure but I suppose a doctor-type person, came in to do The actual test. “It’s not too bad,” he said even as he offered me a Kleenex. Then, after helping me extract the mask from its entanglement with my hearing aids, he stuck the swab into my nose.

Ok, that’s it right?” I thought. But no! It went back, and back, and back, and surely took some of my whatever lobe when extracted. “Ow ow ow!” I said as I tried to keep myself from separating from the swab. Whew! That may have popped something into place, because much of my congestion has actually stopped, at least temporarily. My nose still hurts a bit, but yeah I guess it’s survivable.

And now I wait for probably three days. He said if it’s positive, then I’ll hear from the health department and that center. If negative, I’ll get a letter in the mail in approximately 2 weeks. We’ll see. If nothing else, it’ll give me a little peace of mind for as long as that lasts. I’m sure there are thousands of other tales of those who have been tested, many less dramatic than mine. But this is my quintessential 2020 story, and let’s hope it’s the last I have! Maybe things will settle down now?

It’s Like Pulling Teeth: My unexpected run-in with an Oral Surgeon

Posted on by John

If one is me, one asks the question how many different things can one endure in one year. Ah the craziness of 2020 continues.

So first the backstory: for something like the last year, I’ve noticed a slight protuberance in my jaw. It was a minor aggravation, and while I knew I needed to nip it in the bud at some point I just never really took care of it. Well ok, I can admit that it has more to do with a lack of desire to tangle with our medical system, which while it has big problems, especially as relates to how we Americans are expected to finance care, is actually pretty good. I’ve become something of an unwitting veteran in the last few months, as you know.

Anyhow, in the last three weeks or so, this lump seemed to grow at an alarming pace. My wife and I finally concluded that something needed to be done immediately to ensure that nothing more sinister than a tooth infection was going on. With the Covid pandemic, finding a dentist that will see me on short notice is a challenge. After being rejected by the UNC system, I just put the word “Dentist” into Google Maps and called the first place that came up: Zen Triangle Dentistry.We entered on Saturday shortly before 12 PM into a fairly small operation with roaring air purifiers and our masks on. They gave me a couple of quick, complicated X-Rays where I was instructed to hold my head completely still with no head clamp and while biting down on the teeth part in front of me. Do you know how difficult this is?

After palpating the lump and feeling along my neck to see if others existed, the two individuals who were checking me recommended that I go somewhere else to have it thoroughly checked to rule out the possibility of cancer. While I had already been aware of such a possible conclusion, having it spoken aloud made the rest of that weekend fraught with emotion. I just tried to hold it together and survive till Monday when we were finally able to visit an oral surgeon at High House Oral Surgery.

Entering this office early Monday morning after fortunately having been worked in for an emergency visit, I was immediately put at ease with yet another x-ray, this time with a clamp and a bar onto which I could hold, both of which made the process measurably easier to bear. The oral surgeon told us that he believed it to be an abscess that he could drain, despite its having appeared so prominently on the outside of my gum. The catch is that the tooth on that side would need to be pulled, and oh yeah while we’re at it we may as well get the other two bottom teeth on the opposite side that have also grown in wrong. AAAHHH! When compared with what I thought would be the outcome though, suddenly an involved dental surgery didn’t seem so daunting.

So once we got the bill squared away, and it was of course high but not as high as I thought such procedures would be, we were ready to go. I was surprised that they were so quickly able to go ahead with the process. Everyone convinced me that, for various reasons, going under general anesthesia would be the best idea, and after the fact I have to say I am glad this choice was made. “The only real issue,” the surgeon said “is that sometimes you don’t wake up”. Well that’s scary, but it’s a risk you take I guess.

The feeling of getting ready for action was similar to what I had experienced in the Emergency room a little while ago with the heart thing. Cold EKG leads were stuck to various parts of my body, then an IV was inserted. I love my veins, as their easy visibility means a lot less pain for me. Then the automated blood pressure cuff was placed (my BP numbers are still good now which makes me happy), and the pulse monitor placed on my finger. I get nervous hearing the beep beep that indicates my heart beat, but then I also learned how to slow it down with my mind using bio feedback.

I reclined in the chair waiting, waiting, waiting… for things to start… and then I had gauze in my mouth and was being gingerly led to a waiting wheelchair to be rolled out. I, thankfully, have absolutely no memory of anything the was done. My wife says, though I counter that if it wasn’t recorded it didn’t happen, that my “high conversation” was hilarious. I let whatever thoughts popped into my brain slide right between my lips, which frightens me a little. That’s a big reason why I don’t like messing with control substances.

And so far so good. The only incident I almost had occurred Monday evening when, feeling normal while lying in bed, I thought I could head upstairs like normal and slurp down some mashed potatoes. And my body disagreed. I just kind of blacked out for ten seconds or so then headed back downstairs and into bed, where I needed to stay. I will find out tomorrow (Thursday) if all is as well as I hope, but I have been spending the week popping a variety of pills and trying to feel more and more like myself.

Have you ever had any kind of surgical intervention? According to my very unscientific Twitter poll, 58% of respondents say they’ve had more than one, 29% said only one, and the remaining folks said not at all. I guess there is always a first time for everything.

Hear It: My Challenging Wax-cleaning

Posted on by John

I should open by saying that I am trying as best I can not to come across as overly critical of anyone. I do not think for a minute that the medical professional who saw me intended for my experience to be as it was, and there are things I could have done to make it less likely to have gone that way as well.

