Pain

I once saw a movie called the The Diving Bell and the Butterfly. It was about a man who became a quadriplegic and learned how to communicate using a series of blinks . In that limited capacity, he wrote a book about this experience as a quadriplegic. Imagine writing an entire book using only a series of blinks.

While I have both the use of modern technology and full use of my body, I feel at times I am blinking my way through this book. It is my goal to leave this as a testimony of what happened to me, but mostly to find meaning in my own suffering.

“Pain is a greedy bastard. Pain robs you of everything you care about.”

Robyn Segal

Chapter 1: Breathe

I can not breathe. I gulp for air but it’s never enough.

I look out my bedroom window and know I have lost this battle. More importantly, I realize I can’t fix this by myself.

I go through my options, option A, wake my sleeping wife and tell her I need to go to the emergency room. I hate to wake her if for no other reason, she is truly horrible to be with if she doesn’t get enough sleep. It would end up being a double punishment for me, first the hospital then my miserable wife.

I move on to plan B. Say nothing and wait till Monday when I can make an appointment and see my primary care person. I consider the perils of waiting and worry that I’ll end up in the ER anyway. Moving on; plan C; there is some promise. I wait until morning and go straight to the urgent care when they open. I think I can do that, I say to myself and prop up my pillows and fall back asleep.

When my wife wakes at 7:30am, I tell her my plan and she agrees with it. We wait til 8:30am and leave for the urgent care 5 minutes from the house.

We arrive to find an empty parking lot which is exactly what I want. No waiting like in the ER.

We wait inside the warm car until we see another car move into the parking lot. We approach the door and are happy to find it open. That,is the only good thing that happens for the rest of the day.

We are taken into an exam room relatively quickly. A young handsome boyish looking man enters the exam room soon after us and as is typical, my wife has to ask his age, then I hear something about Doogie Houser, all the while I struggle for each breath.

The doctor wants x-rays. It’s just down the hall but it feels like miles to me.

”Breathe normally,” says the voice behind the wall.”

“Now hold your breath.” Says the girl through the speaker.

I do.

Chapter 2: Worst taste Ever

My mouth is so dry . When I wake in the morning, I can’t get to the bathroom fast enough to get a drink of water. Even as the cool water fills my mouth and slides down my throat, it seems to evaporate almost immediately.

I’m so thirsty that I break my own rule; never drink water from the bathroom faucet. There I am though, head in the sink, mouth at the faucet, slurping slurping, as if the water might run out. Then, when I feel full, nearly bloated. I lift my head from the faucet and catch a glimpse of myself in the bathroom mirror. Cringe, I think to myself. And still I want to take another peek. I am unrecognizable. My wet hair hanging in my face, my eyes, dulled from lack of sleep. I straighten out my half wet tee-shirt, turn to leave , but the desperation returns as does my head to the sink, my mouth to the faucet, drink, drink, dry dry, dry.

I call the dentist, I need to be seen, I tell the voice at the other end of the phone.

“I have dry mouth.” I start to explain but she only wants a number where I can be reached. “What about my tongue?” I want to ask her.

“Someone will get back to you.” She says. “Is there anything else I can help you with?” I still want to tell her about my tongue. I want to make sure she knows, my tongue has a little white dot where I bit it by mistake, I want to tell her so badly, that she might ask if I can hold a moment while she gets the dentist. Instead, Click!

I think to myself, why can’t she be a little nicer, more curious about my terrible dry mouth. She didn’t even ask me about my funky tongue.

I have no choice but to move on.

Every morning is the same. Dry dry dry . I brush my teeth vigorously as if I can some how brush away the problem.

Then I awaken one day. Morning gives way to afternoon, then afternoon to evening and I have spent the whole day sucking sugar free mints and gently chewing stick after stick of sugar free gum. Dry, dry dry.

It’s not long after that I awaken to the worst taste in my mouth. The worst taste ever. Bitter, metallic, medicinal. I brush,rinse, floss, then wait. Within 5 minutes the awful taste is back. I retreat to my stash of gum and mints and notice that the gum and the mints do help slightly as I proceed to chew stick after stick until the pack is gone.

The dentist calls back. Well actually it’s his receptionist. “My mouth is dry and now I have a bitter, metallic taste as well.” I tell her. She says the dentist can see me next week.

“Is there anything sooner, this is kind of urgent” I say in my best lay back voice.

Can you come in today at 3:00pm

“Yes yes I’ll be there. Click.

“Have you changed or started a new medication? “ asks the Hygenist. Then she goes down her list of possible causes. I say no to everything. Then she asks if I smoke.

“I smoke pot, “I tell her, then remember to add, “I have a marijuana medical card” just so she doesn’t think I’m a drug addict.

Then, as if to confirm that I am a drug addict, she moves her face within inches of mine and whispers “Do you smoke the marijuana?

“I vape it mostly.” I tell her.

Then, in a voice so low that I can barely hear the Hygenist, she asks. “How often do you use the marijuana?”

I whisper back, , “A few nights a week before bed. “

So I fail to mention also during the day, at the beach, whenever my mother visits and whenever anyone passes the joint my way.

The Hygienist makes her exit and returns with the dentist.

Now she is whispering to him about me smoking marijuana. The word just doesn’t sound natural in her mouth. It’s as if she never said the word in public. She doesn’t quite pronounce the it right

Then, as if they have made some great discovery, they both whisper to me that I need to stop smoking the marijuana immediately as it is the only cause of all that ails my terrible dry mouth.

Reassuringly, the dentist again recommends I rinse with Biotine and sends me off.

Then, almost as an after thought, the dentist turns to me and sticks his gloved finger in my mouth and announces Not that dry..

I leave dejected but not defeated.

That is until despite my neurotic rinsing with Biotene, the taste in my mouth gets worse. It feels like I’m walking around with dirty socks in my mouth.

After reading about metallic taste in mouth I discover a small article on google linking reflux and GERD with metallic taste.

I call the Gastroenterologist the next day and make an impassioned plea to be seen right away. I use the word emergency, something I am loath to do but alas it works and they can see me in a few days.

I feel so confident that I have found the answer. So much so that I’m overcome with relief, nearly happy to have reflux. Almost thrilled..

I arrive at the appointment armed with all my research and upon seeing the doctor, I tell him my theory. I am aware that I have no gastro symptoms nor heartburn not ever, but still, I am hopeful. More then hopeful, I am certain.

After a lengthy description of my mouth, tongue and texture of my saliva, the doctor gives his full attention to me. My little one man audience and best of all, he believes me.

He tells me that Judy, on his staff, will make me an appointment for an upper GI series. Sure I am reluctant to drink whatever awful cocktail I have to drink to do the test, still, if that is the price I have to pay to get my mouth back, then so be it.

I arrive at the hospital alone and very early. I am nervous but so eager to get my old saliva back, any saliva really, that I sit in my car for a few minutes and pray. I pray that things will be ok, that things go my way.

Not knowing anything about praying in any sort of official capacity, I say the only prayer I know by heart, the prayer from Alcoholics Anonymous Big Book, Chaper 3..

God, I offer myself to Thee—to build with me and to do with me as Thou wilt. Relieve me of the bondage of self, that I may better do Thy will. Take away my difficulties, that victory over them may bear witness to those I would help of Thy Power, Thy Love, and Thy Way of life . May I do thy will always.

Had I not been so nervous, I might have put a little more forthought into my prayer. But this is what came to me at my time of need so it would have to do.

Once inside the hospital, I find the outpatient registration, sign in and wait for my name to be called. I take a piece of gum out of my pocket and begin to chew. I have started to notice how little the flavor lasts in just one piece of gum.. It happens intuitively . I am chewing the very expensive chiclet style gum, made specifically for dry mouth. At six bucks for a pack of 10 pieces, I expected the flavor to last but I am chewing through whole packs in just over an hour.

Finally, I hear my name called. Bravely, I go in alone. Someone hands me a cup of room temperature contrast to drink for the test. The radiologist is kind and apologizes that the drink isn’t cold. All I can think is that they knew I was coming, yet no one had the forethought to put the can in the refrigerator?

I swallow a couple of gulps and the radiologist takes a picture, then, as if I have expressed some curiosity about the test, the radiologist turns the screen he’s watching so I can see. I have no idea what I’m looking at. I nod as he explains

I don’t even know what I’m nodding yes to but the results are clear, I need a different test. This one does not reveal any problem.

I am down right disappointed by the results. I was so prepared to have reflux. My whole life style screamed reflux, the processed foods, the late night eating. I was nearly a poster child for reflux.

I drive home, me, my bitter taste, dry mouth and pasty saliva..

“So Dr,Flock wants you scheduled for an endoscopy. “

Says the pleasant voice through the phone..

Under any normal conditions, this would be very bad news for me, the kind of thing that I might not follow up with, maybe just never go back to the doctor, pray whatever is wrong will miraculously disappear, but no, I’m so desperate to get my mouth back.

The receptionist gives me an appointment.

I soon realize that I have to wait two weeks to get the endoscopy. That’s two more weeks of pain and always dry mouth. I call the scheduler and say that this is an emergency, there I am using that word again. I’m embarrassed to even say emergency. I try to save that word for extreme situations but that’s how this feels.

Unbelievably, the scheduler finds me another appointment much sooner but I have to fast for the test and as always the case, the diabetes, that I have since I’m 11years old, makes it impossible to take the late day appointment . Then, after a brief hold she comes back with an early morning appointment, “I’ll take it” I say, I’m so proud of advocating for myself that i’m nearly giddy.

As the day approaches, I am soon reminded about things like anesthesia and the tube down my throat. Still desperate to get my mouth back, I proceed anyway.

“No food or drink for 6 hours prior to the procedure.” Says the woman from the hospital, the night before the endoscopy . I agree but soon find myself worrying about how I’ll survive no drinking for 6 hours. I live on water, gum, mints, now all forbidden.

