Tag: life with hearing loss

Bread Trucks and Blood Pressure: Finding Humor in Life’s Challenges

funny. You see, I’m a Celiac — I can’t eat gluten because of an autoimmune disease. I was diagnosed with it as a “birthday gift” on my 39th birthday, and as a former carb-lover, giving up bread and pasta wasn’t easy. Back in the day, gluten-free options were hard to come by and, frankly, not very tasty. And, let’s be honest, gluten-free bread is still the size of a postage stamp.

Life these days is hectic, crazy, and sometimes full of stress. Lately, work has only made it worse. My cardiologist told me I need to lower my blood pressure. I asked him how to do that when people around me constantly annoy me and drive me crazy. I’m still waiting for a solid answer to that question.

I try not to take everything too seriously — not because I think life is a joke, but because we’re all dealing with serious things. We need to find humor in what surrounds us. Unfortunately, that doesn’t seem to help much with my blood pressure.

Losing my hearing was tough. I went through the stages of grief because losing such an important sense impacts my quality of life and everyday well-being. But five years later, when people ask how it affects me, I joke that it’s actually a blessing for my husband — I don’t hear any of his annoying remarks anymore.

So, having a bread truck full of gluten following me around was pretty funny. Who knows, maybe it’ll even show up in my dreams tonight.

#GlutenFreeHumor #CeliacLife #FindingTheFunny #LaughThroughTheStruggles
#CeliacWarrior #HealthWithHumor #BreadTruckChronicles #AutoimmuneLife #GlutenFreeJourney #StressAndLaughter

“Still Deaf, Still Together: Navigating Marriage with Hearing Loss”

Had a Great Conversation with My Husband

This morning, I had a great conversation with my husband. I was still lying in bed, while he was getting dressed in the walk-in closet. What made this conversation truly memorable, however, was that I was without my hearing aids. He was talking to me from beyond a wall, and I could only hear sounds, not words—kind of like the Charlie Brown cartoons, where all you hear is noise instead of actual speech.

I kept telling him I didn’t have my hearing aids in yet, but apparently, even with his excellent hearing, he couldn’t hear me. So, when he finally came into the room, I calmly looked at him and said, “You know, I’m still deaf.”

With my hearing aids in, I can hear quite well, but there are still limitations. I can’t hear well from the other side of the house, or beyond walls, and occasionally, in a noisy room or crowd, I can get a bit lost. I can usually follow most conversations, and my brain fills in the gaps for what I miss. But there have been times when my brain got it wrong, and I completely misunderstood what was being said—or agreed to something I would never have if I had heard the conversation clearly. Thankfully, nothing I agreed to in those moments was anything too crazy.

My hearing loss is not new to my husband. He was there when I lost my hearing overnight, four and a half years ago. He stood by me when I was scared about navigating a hearing world, feeling overwhelmed at social gatherings because I couldn’t understand what people were saying. He was there when I fought with our health insurance company to get my hearing aids covered and when I had to adapt my entire life to my new reality without a crucial sense.

Yet, despite all of this, my husband—who’s been with me through every step of this journey—still sometimes forgets that I can’t hear a thing without my hearing aids. It can be frustrating in a marriage, but luckily for him, I have a sense of humor (most of the time).

Maybe it’s because I lost my hearing that we’re still together after almost thirty-five years. After all, I don’t always hear what he says—the good or the bad.

#HearingLoss

#HearingAids

#Deafness

#MarriageJourney

#LivingWithDisability

#HearingLossAwareness

#DisabilityAndLove

#HearingImpairment

#LifeWithHearingLoss

#LoveAndLoss

#DeafAndProud

#HearingChallenges

The Importance of Patient Communication in Healthcare.

Or Bruised, Bandaged and Ignored!

This morning, I had my routine monthly blood tests. I get these quite often and know my body—and my veins, which are sometimes tricky. When I arrived at my appointment, I noticed a new phlebotomist. As usual, I explained that my veins tend to roll and that one side is better for drawing blood.

Unfortunately, my advice went unheard. Not only did he overlook my concerns about my veins, but he also failed to address my need for clear communication. I had told him that I am hard of hearing and need him to speak directly to me instead of turning his back.