That said, I have a disorder called Norrie Disease that renders some unable to communicate what they are feeling or thinking, due to moderate to severe intellectual disability, autism, or some other developmental challenge. So, I take seriously the idea that I can attempt to be a voice for others, of course not having gone through exactly what they are but still being able to give some idea as to what it may be like.

So an audiologist with whom I worked looked at my ears on my last visit to have the aids cleaned. This happened right before the phrenetic events of my Christmas vacation, and in many respects if the aids had to die on me again, I am highly fortunate that they didn’t wait past December 20th to do so. I can’t imagine the displeasure of trying to get by with only one working ear in large family gatherings. Even with both working, functioning in such gatherings takes work.

Anyway, she determined that my right ear in particular was packed to the gills with wax and should be dealt with immediately. She’d wanted to schedule an appointment for that day, but not surprisingly this wasn’t available. So, she had me booked to go in today.

For this appointment, I had to go to UNC Hospital, which is practically on the UNC campus. I managed to get to the Audiology department in time for my 9:45 appointment and settled in the lobby where they were watching some sort of weird cartoon. I also heard kids scampering around, probably burning off energy as their parents tried in vain to keep up.

Soon, I went in to see the nurses and have my initial forms filled out. They weighed me, I’m up to 141 pounds which may be the highest number this skinny person has ever recorded. Then, they started asking me all sorts of scary questions about disease, family history, etc. Standard stuff I know, but nevertheless it makes me nervous.

After a short wait in a doctor’s office, thankfully not too cold, and just as I pulled out the iPhone figuring that it might take longer for him to arrive, the doctor showed up.

“Ok, what are we doing here today?” he asked.

“I’m here to have my wax cleaned out,” I replied. “My audiologist says it’s starting to be a real problem.”

“Ok then, hop on up here,” (I was ushered to a somewhat reclined chair where my head was then placed firmly against its back at an angle), “and take out the aids, one at a time so you can still hear me and will know what to expect.”

Into my right ear went the air machine. I actually don’t really know what it is called, except that it made a fair bit of noise. I could immediately feel it sucking, and thought to myself “ok, maybe this won’t be so bad after all.”

And then, oh but then. He gradually amped up, commenting: “man this stuff is really packed in. That’s common for hearing aid wearers though.”

If I had remembered my last attempt at having this done, I would have suggested that we go ahead and stop there, just letting him prescribe me the eardrops he eventually did recommend I get. You administer them to each ear approximately three times a week for a month, and they’re supposed to loosen up the wax so that it will come out more easily. I’d done this a year or so ago, but then we never went forward with the larger-scale wax removal.

Unfortunately for me, this thought didn’t occur to me. As the machine pulled harder and harder in my ear, first tears began rolling down my eyes.

“Are you ok?” he asked.

“Yeah, this sort of thing just makes my eyes water,” I replied. I’m not crying! I thought to myself.

Within the next few seconds, I practically was crying. I kicked the table, screamed “ouch!” and all but forced him to stop. Oo man! I don’t think I’ve ever experienced pain like that. Oddly, the only thing I could think was “I wonder how on earth women go through with childbirth?”

“I’m about to pass out!” I instructed him once the machine had ceased operating and I’d removed both aids. “Would you happen to have any water available?”

I guess it had occurred to him that I might just need some water at some point, because a full styrofoam cup was in my hand a second later. I gulped it greedily, and just managed to stave off that unwanted episode.

After this, he decided to go ahead with the drops after all and have me return on February 13th for an attempt to complete the process. I was more than a little relieved to get out of there with my hearing in tact.

Except, when I plugged my right-side aid back in, all I heard was the faintest sound of its turn-on tone. “Oh no,” I thought in panic: “I may have lost a lot of my hearing in this ear!”

I muddled my way back on to a bus to Franklin Street to go to Walgreens and collect the prescription, then fired off an email to one of my audiologists to ask what she thought might be happening. I said “and if this loss is permanent, can I begin the process of getting a cochlear implant?”

She replied, correctly I now believe, that things would probably be ok in short order. My canals are kind of small, and thus it’s easy to get things like wax and such lodged in a place and way that it shouldn’t be. As the day has progressed, I’ve noticed more hearing returning as the pain lessens. All I can say to that is Thank God! I envisioned having to make radical changes to my navigation and independence, which I would have done if necessary. But I won’t lie, that sort of adjustment would be hard. I’ll probably have to make it at some point, I imagine.

So I guess the main reason I’m writing about this is to note the importance of really sitting down with the patient, doctor, and perhaps someone who can communicate on the patient’s behalf before treatment is initiated and generating a plan. The thing is, I know that doctors rarely have time to do this. If it doesn’t happen though, it could definitely have less-than-desirable consequences.

Also, it is important to listen to and be aware of the patient’s responses. I can say that he did suspend treatment once it became clear that I could no longer stand it. I’ve heard of cases where this hasn’t happened, and I’d bet it would be more likely if the patient was unable to speak for him or herself.

Just some stuff to think about. I hope all will be normal for me by the weekend, as I still feel some lingering pain but it is now more noticeably decreasing. A nap when I arrived home helped with this. I hope I don’t have any balance issues when returning to work tomorrow, but we shall see. More soon.