Undeterred, I wake up at 2am for my last drink before the test. I stick a xylimelt on the roof of my mouth and hope it lasts long enough to get through this procedure.

I discover at the hospital that the directions I have been given about drinking before the procedure is wrong and I can drink water whenever I want.

No big deal. for them.

I awaken from the test with my doctor at my bedside.

His good news is that there is no reflux. My bad news is there’s no reflux.

I take myself, along with dry mouth, bitter taste, and, my weird paste like saliva and go home.

Where to go next, what to do. I feel like I’m on my own and it is scary.

Working it Out

It’s been 5 months since I started this sadistic ritual. It’s 7:00am and after taking a piss, brushing my teeth, and getting dressed, I’m out the door. It’s barely a 5 minute drive but I leave early. I never say it out loud but I have an ongoing fear that at any moment I will turn around, find some excuse and never go again.

The gym has been my friend and my enemy. I have this sense that everyone there, including my training couch must think to themselves

“She is in the worst shape I’ve ever seen.” I feel their eyes following me as I pant and sweat my way through the series of exercises given to me by my coach. He remains encouraging, even kind but no matter what they think, it’s not a pretty picture. With every new exercise comes the self doubt that I can’t complete the task.

In the beginning, I would gaze out the window wondering how I would make it to my car, still worse yet, how wilI get back into my house once home. I would rest in the car for several minutes before attempting to walk up the walkway through the front door.

I never made it further than the living room when I did make it in the house. I threw myself into the closest chair in the room. It was more like a flop and then I would pant till I could catch my breath. I would have preferred to sprawl out on my bed but there was a short staircase in the way and it might as well have been a 5 story walk up.

The weeks flew by and it took a while but after some time, the walk to the car got easier, I was able to get into the house with less hardship and no longer needed to recover in the living room chair.

I never did get to a place of”workout confidence”, but the likelihood of canceling an appointment or worse quitting, lessened.

Then one day, maybe it was the surgical mask I was forced to wear while lugging my 20 pound weights back and forth around the room, maybe I was getting sick? That day I could not complete the assigned tasks. There was no treadmill, no pulling on the pulling thing, no sitting and standing and absolutely no cool down.

Half way through my work out, I turn to Leo, my overlord that day, and tell him I don’t feel well. Leo doesn’t seem to care so I grab my water bottle, rip off my mask and head for the car.

I have the most bitter, metallic taste in my mouth and even the water in my bottle tastes off.

I know something was terribly wrong inside my mouth. I assumed it would resolve in a week or so and I will resume my self inflicted torture.That was the last day I ever went to the gym.

Chapter Magic Mouthwash

Click, click, click on the keyboard and I type in all my symptoms. I scroll down the pages and read and read and read . I find hope in between the sentences, Sjogren’s Syndrome, Anemia, Thyroid, Lupus, blood pressure medication. All possibilities that can be treated, maybe cure even cure me, so that I can get rid of this horrible thing that has taken over my mouth.

I make appointments that lead me nowhere. All the lab work comes back negative. I change my blood pressure medication, no difference. I see an Ear Nose and Throat Specialist and seconds into the examination he declares

“You have Glossitis”

I am so happy I could kiss him. No, I don’t know what Glossitis is but he gives my condition a name and with that and a prescription for something called Magic MouthWash, I skip out the door but before I get too happy, he explains that the mouthwash is a compound and can only be ordered through a special pharmacy No, they are not open now, but if I’m willing to drive, I can get it tomorrow. Also, he says as an afterthought,

“Get a tongue scraper.”

It’s dark out when I leave his office, but inside my car I feel relief, hope.

Caught up in my moment, I stop at a pharmacy on the way home to buy a tongue scraper. I don’t even know what it looks like but I head down to the oral hygiene aisle and search through the rows of tooth floss and dental picks to no avail. Undeterred, I find a teenager behind the check out counter who has no idea what I’m asking for. He calls over to his co worker who is nearly on the other side of the store

“Tony, he yells past me, Do we got tongue scrapers?

I feel all eyes on me. I can hear their thoughts as I follow Tony to the back of the store.

“That’s the lady who needs a tongue scraper” I imagine them all thinking.

“What must her tongue be like?”

My determination pays off as Tony hands me the last tongue scraper at CVS.

Ninety nine cents later I’m cruising home armed with my tongue scraper in hand.

.

“What did he say” calls my wife from the bedroom as I come through the door

“Glossitis” I yell down the hall.

She comes to the kitchen and asks again.

“What did he say?” she asks

I repeat. Glossitis, magic mouthwash, tongue scraper. “He says I should notice a big improvement in 7 days.” I tell her.

Before she has a chance to pick up the prescription, I explain about the special pharmacy and that I’m going to pick it up tomorrow. What’s one more night if a cure is sitting on the shelf 30 minutes away at the special pharmacy? Right?

That night I google Glossitis . Disappointed but undeterred, it says Glossitis means literally a swollen tongue. I can’t really believe a swollen tongue could be causing the kind of symptoms I’m having. So dry, always dry.

I pick up the Magic Mouthwash the following afternoon. In the pharmacy parking lot, I slide my cure in a bottle out of the bag. The color of the rinse is pink and decide against smelling it.

Later, in the bathroom I face down my Nemesis, which looks awful and pour the thick liquid into the teaspoon provided. Without hesitating, I put the teaspoon in my mouth and slide the chunky mixture in. I rinse, counting the time down, my mind, a laser. Two minutes I tell myself, be a grown up, I tell myself, suck it up, I tell myself and then, like magic, the two minutes pass and I spit into the sink.

There is the faint taste of mint and again with my mouth to the faucet I rinse and rinse and spit and spit until the last little chunk of Magic Mouthwash is out of my mouth.

As I attempt to regain my composure, I take a moment to acknowledge what a grown up thing I have done.

I’m feeling a little proud of myself. Then I notice my tongue feels slightly numb. An indication, I’m sure, that I’m on the mend. The feeling lasts less than 15 minutes.

“So?” asks my mother on the phone,”What did the doctor say?”

“Glossitis” I tell her, “it means swollen tongue “

I tell her about the Magic MouthWash.

She asks me several questions but I have no answers. I was so happy with a diagnosis, any diagnosis, that I didn’t ask the doctor any questions.

I countdown the days for the mouthwash to do it’s magic.

When day 7 comes, I start getting a little discouraged. I wait another day before calling the doctor back.

I call. The doctor seems genuinely surprised that I’m still suffering, but not curious. Curious would take a few minutes to look up alternatives, curious would say , “Come back for a follow up appointment,.Curious would ask me how I was doing. He didn’t say I’m sorry. Not so much as a referral. He was breaking up with me but I didn’t know it at the time..

I ask him who he suggests I see next and his answer is almost like a question” Oral surgeon?”

Chapter 3: What Now

During those months that I was regularly working out, I notice my right shoulder begin to hurt. Not hurt as in “I can’t go to work today” More like an ache that I Imagined would resolve itself with exercise . Unfortunately the exercise part of my plan had come to a screeching vault.

I was spending all of my energy trying to find a solution for my mouth, thus my shoulder pain is on the back burner.

Chew

Dry like a desert. My tongue is starting to get stuck when I’m speaking which results in me biting my tongue all the time. My tongue no longer belongs to me. It’s like an intruder. It desperately searches for moisture where none exists

I have developed a nasty little habit of looking at my tongue in the mirror. Not all the time but certainly I’m good for twenty minutes in the morning, another 15, after breakfast,, everytime I go to the bathroom, and my favorite, the rear view window of my car.. What am I looking for? I don’t even know. I search my tongue looking for some clue as to why it hurts so much.

I look for any abnormalities that I might point to as the cause for my affliction. I look and look. I take pictures of it with my phone. No one wants to see photos of my tongue so I show them to my wife.

“See it, see it?” I ask her as I point to a small dot on the left side of my tongue.” “There” I point to the photo, but still she doesn’t see it. Then I insist that she look at my tongue and she agrees. A live audience. I’m thrilled.

“This?” she asks pointing to nothing in particular.

Yes, that’s it I exclaim with joy. I move on to show her the underside of my tongue but she has already lost interest.

The bitter metallic taste that stays with me all day now. It’s as if I rinsed my mouth with liquid plumber.

My saliva has returned for a “guest appearance “ however, it is thick like paste and comes and goes all day. The new saliva is awful. It pools in my mouth, compelling me to spit periodically throughout the day. I typically aim for the sink or trash can but, unlike the saliva I used to have, this sticky stuff often lands on my shirt or outside the garbage can. I find myself spitting in the street when taking a walk. I imagined my neighbors watching me spit from their windows, then looking away in disgust. I am a spitter.

I Biotene my mouth several times a day to no avail. I discover that chewing gum and sugar free candy helps make saliva. I try every sugar free gum in the market. My backpack is filled with Act gum which promises long lasting flavor and moisture for my poor dry mouth.

Their promise is short lived. I quickly chew through the 10 pieces in the pack.

From there, I move on to butterscotch discs, and switch off between those and lemon drops which sounds a lot better then it is. The lemon drops are too sweet as are most of the sugar free candies in their effort to taste like real candy.

I switch to mints. They all have a funky flavor or I might be losing my sense of taste.

Then one night my wife finds something on-line made specifically for dry mouth. “That’s me, that’s me.” I say as she reads the reviews aloud

“.How much is it?” I ask my wife.

“It doesn’t matter” she says

She considers my problem her problem too and is always looking for anything that might help my miserable mouth.

I choose from several products and land on one that sounds like just the what I need, All Day Saliva.

I wait for the Amazon truck to drop off my package. When it arrives, I examine the small spray bottle and am slightly disappointed when it says I can use it up to 3-4 times a day. I read the directions. I guess that’s what “all day” means.

Still I add it to my backpack filled with mints, gum and candy. I spray my mouth when my jaw tires of chewing

Same weird minty taste. It tastes awful.

The oral hygiene aisle at the store, becomes a kind of candy store to a diabetic. Every product is calling out to me

“Buy me, buy me” as my eyes move slowly and efficiently from product to product..