I work in a fast-paced customer service job, speaking with many people every day. At the end of a long day, all I want is to remove my hearing aids and enjoy the silence. Having spent most of my life in customer service, I understand the challenges of balancing customer demands with providing quality service. But I also know that true service goes beyond just hearing; it’s about truly listening.

Dealing with an invisible disability comes with unique challenges. Listening to people costs nothing but can make a huge difference. Today’s experience highlighted a gap in how some service providers train their staff—not just in technical skills, but in valuing patients as individuals. It felt as though I was just another patient being processed through a conveyor belt.

By the time I left, both of my arms were sore, bruised, and bandaged. But what left the deepest mark was the feeling of being ignored.

Adapting to Hearing Loss: My Personal Journey

At my last Pilates class, my instructor told me that I am quick to follow directions. I didn’t think much of it at first—after all, I’m naturally fast. But as I reflected on it, I realized that my speed isn’t about being prepared. It’s because I can’t hear.

You’d think that losing my hearing, wearing hearing aids, and not enjoying background music in a class would make me slower to follow directions. In fact, it’s the opposite.

I suffer from SSHL, or sudden sensorineural hearing loss, which took away my hearing almost overnight in 2020. It happened during the height of the pandemic, and securing an in-person doctor’s appointment was difficult. By the time I saw an ENT, my hearing loss was permanent.

Losing my hearing isn’t just about the absence of sound; it involves my brain, too. Comprehending what’s being told to me, processing information, and responding appropriately all require more effort and concentration than they did before.

We all cope with losing a vital sense in different ways. Some retreat into themselves, others embrace their new reality, and some, like me, find ways to adapt. After the shock wore off and I realized that my life would never be the same, depression set in. I was consumed with fear about how I would continue living. It’s hard to work in customer service when you can’t hear what people are saying, especially when masks and barriers were mandatory.

At first, I avoided crowds, restaurants, and most social interactions. I thought I was doing the right thing, but in reality, I was isolating myself. As an introvert, I found it strangely comforting to be alone. But then I realized I still enjoyed being around people. So, I developed a kind of “superpower”—anticipating what people were about to say or do. Not being able to hear forced me to watch and observe. I learned to read body language, facial expressions, and subtle cues. In noisy environments, I became a silent observer, finding the smallest gestures fascinating and, oddly enough, entertaining.

When my Pilates instructor complimented me on my quickness, I just smiled. People don’t need to know that my brain is constantly processing, predicting, and observing. It’s my way of adapting to a world I can no longer hear in the same way.

We all have our coping mechanisms, this is mine and I hope that everyone finds their own way.

Nothing makes sense

What happens when you lose your hearing? Do you suddenly get a superpower ? A brand new sense or an enhanced one. They say that when you lose a sense, another sense gets stronger to compensate. When I lost my hearing there were no sudden bells, whistles or trumpets announcing my new strengthened alternate sense. Most likely because I could not hear them.   Nothing exciting happened, I did not become spiderman and the only superpower I got was the on and off button on my hearing aids. Hence my lovely pair of hearing aids, nice expensive silver colored. Not even a fun blue color to match my eyes.

My sense of smell did increase slightly  but I am not sure that this is a good thing considering I have a dog and a grand dog.  While I did loose a major sense I did gain observation, not by choice but by necessity. Since I can’t always follow a conversation I started to pay more attention to facial expressions and body language. You learn a lot from watching people and standing on the sidelines. In big crowds and noisy places it is very hard for me to hear, so standing on the sidelines was out of practicality. You see if someone is uncomfortable, happy, deceptive and you start getting a sense of what they actually think and feel from their body language. For me it is still a work in progress to understand everything I see but this is a welcome challenge and a it is little entertaining.

You also learn a lot from looking at people’s faces when they speak to you, surprisingly many are not comfortable with people looking at them directly. Might be that eye contact with humans was lost during the pandemic zoom era. But as a hearing impaired person it is a valuable tool as I am learning to read lips.