Today I treat myself to a children’s mouthwash, ironically, bubble gum flavor and a mouth guard which I later ruin in the microwave before even giving it a try.

I try green tea gum. Ironically the flavor lasts quite a while but the flavor is gum feels like it’s burning my mouth.

I try a spray called Salivation. It sounds like in addition to providing my mouth with saliva, it also offers my soul a little salvation. Kind of like those shampoo with Conditioner all in one bottle.

As my supply of Orbit’s Bubble Gum starts to run low, my wife offers to pick up some more gum for me. Now a medical necessity, I send her a text with the name, flavor, and exactly what the packaging looks like so she knows what to buy. Instead she comes home with Trident Ice, a gum that boasts it has flavor crystals for long lasting flavor.

The gum taste terrible. So much for flavor crystals.

I see an on-line a pop up ad for sugar free Dubble Bubble Bubble Gum

I buy two bags

When it arrives, it’s like Manna From Heaven.

So good is the quality of this gum, it’s like soft, little pillows of sweetness for my raw mouth. Each piece comes individually wrapped and has this weird dusty taste that I can’t quite identify but like.

Each piece is large. Larger in size then any of the other gums I’ve chewed, and the flavor, well the flavor last seemingly forever, yet I manage to go through the two bags I bought in less then a week.

I order a case next time and am grateful when Amazon delivers the box by 10pm

All over my bedroom are the little yellow wrappers that keep the gum so soft and fresh. They are in the bed, on the bedroom floor, in every pocket, my backpack, the kitchen and my desk at work.

My car is even worse. Under every seat, on the floor, in the trunk, on the passenger’s side, on the drivers side, are little yellow wrappers that once contained my delicious Double Bubble Bubble Gum.

Then one afternoon, while I was furiously chewing away, I lose a tooth. It falls onto my tongue and I run my ravaged tongue over the place where my tooth used to be. Yep, I tell myself. You are screwed!

I call the dentist, the one who keeps recommending Biotene, and tell the receptionist that I lost a tooth. She gives me an appointment for later in the week but it soon becomes evident as the day moves on, that this can’t wait. My poor tongue keeps scraping against the jagged edge where my tooth used to be.

I call the dentist office back and tell the receptionist that this is an emergency, yes I used that word again. She squeezes me in the following morning.

“How did this happen?” asks the dentist.

“ I was chewing gum.” I say with a note of shame.

“Well you shouldn’t be chewing gum.” He says, “That’s why this happened.”

I remind him about my mouth situation to which he replies, “Well I wouldn’t chew gum if I were you.”

As a temporary fix he glues my tooth back into my head and cautions me not to eat on the opposite side, indefinitely.

I realize, having no choice, I must adapt. No more gum.

It takes less then 24 hours for me to break down and start chewing. The gum has become a medical necessity, one I fear I can not live without. At first I took the tiniest piece of an Orbits chicklet and gently chewed it on the farthest reaches of the left side of my mouth. Occasionally the piece of gum is so small that it gets caught in between my teeth and I have to use a dental pick, like a surgeon, with precision handling to extract the gum from my mouth.

Soon I was taking bigger pieces of chicklets and then finally, in a moment of desperation, I tear open a new bag of Dubble Bubble Bubblegum. I rip open the little yellow packet with my teeth no less and clamp down on that artificially flavored sweetness. My whole mouth is rewarded. I promise myself to only chew very gently and only on my left side.and only on special occasions. It’s not long before I’m popping two, even three pieces at a time, blowing big bubbles and chewing that gum like a cow chews cud.

I am in constant worry that I will break a tooth or unglued the one the dentist glued in.

I go back to old solutions.

Chapter 4: Spit Responsibly

I read that I should avoid toothpaste that contains a chemical known as Sodium Lauryl Sulfate or SLS. I’m not sure why SLS is no good for me but in desperation, I now possess a willingness to try almost anything to make my mouth better.

My regular toothpaste works fine but as long as I’m in the Oral Hygiene aisle I decide to take a look.

I start out reading the ingredients on the back of the toothpaste boxes and sure enough SLS is in all the commercial brands. I shuffle down a little to the higher end toothpastes and I see, no SLS. I look at the artwork on the tubes and pick something mid range in price.

I throw in a couple of bags of Werthers Sugar free hard candies , a pack of biotene oranges and cream lozenges and head for the register.

When I get home, I line up my booty in the bathroom on the counter. There it stays, like a collection display as if the public is planning a museum trip to my bathroom.

I can imagine the docent clustering his small group of oral hygiene tourists into my bathroom

“On this side of the sink we have toothpaste with SLS” now if you move to the other side of the sink, you will see our collection of useless saliva replacement products.”

Within a few weeks, the taste of mint starts to burn my tongue. I can’t believe it at first, but a couple of swashes of Hydro Rinse later and my mouth is ablaze.

Again, my mouth, right at the bathroom faucet. Spit,spit,spit, swallow, breathe.

Another trip to CVS. This time, I spy Orajel rinse made especially for mouth sores. My mouth feels sore all the time, and yet I know it won’t help my sore mouth. Still it’s novel and I buy it. Then on to the toothpaste.

I browse the all natural brands of which several are unflavored. I can’t imagine what they taste like but I’m so tired of putting horrible tasting things in my mouth, so I move on to the Charcoal Toothpaste. There are three tubes and they are all black. Each boasts the benefits of Charcoal Toothpaste. I choose one with a happy little name, HELLO.

I promise not to peek but I am dying to see, really to make sure that the tooth paste itself is in fact white.

Instead, I place the tube in my personal museum of oral hygiene .

The following morning I wake to my usual terribly dry mouth and after hitting the toilet I turn to the bathroom sink. For just a moment, I take in the assortment of toothpastes and mouthwashes before reaching for the black tube. It boasts Fluoride and coconut oil and with that I twist off the cap and out squirts what could only be described as black paint.

That’s what it looked like anyway.

Reluctantly, I put a small smidge of the black paint onto my electric toothbrush, close my eyes, hit the power button

and begin to gently brush my teeth for a full two minutes before finally spitting into the sink. My spit is undeniably black. I rush to my favorite bathroom faucet, swallow, spit, rinse, then I make the mistake of looking up at the bathroom mirror. My hair eschewed, my eyes still swollen from sleep and much to my horror, black drool running down my chin.

I stick my head back in the sink and spit, spit, spit. I look up, still black drool running down my chin. Additionally, as I lift my head, I see the whole sink is covered with black . It’s even on the counter. I grab a towel off the rack and try to wipe out the sink. I spot some black flecks on my cheek and wipe the black flecks off with the towel. Now I’m upset because I’m ruining the towel. My eyes scan every surface for black paste.-

Finally I retrieved a sponge from the kitchen and wipe down everything in the bathroom.

As I am cleaning up, I pick up the box that the black paint toothpaste came in. Under the directions, the box reminds the user, “Spit Responsibly”

Chapter 5: No Cure

I am shocked. Few people have ever heard of Burning Mouth Syndrome. Few people include the 9 doctors and two dentists I seek out for consultation. Thus I diagnose myself.

The google machine tells me it is a rare Syndrome. When I look for research there is little done. The studies I do find are either inconclusive or have poor outcomes.

I find abstracts on Pubmed, read until my eyes cross.

I read about Klonopin, a front line drug for nerve pain.. I assume this is nerve pain .Not even the Neurologist I am seeing thinks it’s nerve pain.

I go to a new primary care doctor. She doesn’t know anything about Burning Mouth Syndrome. On my first visit, the doctor, fails to introduce herself. The first 30 minutes of the visit, I assume she is a medical assistant. I don’t even know how to pronounce her name, it’s got too many consonants. I ask her if she can recommend anyone but she doesn’t know anyone who has heard of Burning Mouth Syndrome. She asks what my dentist said. I feel so frustrated but manage to get a prescription for Gabapentin, another medication used to treat nerve pain. She hands me a lab slip. I don’t even look at it. I already know whatever is on that lab slip will not help my poor mouth.

I get the lab work done and within a few days the doctor calls. She calls to tell me that I have to go for an abdominal ultrasound. I ask why but her accent is thick and I don’t understand.

“A what?” I ask two times but all I can make out is the word ultrasound.”What about my mouth?” I ask, desperate for an answer. .

Although I understand little of what she is saying, I ask for a prescription for a medication called Evoxac, known to help your body make saliva.

She reluctantly sends in a 30 day script to the pharmacy. I say reluctantly because she is much more interested in discussing my liver then my mouth. I ask her

“Is that why my mouth is on fire?”

She doesn’t even answer me.

My mouth hurts so much that while I would normally be alarmed at the news that something is potentially wrong with my liver, now, I don’t even care.

I finish the call with my doctor, make a mental note to put my liver in the back of my mind.

I ask the doctor if we can test for zinc and vitamin B insufficiency which she reluctantly agrees to.

10 days pass and no news from the doctor. I call the office and am told I need to make a Telemedicine appointment to get my results. Though disappointed, really agitated, I make the telemedicine appointment for the following day at the agreed upon time.

The following day I sneak out to my car at noon from work and wait for the doctor’s call. I feel conspicuous sitting in my car in the parking lot. I look down as co-workers come and go.

Finally I lose my patience and call the doctor’s office. I’m told that the doctor is at lunch and never calls patients at this time.

I hear the pitch of my voice getting higher and the volume getting louder.

“You gave me this time yesterday?” I scream into the phone. “

“I” she emphasizes, did nothing. “

“Well you do work at the office, don’t know?” I ask.

“These calls are forwarded from our call center, and then they contact our office”. She says

I look at the phone for a brief moment and think of smashing it on the ground

Then think better of it. Instead I ask what I have to do to get my test results and again I am told that I have to make a telemedicine appointment. Through gritted teeth, I ask“ “When can I get an appointment to get my test results ?”

I feel myself becoming unhinged in my car in the Senior Center parting lot. All of my fear and frustration from the last 4 months are headed directly towards this customer service representative. Instead, I refused to make another appointment. Instead, I leave a brief but hostile message for the doctor whose name I can’t pronounce .

The only other time I speak to the doctor is to ask her to refill the prescription for Evoxac. She had only given me a four week supply and the literature states, it should be taken for at least six weeks to get full effect.

I call the office and leave my prescription renewal request with the receptionist at the call center. They have no portal and do not use the commonly popular My Chart. The following week, the doctor whose name I still can’t pronounce, tells me that she won’t prescribe the only thing that might fix my chronic dry like a desert tongue. She tells me this medication has too many side effects. Then before I could interject a thought, she asks me who was prescribing this medication.

“You,” I scream into the phone, “it was you!”

I could have said more. I had so many thoughts going through my mind. I heard the nameless doctor say something about my liver again but I had already fired her in my mind. I hung up the phone while she was still talking.

Chapter 6: Bad Ideas

I continue to look online for anything I can read on Burning Mouth Syndrome. Then one of my searches leads me to a Facebook group called Burning Mouth Syndrome Warriors. I see there are several Burning Mouth Groups but I like the idea of being a warrior so I join this group..

I start to check my phone several times a day, for posts with information which is freely shared within the group.

The posts often proclaim miracles. A miracle being something that the person has done or not done, eaten, not eaten, changed or not changed something that lead to a cure, typically in a matter of a day or two.

As it turns out, the Warriors are suffering terribly. I read post after post of people describing their condition as horrible, miserable, dreadful, unendurable.

That’s me I think. I am among friends.

I become addicted to the group, looking for any clue that will help my situation.

I ask for suggestions about everything. I read that a woman was cured by adding alkaline to her water, so I buy alkaline drops to put in my water, 10 drops per 8 ounces of water.

Someone suggests a rinse to get rid of the metallic taste and there I am buying Metaquil, a rinse that promises to eradicate the bitter, rancid taste in my mouth.

The rinse however smells like wet paint and tastes like it too. I force myself to rinse with it. One try and I spit it out.

As it turns out, I can’t use the rinse anyway as I am removing citric acid from my diet. One of the “Warriors” posted that they stopped eating products with citric acid and four days later, they were completely cured.

I discover that citric acid is in my favorite food, popsicles, the only thing that calms my mouth.

I abstain from the citric acid which, I discover, is in everything. That lasts 4 days.

No cure!

Then someone tells the group that no, we don’t have Burning Mouth Syndrome. Instead, we all have Tension Miositis Syndrome. Read John Sarno’s book they

insist.

I Google John Sarno and just below his name is the word psychosomatic .

One post asks the group if anyone has hair growing on their tongue. This post includes a photo of their tongue. The photo is horrifying; It shows a tongue with black hair growing out of it. Not just a little but nearly enough to make a pony tail

Hairy Tongue Syndrome makes me appreciate my own situation a little more.

Tongues. I have seen hundreds of pictures of tongues. Tongues with pimples, thrush and my favorite, the Geographic tongue.

Most of the photos however, are just normal pink tongues. All tongues that need a little attention.

I start using plastic silverware and even say goodbye to my favorite water bottle as it is made of metal.

Someone proclaims they have full remission from putting baking soda directly on their tongue.

Later that day , I slip the tip of my tongue into a small cup of baking soda. My tongue quickly becomes unhappy and starts to rebel. . All I can taste is salt. I rinse with water which makes the whole thing feel like I’m rinsing my mouth with water from a local beach. No amount of rinsing my mouth gets rid of the saltwater taste. Bad idea!

I come to recognize that the suffering among the Warriors is so great that people who find relief quickly post their miracle. As there is no known cure, any relief feels like a miracle. My mouth has sores and my tongue feels like it was hit by a car. No miracle for me today

I read the new posts as one might read the morning newspaper.

Someone posts “I am sure I have thrush but I have no physical symptoms.” She includes a picture of her pink tongue.

“I think I have mouth cancer.” posts one man. Then, as if disappointed adds, “but I have none of the right symptoms.”

“Does anyone have blue lips?” Asks another

“Does anyone’s uvula stick to the back of their throat?” posts a woman from Australia

“Is anyone’s saliva thick and foamy?” Asks someone else.

“My doctor says Herpes Simplex causes nerve damage. Anyone have Herpes?

Several people in the group respond no.

I start reading about vitamin miracle cures and I try Zinc, Alpa Lipoic Acid, a probiotic, Vitamin B, then a different Vitamine B, then a different kind of Alpha Lipoic Acid.

I finally realize I’ll never have my miracle unless I know what I’m doing.

Chapter 6 Continued: The Road not Taken

I call a local naturopath recommended by a friend. I call in advance and ask if anyone there ever treated Burning Mouth Syndrome. The receptionist gets a pen and I spell out each word and have the receptionist read it back to me

“Burning Man Syndrome?.” She says into the phone. “No,” I tell her. “It’s Burning Mouth,” Mouth I repeat.

“Then, to make sure I’m not wasting my time, I add,

“I only want to see someone who has some experience with Burning Mouth Syndrome.”

“No problem,” says the receptionist. She doesn’t know what I’m talking about. I’m sure she thinks it’s just a little dry mouth and a couple of thousand dollars later,

I’ll be walking off with my bag of supplements, cured!

A week passes before anyone returns my call. “Hi, this is Maria from The Family Healthy Living Center.”

She continues “ you have an appointment with Nicole next Tuesday at 4pm.”

I feel jubilant. Finally, I’m going to see someone who knows what going on in my mouth.

I count the days down till the appointment.They text me a confirmation, later they call to confirm and finally I get an email. I feel certain they can help, what with all their confirming and what not..

The afternoon arrives and my wife meets me in the waiting room. I glance at the fish tank and notice it needs to be cleaned. As I glance around further, I notice the waiting room is a little dingy.

They soon call my name and the receptionist introduces me to Nicole, my clinician, or from the looks of her, my baby sitter. She looked about 13 years old.

We follow her to her office and took our seats.

I review the events that transpired over the last few months. She keeps nodding her head like she already knows everything I am going to say, however she doesn’t know that type one diabetics take insulin, slightly disappointing. We then review the vitamins and supplements and this was the reason I didn’t want to go there in the first place. I felt her winding up for the pitch. Somehow, despite no medical doctor suggesting otherwise, she tells me that I will need several supplements, sure it is expensive, but aren’t I worth it? She might even offer me a payment plan to buy all those wonderful supplements.

Instead she surprised me by making a few small adjustments and even suggests I can buy the supplements on Amazon.

I make myself a follow up appointment for a month from then. We leave in high spirits. Though she is young. She is pleasant enough.

I start taking vitamins and supplements. With each swallow, I can taste the awful aftertaste of the vitamins and supplements.

I start taking Tums with them as all the vitamins give me heartburn. I feel like I am taking fists full of pills and as the days pass I wait for my miracle. So enthusiastic in the beginning, my hopes start ti mi dwindle. The rancid taste in my mouth continues and the burning never ceases. Still I wait for my miracle..

I make a decision to embrace alternative medicine . Part of me is afraid that if I don’t believe in the supplements, they won’t work for me. So, even though I force myself to believe the probiotic I am taking is going to work, I contact a chiropractor.

I am ready to pile on the cure.

I read about this nerve that connects the back of the mouth to the rest of the body andand despite my very limited understanding of anatomy, I feel certain I am on to something. I go to the chiropractors office, confident that as equals, the chiropractor and I are going to hypothesize my theory come out with a cure, The Cure..

I arrive on time to an empty waiting room. I submit my insurance card and drivers licence to prove that I am who I am. Once that’s established, They call me in to meet the chiropractor.

She asks me what my problem is and I can tell by the look on her face that she has no idea what I’m talking about. The more I talk, the more disinterested she appears.

I am just about to finish my Burning Mouth Syndrome Oral dissertation when the chiropractor interrupts me to say that what I am describing is not considered chiropractics. I’m not quite sure if she means that she doesn’t practice that way or no chiropractors practice that way.

Even as I walk out the door, I still think she is wrong. It is only 3 months later that I see her face on an ad for her practice on a Shoprite shopping cart. I think to myself, she is right where she belongs.

The acupuncturist takes a little more convincing before I am ready to take the leap.

My brother is certain that I need to see a Chinese Herbalist to perform the acupuncture. As he calls me every morning to see how I am, it seems wrong to reject his first big idea. Worse still, he found me an authentic Chinese Herbalist right in my own neighborhood, and what’s more, he spoke to the authentic Chinese Herbalist.

“ I know about Burning Mouth Syndrome. I have treated many people” she says in a thick accent during my hour and a half intake via FaceTime.

She charges me 150.00 dollars and I’m agitated by the cost but still desperate enough to pay.

The FaceTime appointment is thorough and by the time we are done, I have a good sense about the acupuncturist. Although at times, difficult to understand, I am uncomfortable asking her to repeat herself again and again so I end the call with most of my questions unanswered

My mom is in town. My first appointment with the acupuncturist is this afternoon and I am nervous. I don’t know what to expect and while I may not need it, I ask my mother to come for moral support.

While I check in, my mother takes a seat and reads a magazine. I am led into a tiny exam room right off the waiting room. The acupuncturist rushes in and tells me to take off all my clothes except my underwear. The acupuncturist doesn’t possess any of the niceties that I’m accustomed to. She speaks in short commands

“You take off clothes, you lie down here.”

Then she disappears.

This doesn’t leave a lot of room for discussion. I with her commands but I feel like the people in the waiting room can see me. I’m afraid my mother can see me sitting on the exam table in my purple underwear and blue bra. I imagine her telling me after the visit

“You need new underwear. How can you walk around in purple underwear?”

I will tell her it was a 10 pack of panties. I didn’t get to choose the color. She won’t care. She’ll offer to take me to Kohls to get a new bra. I will politely refuse.