My husband would say that despite my new observation skills I still do not pay attention to what he says, but in all fairness I didn’t pay attention before I lost my hearing so technically it’s a habit and not a choice and maybe a tiny superpower. I took me 35 years together to perfect this skill.

Eternal student

Every Tuesday I wake up very early for my language class. It is an international class so people log in literally from all corners of the earth. It is still dark outside, cold and everyone else is still sleeping. Even the dog does not understand what I am doing up at this  crazy time. And every Tuesday when the alarm goes off and I get dressed quietly in the dark so I will not wake my husband up, I ask myself – are you crazy, why on earth are you doing this? Go back to sleep.

And yet, after each class I am happy and I  smile, as tired as I am, I really enjoy this class even though I am not really good in this class. 

As an adult it is fun for me to learn new languages and just learn new skills. I find it really good for my soul as it brings me joy and probably helps combat dementia or alzheimer. Some tell me I am nuts for taking on new study areas. After I finally finished my MBA my husband looked at me and asked when I am going to get my PHD, I said never. But these days I am reconsidering. 

We are never too old to learn and yes I finished my masters at 54, but who says I can’t get a PHD by 65, I am not in a hurry and I don’t mind being an old woman when I get my degree. This is part of the fun of doing  new things when you are older and have the freedom to follow whatever your heart desires. Macrame, new language, or anything else that suits me at the time.

And if waking up in the dark, logging in to a class with people from all around the world makes me happy albeit tired, great. I shall continue, who knows maybe I did find my new calling as the eternal student.

Tales from the left ear January 2023

Just because some of us are different does not make us worse than someone else. There are stigmas for being hearing impaired, we are old, we are mentally challenged, we are not as intelligent and we have selective hearing and these are just some of them. 

Hearing aids come in ugly colors, there are no fun ones probably because the manufacturers think that we want to hide them as well. My hairdresser asked if she needed to cut my hair so no one would see them. I don’t hide my hearing aids, I love my hearing aids as they allow me to function but I do wish they were blue or sparkly purple. I dont hide them at all and wear a ponytail most of the time.  I don’t hide my hearing aid but it is not obvious to the general public as mine are small. So when I talk to new people I explain my hearing aids and that you need to look at me when you speak. 

Sometimes people are weird, I had a person then go to my ear and yell straight in my ear, needless to say that this hurt like hell and most likely I will not interact willingly with that person again. The other response I usually get is how did I lose my hearing and when I explain that a virus attacked my ear, they seem to back away thinking this is infectious. Of course I have those who just tell me how sorry they are for me. Again people are weird. People tell me I am very well adjusted for someone with this loss, but then again I am an eternal optimist although even I have my good and bad days.

I am different, I am not better or worse, just different!

Hearing Aids Cost

My left ear has gotten a new hearing aid, I love the new aid. Everything is clearer, it is water proof so I don’t have to panic when I enter the shower or be afraid to walk in the rain anymore. Or even take them off at the beach or pool and not be able to communicate with others while at the beach.

My last couple of vacations were not as easy ever since I lost my hearing. At the beach or the pool, I took the hearing aids off and was disconnected from the world around me. When we went on a boat ride I was so worried they would get wet that I didn’t wear them at all and made sure to put them in a waterproof bag. 

I am glad technology finally caught up and people with hearing loss can function better now in more situations, but the cost of this catching up is a lot. These hearing aids are expensive and insurance companies cover a fraction if they cover anything at all. We are talking between $3000 to $5000 and these aids need to be replaced every couple of years. This is not an expense that is trivial. A friend asked me a while ago what did my husband get me for our anniversary and my reply was new hearing aids.

Unfortunately those with moderate to severe hearing loss can not use the over the counter cheaper aids so that is not a solution. Costco has a nice selection of hearing aids but not from all the companies and not for all the devices available. 

 I believe that just like pre existing conditions were  outlawed from being denied insurance coverage, there needs to be a movement to add hearing aid coverage to regular insurance.  

Being hearing impaired is not a choice, being a kind courteous person is!

I am a member of many hearing loss groups on facebook, when I lost my hearing they helped a lot with not feeling alone and finding someone who understood my struggle of dealing with losing my hearing overnight.