The acupuncturist returns to the exam room and has me lay down in only my underwear on a paper sheet on the exam table. I’m surprised at how cold I am.

I want to say something but the acupuncturist is talking and I have to listen very carefully to understand what she is saying. I see the needles out of the corner of my eye. I’ve seen enough to know, I need to close my eyes. I’m imagining I’m on a beach, in my bed, on vacation, anywhere but where I am.

The needles hurt a little but no more than I expected..

She says something else that I can’t quite make out, and then she leaves me alone in the tiny exam room. I can’t say for sure, but I am almost certain that my mother and all the other people in the waiting room are getting a good look at me and my purple panties and blue bra laying there freezing cold with all these needles poking out of me.

I listen to the music coming from a speaker somewhere in the room. My mind wonders as I try to ignore the needles, the cold and the growing feeling that she left the door open.

At some point she comes in to check on me and asks if I’m cold.

“Yes, in fact I’m freezing.” I say, to emphasize my discomfort

As I’m laying flat on my back, and I dare not move with all these needles in me, I can make out the distinct sound of paper tearing, then this strange feeling of paper covering my body. I imagine I look like a birthday cake with toothpicks under the cellophane to keep the frosting from smearing.

So there I am, laying half naked, with needles stuck everywhere in my body, under a torn piece of paper, waiting, just waiting for this to be over.

The Chinese Herbalist Acupuncturist finally enters the room. I listen for the door behind her to close but I’m certain it’s still wide open. Barry, her assistant at the front desk is getting quite a show, along with my mother and the rest of the people in the waiting room.

I feel my paper blanket being pulled away and I shiver from the cold in the room. Then I feel her remove needle after needle till they are all gone.

I exhale. She asks me if I feel better. I can’t imagine the effects of the acupuncture are immediate. She directs me to get dressed and leaves the room.

When she returns, she has a little cup, about the size of a shot glass, half way filled with something that looks like granules of dirt

She points to the 1 ounce cup and says

“ You take ¼ teaspoon, good for tongue. I thank her but already know there is little to no chance of me trying this potion, with no name, no label, no FDA approval.

I turn to leave the room and as I’m making my next appointment, the Chinese, Herbalist Acupuncturist pulls me by my arm over to her little apothecary and takes out a container with Chinese writing on it, shows me it’s contents, that being around 2 tablespoons of the brownish granules. I thank her as she follows me to Barry’s desk and whispers something in his ear.

He then turns to me and gives me another appointment for next week, but not before charging me 4 dollars for the Chinese herbal medicine.

As we leave the office, container in hand, I shake it and can’t believe it. She charged me for the left over contents of her herbal remedy.

Weeks later, in a moment of terrible pain, I break down, find a ¼ teaspoon and pour the brownish crystals into the teaspoon and put it in my mouth as directed by the acupuncturist. I don’t know if I’m doing it right as there is no English writing or directions on the container.

What happens next could only be described as a dumpster fire. I rush past my wife to my favorite bathroom faucet. The water can’t come out fast enough. It’s coming out warm but there’s no time to let it cool down.

“Is there anything I can get you,” says my wife with her head near the sink.”

“Nothing.” I say between swallows and spitting.

I half scream, half cry.

“Help me.” but really my wife can’t get close enough to me to help and I can’t stop screaming from the burning pain.

Note to self: Don’t put strange things in my mouth.

I go two more times, because in the world of pain, everything takes a while to work, but after that first visit, my heart just wasn’t into it. I placed the container of the brownishish crystals on the bathroom counter along with all the other products that failed to live up to their promises in the. museum of Oral Hygiene.

Chapter 7: I’m a good listener

My psychiatrist, one of my few doctors that cares, willingly prescribes medications that are known to be helpful for my poor burning mouth. Unfortunately, none of them really work well and some not at all.

I become increasingly hopeless and recognize the danger of ignoring those feelings.

I decide to seek the help of a therapist. I believe however, that I should work with someone who deals with chronic pain. By now I know that no one knows what Burning Mouth Syndrome is but there is a lot written about chronic pain and I call the insurance company and ask for a referral to a therapist who works with chronic pain. The lifeless voice on the other end of the phone tells me they don’t have any therapists who do that kind of work. I don’t really believe her as I have read so much about this kind of therapy. So I repeat my request and the voice on the other end of the phone, sounds nearly annoyed.

“Miss, we don’t list our providers based on specialty.”

I find this hard to believe as every doctor I currently see is a specialist. I have little energy to argue so I ask for the name of a therapist, any therapist, and I write down their name and number on a dirty napkin I find on the floor of my car.

I call the number on the napkin. A woman picks up on the first ring and I try to explain, really, the unexplainable, that I am in pain, I have a rare syndrome that no one ever heard of and am hoping to find a therapist who can somehow help me learn to live with this pain. It’s really a ridiculous notion. I don’t want to learn how to live this miserable life in pain. I’m already living in pain. I’m still looking for a cure. I keep forgetting. No cure!

The woman on the phone is surprisingly empathetic. She shows genuine concern for my well being, something I had yet to experience during all these months of dry, burning, misery.

We speak on the phone for about 20 minutes. She says she can help me. She says she will discuss my case with the other therapists in the practice and get back to me soon. I give her my phone number, thank her and hang up.

Reassured that I at least found someone to help me with my growing anxiety, I remain optimistic the rest of the day.

Late in the afternoon, the woman calls me back. She says she is sorry but, no, she was not going to be able to help me. I can’t imagine why and she doesn’t say. I thank her and hang up. Another person breaking up with me and I never even got a first date. I do ask her if she can refer me to someone else and I suppose I should ask more specifically, for someone with my kind of problems.

I take the referral and immediately call the number she gives me. I discover that the referral is for a group called Concepts in Personal Growth. The woman I am speaking to asks me several questions and, just like the last therapist, promises that someone will get back to me soon.

I can’t believe I’m being vetted to see a therapist. I feel like I’m auditioning for America’s Got Talent.. My insurance is verified by the practice which gives me a free pass to the second auditions. It is then that I submit to a series of personal and really intrusive questions.

A week or so later, I receive a phone call Janis, the clinician that has been assigned to my case. This time I don’t get my hopes up. I keep an emotional distance from Janis,. She is overly friendly which already makes me suspicious of her.

We set up a date and time to meet.

I climb the stairs to a dingy little office on the second floor. The elevator is out of order.

I realize when I get to the second floor that I don’t remember the name of the practice or Janis’s last name. I wander around trying to look inconspicuous while searching for Janis’s office.

Only through a process of elimination having passed a podiatrist office, law offices, and a place called digestive experts, do I find Janis.

Her office door is open and she calls out to me to take a seat. “I’ll be there in a second.” She yells out through her open door.

She soon invites me into her office, apologizes for the mess and asks me questions. Really questions written in code

“Do I have thoughts that other people are talking about me?”

I want to scream “Just ask if I’m paranoid?”

But instead I simply say no.

“Do you ever wonder what’s the point in living?”

“Just ask me ”Am I suicidal?” I think, but instead I just say no.

Having worked with a skilled therapist many years ago, I’m somewhat taken aback by her slovenly appearance and unprofessional introduction.

As she takes a big stack of files off her chair, she looks up at me and says “Nice to meet you.”

Her thick glasses and unkempt hair are off putting.

She starts to extend her hand towards me to shake mine. I notice the chipped pink nail polish on her chubby hand and remember that hand shaking is a greeting of the past, since Covid 19. Instead I move my left elbow up, like I’m doing the Chicken Dance and offer her my elbow as a gesture of good will.

She nods towards me as if to say, I understand, and invites me to take the only open seat in the claustrophobic room, really, little more then a closet.

She proceeds to tell me about herself. She

Has worked at the local hospital for 17 years. This place, apparently is her side hustle since retiring from the hospital. I have this overwhelming feeling that she should have stopped working long ago. She’s for sure, no bright shines penny. Part of me thinks that she is all used up. Whatever clinical skills she once possessed appear to be long gone. Any sense of professional appearance has long since disappeared. I feel almost certain that what I’m observing in front of me in this dirty closet size office is all that is left of Janis.

She asks me a few questions about why I am there and seems genuinely horrified by my circumstances. She asks what I want help with and I explain that I am searching for a way to live with this chronic pain that is rotting me from the inside out.

She takes out one of her business cards. Before handing it to me, she explains that’s she giving me homework. She rights on the back of her business card; You are smart, you are good, you are important. She directs me to say it a few times a day in the mirror. I can’t believe it but she is giving me advice from the movie The Help.

She says she is a good listener. I don’t need a good listener.

She then quickly closes the session and schedules another appointment with me for next week.

The following Wednesday it is snowing out. Light flurries, nothing is sticking to the ground. Janis wants to reschedule our appointment because of the weather. As an after thought she offers me an opportunity to have a phone session. As we are already on the phone I decide to take her up on her offer. She then proceeds to complete part 2 of the intake.

Again she asks me a series of questions, some of them are repeats from the first part of the intake.

How often do I drink? Once a month, once a week, once a day, several times a day?

Then, as if my answer was not clear enough, she continues with asking if “other people” whoever they may be, have told me that I have a drinking problem. I’ve already answered this in a earlier question. I have one or less drinks a year but Janis seems determined to flush out the answers.

Not stopping to let me say anything, she moves through the second part of the assessment with the speed of a turtle. I hear paper’s ruffling in the background and it sounds as though she is trying to catch her breath. Periodically, she apologizes that it’s taking her so long.

I am so bored that I put my phone on speaker and begin to play Bubble Cloud on my phone. The mindless task of popping the little colored bubbles on my phone screen, dulls the pain I feel in my mouth and helps me remain calm.

She finishes up her questions and declares we have completed the intake.

Would I like to come in next week for my next session.?

I have nothing better to do and note to myself that no harm could really come from pursuing this so I make another appointment for next week.

We say goodbye and hang up.

I show up at the agreed upon time but when I arrive in the parking lot, I don’t know which door to enter. It’s been two weeks since I have been there and it was only once so I can’t remember, an unfortunate side effect of one of the medications I’m taking.

It’s a small shopping plaza and as I had only been to the office once before and have no idea what the name of the practice is, I walked into a door that leads to a hallway with closed doors up and down the hall. A few had signs for insurance companies, visiting nurses, and as my eyes scanned the doors looking for something familiar, I decided to check my phone for Janis’s number and call her. I scrolled down my contacts to no avail. I don’t even know her last name.

Then, just when I was about to give up, I find her office with seconds to spare, on the second floor at the end of the hallway, Personal Growth Concepts . I was only a few minutes late.

Hi, come in she called from her open door. I walk into her office and Janis , hair falling onto her face as two piles of folders, one in each arm. She kind of lets it all fall on the floor, asking me how I am while taking her seat.

“Things aren’t going well” I tell her. She frowns and gives me a look of pity. I can’t really believe she is having this reaction to my comment but it appears that it is so.

I continue telling her how anxious I am and how the pain is so bad. I cry through most of the session. Her final words to me; I can’t help you with any of that but i’m a good listener. I’m so distressed that I don’t even care that she can’t help. I make another appointment for next week, just in case I need someone to listen.

As I made my way back to my car, I see a flurry of people going in and out of a store front next to Janis’s office I walk closer to the entrance and read the sign,

Chiropractor Stratford. I walk inside. The staff are inviting, welcoming. They don’t even know me or my problems but I am hurting so badly.

I make an appointment.

After that, I totally forget about Janis. I forget I have an appointment scheduled with her, I forget to cancel it. Call

The next time I hear from her, it’s months later. She has sent me a birthday card, no note, just Regards, Janis.

Chapter 8: Cancer

With each passing day, I am more certain that my problem is coming from a nerve , specifically the Vagus nerve. I can’t say I know anything more about my theory. When I meet with the new chiropractor, he takes a series of X-rays and the results are alarming. He is certain he can help me with my problem, however, the X-rays he has taken indicate there is something on them that looks like a mass. He may have said more, but I stopped listening at the word Mass.

He shows me some white dots on the X-rays but I have no idea what I’m looking at.

Furthermore, I now know what’s causing all my problems, i am dying.

“Call your doctor right away “ he tells me

“I’ll send the X-rays to her office.” He continues.

I leave the office in a state of shock. I can’t think straight. My brain is scrambled. I reach my car and fumble to find my keys.

From the drivers seat, still parked in the lot, I call my doctor’s office , repeat what the chiropractor told me and the receptionist promises to let the doctor know.

I wait all afternoon for a call back. I finally get a return call by the end of the day. The doctor has put a referral in for me to get an abdominal ultrasound.

Days pass and I don’t hear from the radiology center to schedule the ultrasound.

I call several times. I am on hold for over an hour then get disconnected. I try again later.

“Thank you for your patience, says the lifeless voice on the other end of the phone,” someone from our patient care team will be with you shortly.”

No one from the team ever picks up.

In a moment of frustration , I actually drive over to Advance Imaging and cut the long line to ask the woman behind the plexiglass if I could get an appointment

“Can I get an appointment for an ultrasound?”

She can’t hear me through the plexiglass and the chatter from the people waiting on line makes it even harder.

“Can I get an appointment for an abdominal ultrasound?” I shout through the plexiglass.

This time the crowd behind me turns quiet. All eyes are on me.

The woman behind the plexiglass taps away on the computer keyboard, then looks up at me,

“I can only schedule out till the end of the month and we have no appointments available.”

I find this so hard to comprehend. I’m not even sure how to respond.

“Can’t you go into the next week?” I ask

She explains that her appointment log on the computer won’t let her book appointments beyond next week.

I ask why, a third time and this time she tells me that they are changing over to a new computer system next week and it will take some time to transfer patient records.

She’s hardly a scribe. One might assume that she, the woman behind the plexiglass, endeavors to handwrite all the patient records herself and it will take a long time, and they will not be seeing patients during that time.

I will have to wait weeks for the first available appointment. This is simply unacceptable to me.

I hear the crowd in line behind me begin to get restless and quickly make my exit.

Back in my car, I start to search google for another place to get the ultra sound.

On my first try, I get an appointment for the same week. I hang up, proud of my own perseverance.

For a brief time, I forget about the pain burning in my mouth. I’ve got bigger problems now.

It doesn’t take long for me to fully embrace my pending death. I crawl into bed and sob. I think of my 4 adult children, motherless. I think of my mother, still healthy and vibrant, I start to sob at the thought of leaving her alone in this world. Then I think about my wife, the center of my universe. I sob and sob louder, largely because no one is home so I can.

When my wife finally comes home from work, I am numb. I have used up all my tears for the time being and mentally retreat.

I have all but taken a shovel and buried myself.

I had once read a book many years ago titled

Death be not Proud. That was me. No bravery, no reassuring others that I’ll be alright, just shameless self pity. Indeed not proud.

As the hours pass into the evening, I start doing a life review in my head. What were my accomplishments? What regrets did I have?

My mind swirls the drain over and over like a toilets that won’t stop running.

After a long sleepless night, my wife and I head out for the ultrasound. We are both quiet, alone in our own thoughts, although a selfish part of me begins to wonder.

“Hmmm. Is she thinking what I’m thinking?”

As we drive, I become agitated, then angry,

I become certain that she is plannning her kindergarten lunch group for work. She remains silent but I’m certain that she isn’t mourning my eminent death

We drive in silence. I’m too frightened to say my thoughts out loud. So is she. We drive. We drive in silence.

We are living in the time of Covid so my wife can’t come in with me; not to check in, not to wait in the waiting room, nowhere. She tries to ask for an exception, just a minute with me in the waiting room but this is the time of Covid so the answer is no. She leaves dejected and mimes to me that we can text. In total, we are apart for 10 minutes.

Now we wait. The radiology tech says my doctor will have the results by noon. We wait all day, clutching my cell phone. I check it and recheck it to no avail. I look in missed called, recent calls, voice mail but still I’m not getting a phone call from my doctor.

I call my doctor. I know the results are in. I see them on the patient portal. I don’t know what they mean and looking at them only leaves me panicked.

The faceless voice on the other end of the phone calls me “Ma’am

“Ma’am, I can’t do anything about the doctor calling you back. I will give her the message.”

I feel like I’m living in a third world country.

Now, my voice is rising

“ Are you telling me that I have to wait till next week to find out if I have cancer?”

There, I said it out loud. The C word, Cancer.

There is a long pause on the other end of the phone, followed by what sounds like the click, clack of a keyboard.

I ask, really beg the receptionist to have the doctor call. Then just for good measure, add that I am waiting to find out if I have Cancer.

“Would you want to have to wait to find out that you have Cancer?” I ask.

The day passes followed by the weekend. There is no call. I intermittently sob and sleep to make the time pass.

By Monday, I am certain that I am getting my long awaited call but when the call doesn’t come, I decide that I don’t have Cancer. I don’t know how my brain made the leap, but I guess if the doctor is not going to call. I must be Cancer free and with that I come back from the abyss and cease to die.

I receive my long awaited call on Thursday. When I see the doctors name flash across my ringing phone I am astonished. By the time she calls I have already decided that 1) I am Cancer free and 2) I fired her last week. Maybe she didn’t get the Dear John letter . I was breaking up with her.

Chapter 9: Scrub Scrub Scrub

The burning knows no end. It only changes places with bitter metallic taste, terrible dryness, pasty saliva then back to burning .

I consult with my psychiatrist. He remains one of a handful of doctors who possess compassion and clinical skills, both now in short supply.

Having exhausted the few recommendations for treating BMS, I have become a nervous wreck. I feel jittery all the time and worry that I will be out shopping or with friends and the pain will hit. I don’t have any kind of plan should this happen. My go to coping skill involves an ineffective practice of negotiating with my pain, naming my pain, inviting it to share space in my body. I soon become agitated as the pain is my constant companion and sucks the joy out of every moment. Then I hate the pain and soon regret thinking that because I’m afraid pain will never go away

Someone from my on-line Burning Mouth Warriors group suggests an app called Curable. Someone says it’s free so I download the app and start listening. The app has several meditations which in my most desperate moments I try. They also have what they call “interviews with experts” which are essentially interviews with this one guy who wrote a book on relieving chronic pain. Everyone’s voice is eerily gentle as if they are trying to seduce the listener into sleeping with them.

Still I listen. I do these exercises where I write my younger self a reassuring letter that everything is alright now. Nothing is fucking allright. My tongue is on fire, I’m losing my mind wondering if I can live this way for one more minute, one more day, worse yet, the rest of my life. I shudder at the thought.

I continue onward for two weeks when all of a sudden, yikes, my free trial has run out. I didn’t read anything about free trial.

I have grown used to Alan’s calming voice, encouraging me to observe my pain without judging it.

I waste two days debating whether or not to spend the 49.99 for a years subscription. Only at the urging of my wife do I succumb to Alan’s temptation. I type in my credit card number hit finish and the keys to the castle are mine. I open the app and scroll down looking at the menu of options my 49.99 affords me.

I listen late into the night as Alan coaxes Cassie, who suffers from fibromyalgia, migraines and degenerative disc disorder, to reach deep into her memories and remember a time when she was frightened. I’m in Alan’s grip. I too am reaching deep, very deep, searching my own memories for a time when I was frightened. All at once a memory comes to me. Its 3:00am and I’m listening to Cassie sob and realize that I am sobbing too. Cassie does seem to have quite a bit to sob about. Her mother never let her cry when she was sad during her childhood.Her whole childhood.. The tears are flowing now, for me, for Cassie, for all of us who are suffering.

I sob for another minute or so before turning on the television and watch reruns of Judge Judy. She doesn’t make me sob. In fact, her hostile manner and New York accent seem comforting after listening to Alan and Cassie.