Most days I am good and I believe I have adapted mostly to my current situation, but we all have our bad days. Days when the ringing in the ear is so loud that it does not matter what setting your hearing aid is on , you can hear absolutely nothing. Days where you can not figure out what people are saying no matter what. These are very frustrating and depressing days and can throw you into a loop.

During the pandemic and even today in some places, there was masking all around & plastic barriers made it hard to hear for most humans but for those with hearing loss made it absolutely impossible, add to that the ability to read lips was gone as well and sometimes even the ability to read the facial expression was gone.

These days medical facilities still require a mask. I always make a point to tell the reception that I am hard of hearing and if they can make sure to let the people who will call me to either say my name louder or to approach me when it’s my appointment time. A lot of people are nice and say yes, sure. But when it comes to actuality, they all forget. 

The weirdest place I had that issue was at the ENT/Audiologist office. You would think that in these surroundings they will be more accommodating or understanding. But no! Music was loud on the TV in the waiting room, no closed captions and receptionists with shields who talk to the computer instead of lifting their heads when they speak to you.

Who needs to adapt? The customer service industry or the hearing impaired person? For the hearing impaired there is not much adaptation, it’s not like you can wake up one morning and decide today I shall hear. Even with my very expensive aids, there are times that I have no clue what someone is saying and I am not going to hide under a rock just because I can’t hear anything.

Customer service industry needs to adapt and workplaces need more training on how to intercat and integrate people who have disabilities as they are part of society.  Talking to people while facing them and not staring at your phone or computer should be taught early, this is a social skill that is important in any situation. If anyone asks you to repeat a sentence, repeat it and do not say “ oh, it doesn’t matter”.

Being hearing impaired is not a choice, being a kind courteous person is!

Hearing Aid Costs

I am in the market for a new hearing aid. There is nothing wrong with my current one, I have a top of the line one with bluetooth and some other settings that I never use. I am in the market because there is one big issue with hearing aids – they are not water or sweat proof.

Moisture is not a friend to those of us with hearing aids, moisture of any kind is the enemy, it sucks the battery life and we need to make sure to dry out the aids if they get wet. 

If you want to go swimming, boating or walk in the rain that’s a problem, not only that everytime i get in the shower I immediately touch my ears to make sure I have not forgotten to take them out.

Finally one company created a new aid that is waterproof and that’s what  I am shopping for. As there is only one company that has them you probably ask what’s there to shop for, it’s not like i have other options. And here lies my conundrum, my insurance covers aids. I am lucky as most companies do not, however the amount that they cover is not enough for the top of the line model so i have to compromise and choose a lesser quality level. I am lucky that not only do I have some insurance coverage I can also cover the difference between the insurance and the actual cost of the device. But what happens to those who do not have any coverage but can not cover the difference or any device at all. 

Why are those with hearing loss expected to function without aid? Losing your hearing is not only a function of age, many in my support group are young productive adults who have many years ahead of them. Hearing aids do not last forever, they deteriorate and need replacing every couple of years.

Hearing aids are expensive, good hearing aids are very expensive. Insurance coverage is questionable, some do not cover any cost and some cover a little. Most insurance companies cover only a fraction of the true cost. Last week over the counter hearing aids were approved, however hearing aids are not reading glasses, there is no one size fits most. We all have different needs and different settings and one ear is not like the other ear. So even though it is good that they are available over the counter this is a solution only for those who have minimal hearing loss and not for those with moderate to severe hearing loss.

Losing your hearing is not only a function of age, many in my support group are young productive adults who have many years ahead of them. Hearing aids do not last forever, they deteriorate and need replacing every couple of years.

Being a productive citizen and contributing to society is important, having a job is important, being able to participate in everyday life is important, and the ability to hear is a big and integral part of this. Those with hearing loss like me want to have the freedom to choose our professions or to interact with society and the ability to have a good quality hearing aid is an integral part of this. Approving over the counter hearing aids is one step but not the answer. Lowering prices of the aids,encouraging research, competition, creating more companies  &  requiring insurance to cover them is the answer.Why are those with hearing loss expected to function without aid?