I look up Alan’s book. It’s 17.99 but if I sign up for audible it’s less. I sign up. Not even sure how much Audible actually costs, I proceed anyway.

It’s 4:00am and my wife lay sleeping next to me. The nearly silent gurgle that she emits serves as an irritant to me. She seems perfectly capable of sleeping soundly through the night while I search the internet looking for relief.

I put on my head phones and start listening to Alan’s book, narrated by, you guessed it, Alan.

I listen to Alan at the pool, in the car and late at night when I can’t sleep. He talks about Neuroplasicity. I haven’t taken a science class since the 9th grade. I can barely pronounce the word but the more I listen to Alan, the more I’m convinced I suffer from Neuroplastic pain.

My symptoms fit like a glove. The only thing about Neuroplastic pain that’s not so great is there is no easy way to treat it.

Now, completely immersed in the Curable World, I have essentially drank the kool aid and read anything I can about Neuoplasticity.

I do all the exercises recommended in the app. I swap out all my negative words for more neutral language, I become a avid somatic tracker, I even make an evidence sheet to prove to, I’m not sure who, that what I am experiencing is pain, real pain.

I find a Curable community on-line. Like minded people, all struggling like myself to find some relief from pain.

Funny thing is, these folks aren’t sharing the joyful success stories that Alan shared in his expert interviews. They sound frustrated and fed up.

I soon realize that really, I’m fed up too. I’m actually really pissed.

I spend all my mental energy, practicing the exercises recommended by my good ole friend. Alan.

No matter how hard I try, I can’t make any progress.

The folks in the support group, entitled Tell me your pain, tell me I’m trying to hard. Then one person chimes in that I must be holding something back. I can’t imagine what I could possibly be holding anything back considering it just me in my own head. Could I have left some stone unturned? Is there some childhood pain that I have left unevaluated? I’ve been in and out of therapy my whole life.

Soon after, I get an email from the good folks at the Curable app suggesting I consider upgrading to gain access to the classes. Classes taught by famous people. Famous in the world of Neuroplasticity. I wonder. if my friends at Curable already knew I would need the classes to do the work. Hmmm.

And how much might it cost to gain access into the Curable classrooms. A cool 1000.00 dollars.

That’s what my two week free trial actually costs if I want to get actual help.

I make one post to my new friends in the Curable community. I ask if any of the 1.3 million people in the group have actually gotten any relief from pain. Two people respond that they are working on somatic tracking and the other 43 people respond that they got little to no relief, however there is a consensus that it is depressingly hard to do and no, they have yet to be pain free.

I feel a bit scammed by Alan’s seductive voice and the I hate myself for thinking that my free two week trial promotion was going to help my burning tongue. Still, I can’t help but believe that I do have neuroplastic pain.

I ask my psychiatrist, who is still doing telemedicine visits from Covid, 2 years later. Every other doctors office is open for business except the psychiatrist. I’m beginning to find it suspicious. I wonder if he’s calling me from a chartered sail boat in the Mediterranean. Maybe from a beautiful vista a top the Himalayas. I know only this about him in the 21years I’ve been his patient. He is from Michigan, he has no television and he is an avid ice climber . I don’t even know what ice climbing is.

When my telemedicine appointment arrives, I ask him if he knows anything about neuroplastic pain.

While he frankly admits the limits of his knowledge in this area, he remembers while we are talking, about a doctor who treats chronic pain with ketamine infusions. He gives me the number.

I have no idea what ketamine is, I spend sometime googling it and then give Dr Ang a call.

I dial the number and I already feel the growing frustration that comes every time I call any doctor.

Often, after a dozen rings or so, I get a call center that urges me to leave a message for the doctor. Sometimes I don’t even get a return call. Dr. Ang answered his own phone. When the call was answered so quickly, it took a moment to remember who I was calling.

“I’d like to leave a message for doctor Ang” I say into the phone”

I’m anticipating a mountain of difficulties to even leave a message so I am surprised when the voice on the other end says this Dr. Ang.

I already have my speech ready, so I am unprepared when he says, this is Dr. Ang.

I plunge forth with my burning mouth story and then he repeats himself,

“This is Dr. Ang.”

My mother would say that he must have no patients which is a bad sign. She would say a doctor who answers his own phone is too cheap to hire a receptionist. Yet I am so touched by the fact that he has removed all the obstacles to reaching him that I feel nearly teary.

I tell him that I suffer from Neuroplastic Pain, which I add is my own diagnosis.

He is so kind, and listens to my tangled web of a story. For the first time in 9 months, someone hears me. He can help me. No, I don’t have to wait 6 months, in fact he will see me tomorrow. It’s all too good to be true.

Still, I go.

As much as I’ve read, I still don’t know much about what ketamine actually does. It was used during the Vietnam War as anesthesia, but fell out of favor when better drugs became available. In the 1980’s it was discovered as an effective treatment for PTSD and depression. More recently, it has been used for chronic pain.

On my first visit, I complete the usual paperwork which includes, in my case, my fairly substantial medical history and numerous medications.

Dr Ang then enters the small room where I sit filling out the paperwork and begins to explain the pros and cons of the treatment. The cons are relatively small and as there is currently no protocol for treating Burning Mouth Syndrome, we are traveling down the road not taken. Am I game? Yes I am.

Dr Ang is so lovely that it’s hard to believe he’s even a doctor. I try to temper my excitement that I might be free of this unrelenting pain. My infusions will start the next day.

My wife comes home from work and I explain what has transpired thus so far and tell her that I need a ride to and from the treatment. She agrees to drive me and stay with me during the treatment.

I probably should have been a little anxious as I really didn’t know what to expect.

Instead, I lay down in the very comfortable chair with a pillow and even a warm blanket. That alone has a palliative effect on my burning mouth.

After a few false starts, Dr Ang finally gets the IV in my arm, turns down the lights, leaving on a small violet light in the corner of the room and puts a set of headphones on my head with this music that is both relaxing and strangely seductive. The music feels like it’s taking me away from all my worries, all my pain.

I surrender to the chair, the music, ketamine and fall into a kind of hazy dreamlike state. I find it incredibly pleasant..

I can actually feel the ketamine scrubbing away at my broken brain. All I can think is scrub, scrub, scrub.

The time passes quickly and then I’m done. The needle is removed from my arm and after a few minutes, I get my bearings and make my way to the bathroom. Still a bit in a haze, I notice as I sit down that the toilet seat is heated. I find it surprisingly pleasant and wonder to myself if this small detail is deliberately there to make the experience pleasant even in the bathroom. When I stand to flush, I see that the whole seat has buttons and lights and can’t figure out how to flush. I look and look and just as I am about to call for help( I do not want to have to call out from the bathroom that I needed help flushing) good fortune shines down on me and I find the handle to flush. I can not convey the sense of accomplishment I feel in flushing that toilet.

I then make my way out with my wife and we drive home.

I go back to Dr. Ang several times in the coming weeks but inevitably the pain always returns.

Undeterred, I discuss with Dr Ang how to proceed.

We agree to up the game and try a 4 hour session.

We schedule the infusion and although I’m a little leary about getting the 4 hour infusion, I push my concerns away and schedule the appointment.

I am in pain to such a degree that one might say that my decision is born of desperation.

I go back to Dr Ang with my wife, my driver and my greatest cheer leader.

This time, while the infusion isn’t unpleasant, it is bizarre.

I feel untethered from my body and occasionally call to my wife just to ground me. At one point I can’t tell whether my eyes are open and closed.

While I float around the Ketamine world, I imagine that this is what death is like. I can hear my voice but I’m not sure that the words make it beyond my mouth. I can hear voices from time to time but can’t figure who is talking and certainly I can’t understand what’s being said .

After what feels like a matter of minutes, I hear my wife’s voice clearly now although her face looks like an Anime character. I feel the needle being removed from my arm but still feel like I’m floating outside my body.

I ask for a drink. My lips are numb and my mouth is dry, so dry

“ Am I ready to get up?” Someone asks. I don’t feel ready but at the same time I have an overwhelming pleasure to pee. It’s as if I have drank gallons of water. My bottom longs for the comfort of the heated toilet seat with all its fancy buttons.

I make an attempt to rise from the comfortable seat, but reality quickly kicks in and I soon realize that I can’t really sit up, much less walk.

We wait a minute or two and try again. I’m highly motivated to get up as my bladder calls out for relief. I manage with my wife’s help to sit up

And then I rest for a while. I have no sense of time and when I open my eyes, the whole room spins as if I have awakened from a drinking stuper.

I look up at my wife and suggest that I might need some help standing.

I somehow make it to my feet but feel an overwhelming urge to throw up. Someone puts a sweet something in my mouth to help with the nausea but it only adds to my urge to throw up.

I suggest to my wife if she would help essentially drag me to the bathroom. I realize that without her, I’d probably be lying in a slump in my own urine on the office floor.

We somehow make it to the heated toilet seat. My wife starts asking me questions about the toilet seat but I can’t really speak. Instead I enjoy the moment as my bladder empties into the bowl. What a relief!

That is until I hear my wife’s impatience and know I have to get up. She too has heard the last tinkle and has been there with me at the infusion center for hours. She is ready to go home. With her help, I make it back to the room with the comfortable chair and wonder how I will ever make it to the car.

While I rest a moment, my wife goes and gets the car. Someone then helps me into a wheelchair and wheels me out to the car. Even with help, I basically fall into the passengers seat. I have no memory of the ride home.

I awaken in my wife’s car. I am disoriented and want to just stay there in sleep. My wife helps me out of the car and all I can hear is her detached voice commanding me to hold in to the car. I lean against the car to catch my breath and my wife soon appears seemingly from out of nowhere and part supports part drags me to the house. My only hope is no neighbors saw me. My goodness, what would they think.

I arrive in my bedroom, unable to do more then fall onto the bed.Here is where I will remain for several hours. The nausea subsides but the room continues to spin. I close my eyes and think scrub, scrub, scrub.

Chapter 10: The Big Picture Guy

The medication I have taken, has caused something called Brain Fog. I suppose it sounds like a momentary problem but my fog is staying and I forget everything .People reassure me, it happens to everybody.they say. In fact it’s happening to them too.

Then there’s the story about losing their keys, or forgetting someone’s name. I don’t care.

I know me. My brain is slowing to a crawl.

We recently moved and the people in my neighborhood are extremely friendly. Extremely.

I meet most everyone at the pool. It’s been perfect pool weather and the 55+ crowd are all out in their giant straw hats and visors, all floating on their noodles in the heated pool. It is 97’. I imagine them all running home to put in their sweaters because of the central air conditioning.

With each new introduction , it takes less then 30 seconds to hear their name, encode and then forget their name I have this one cool move where, as the conversation is winding down, I act all casual and convenient and ask

“What was your name?”

Of course they tell it to me but once again, I can’t remember their name long enough to get out of the

Pool and put it in my phone.

The burning in my mouth has a rhythm to it . Sometimes I work on my “somatic tracking” by observing the burn in a none judgmental way. My mouth remains so dry and as the cold water splashes into my mouth, I feels as though it’s already gone and the dryness is returning. I am teaching myself to ignore it so I can go to sleep at night. There’s not much I can do when the bitter metallic taste . I try to remain calm. I tell myself that I am safe., nothing‘s going to happen to me, blah blah blah, then my thoughts return to self pity. Something I am forever fighting.

There’s this guy, my wife tells me.

“Is he a doctor?” I ask impatiently

“Yes, of course he’s a doctor she tells me..”

“He’s an internist who looks at all your information and tries to see how it’s all connected.”

She continues.

I take the number and despite the questionable Yelp reviews, the phone is answered by a pleasant receptionist who is quick to give me an appointment for the following week.

In the coming days I will regret making the appointment. If he can’t help me, I will once again be disappointed and I can’t bare it.

My wife feels very excited about seeing the new doctor and I feel like I owe to her to explore any and every possibility.

The day arrives and we arrive early to the appointment. We wait in the car for a while but my wife has a theory that if you go in early, you will be seen early, so we go in. The small waiting room is crowded and everyone is on their cell phone.

I approach the receptionists to say that I have arrived. They are two young girls, certainly more girl than women, and both are covered from head to toe with hijabs covering their heads.They check me in and I take the empty seat next to my wife.

Within minutes I hear my name called and rise from my chair and follow the nurse to the exam room.

Instead on a doctor, I was greeted by a student P.A .

She sat at the computer in the room and began asking me questions. The questions were mostly about why I was there. I gave her the well worn down narrative about the dry mouth, going into detail about how dry it really is. I tell her it’s like drinking sand. I want her to know that this is not something that Biotine can fix. I tell her about the metallic, bitter taste. I tell her it’s like sucking on dirty pennys, some said that on line and I thought it was a good metaphor. I mention the pasty saliva and the spitting and how the saliva has a mind of its own. Finally , I get to the burning and of course they’re no shortage of metaphors for that.

The P.A. Student continues sitting at the computer screen typing away. Beyond the occasional question for clarification, the PA student has nothing to ask me.

I begin to add more details to my story. I mention the Type1 diabetes, the corneal edema, the arthritis, The student quickly excuses herself muttering something about getting the doctor.

Minutes later the doctor enters. He doesn’t introduce himself but says instead to get blood work and come back in 10 days for a physical.

I wasn’t expecting to leave the office cured, but maybe a handshake and some hope.

I get the lab work done and wait. First I wait till July 4th weekend has passed, then I count the days till I have the appointment for the physical.

The day arrives however and my mood has turned grey and cynical.

I no longer want to go to the appointment. I’ve have had numerous physicals this past year and I suppose I’m coming to believe there is no cure for what ails me.

My wife urges me on and I resent her for her optimism.

We go.

The waiting room is small and crowded and everyone in the waiting room is looking at their phone. No magazines to steal here.

After 30 minutes or so, my name is called and my wife and I rise from our chairs and follow one of the receptionists to the exam room I was previously seen in.

Soon after, the PA student enters the small exam room and performs the third EKG I’ve had this year. The EKG has become the flavor of the month. It’s a simple quick test but I am hear for my burning mouth and can barely tolerate the test. I consider it a total waste of my time. Following the test, she listens to my lungs, another organ that is completely fine . That’s it.

.

Chapter 11: Getaway Cure

I scroll through the posts from the gals at the, Burning Mouth Syndrome Warriors . Someone just posted her miracle. Well, in the miracle world, this is a very small miricle, nearly not a miracle at all. Still I inhale every word, hoping desperately that I can replicate her miracle; be free of this horrible bitter taste that haunts my mouth day after day.

Apparently the woman went on vacation and all her symptoms went away. She had the most wonderful time and no burning, dryness or bitter taste at all.

“Did you drink anything special?” Asks one woman

“What medications do you take?” Asks a young man

Her answer; she went on vacation to Bali.

I move on knowing I’m not going to Bali.

A few days later, someone else posts about a spontaneous remission during vacation. She went to Cancun. All her symptoms disappeared

The only hiccup? Their symptoms all came back after then came home.

Though disappointed by their news, periodically, I can’t help but notice several other warriors, reporting the same thing. Finally, after weeks of ruminating about this, I suggest we get away for

A few days. My wife agrees,

I’m in pain every day and am concerned I will be far away from home, too far away to get medical treatment should I need it. Shortly after I begin an internal debate in my head.

Should I go? Should I stay? I haven’t been anywhere in a year except Rite Aid when this nightmare started last October..

I spend several nights on my phone looking for my miracle destination. The choices were limited to the Catskills in New York My sister-n-law is a nurse. She works on a dialysis unit but in an emergency I I’d like think she could help. Help with what? I can’t begin to imagine but I feel safer having my own dialysis nurse 15 minutes down the .road.

Finally, I choose a hotel that is located at a casino.

near my sister n law and brother.

On the way, We stop briefly at their house to say hello to them. We then head out to the hotel for check in.

My mouth is dry and my tongue is telling me it is time to shut down.

It feels like forever till we find the entrance of the hotel. There are no signs.

After unpacking the car and finding the only bellhop at the hotel, we wait forever on a short line to check in.

The only person behind the desk is also on the phone. I observe her, phone cradled between neck and shoulder, while waiting on the hotel guests in front of us.

I start to do a play by play of the hotel staff behind the desk.

“Is she hanging up the phone? Yes she is! No wait, she is still talking, but she approaches the folks in front of us. She”s taking their credit card, still talking on the phone, oh no, their credit card is rejected. The couple seem indignant.

“Try again” says the husband, then he turns to the wife and blames her for her irresponsible spending.

Still with phone cradled, the only person behind the desk, takes the credit card and runs it through again. Will the card be go through, will we move up in line? Will my tongue stop burning? When does my vacation begin?

Finally another person walks up behind the desk. Is he going to help out the next person in line? Yes, he’s approaching the girl on the phone, oh no, she waves him off as if to say, I got this.

Thankfully the couple in front of us has a second credit card and eureka it goes through.

The couple moves on and the girl behind the desk puts down the phone. Quickly, I tell myself as if the only employee behind the desk will read my thoughts and process our reservation so my miracle vacation can begin.

She asks for my identification and credit card. I pass it through the plexiglass, a remnant from the pandemic.

Finally she hands us our room keys, but not before answering the phone. She laughs into the phone. I’m certain she is on a personal call but I no longer care. My mouth is screaming in pain and we quickly motion to the only bellhop in the whole hotel, and make our way to the elevators.

On the way I whisper to my wife that I no longer think a dollar is a good tip and she reaches into her pocket and pulls out another dollar. I motion with my eyes that we need to tip even more then our typically generous two dollar tip.

I mouth the word five to her in the elevator and she hands me a crinkled five dollar bill.

We finally arrive at our room and I quickly motion the bellhop out but not before discretely handing him the five dollar tip as I had seen my uncle do so many times before.

I felt like I was the shit, even through my pain, I was proud of our first big tip.

I lie down on the king size bed and my wife checks out the television to see if it has our favorite channels from home.

I wait for sleep to come. My tongue, reminding me why we are at this hotel casino in the Catskills.. When I awaken, my mouth should be completely fine.

“They have HBO,” says my wife as I drift into oblivion.

I murmur that we have it at home but she happily sits back and watches “The Rehearsal” as I fall asleep, waiting,waiting,waiting for my miracle.

10,000 Dollars in Supplements

This is it, This is the absolutely the last doctor I’m going to see.

I’ve been tested twice before, for Lyme Disease however I have been reading up about it, Lyme Disease and have discovered that the test most commonly used for Lyme Disease is ineffective and produces nearly 65% false negatives.

I find someone from the Burning Mouth Warriors who explains to me that I need to go to a Lyme Literate doctor.

They use a much more sensitive test to detect Lyme.

My wife is convinced that I do have Lyme Disease and if for this reason only, I follow thru with finding a Lyme Literate Doctor

Then, as if someone is answering my prayers, a woman for Brussels posts that she just tested positive for Lyme Disease. I respond back, that was recently tested and was negative. She quickly replies that I need to see a Functional Medicine Doctor.

I look up Functional Medical Doctors near me. I’m not even sure I know what a Functional Medical Doctor is but I find one close to my house. I skim through their website and make the decision to call in the morning.

“What’s a Functional Medical Doctor?” Asks my wife as we’re going to bed.

“I think it’s a real doctor who also works with holistic medicine.

In fact, I have no idea what I’m talking about.

I ask my new friend on Facebook from Brussells what a Functional Medical Doctor is but it takes days for her to respond and by then I have committed to go.

I call to make my appointment and discover the friendliest staff In healthcare. So happy to hear that I called that they made me feel special, like a long lost friend that they had missed terribly.

There was no voice mail, their menu options did not change, nor did they direct me to call 911 in the event of an emergency.

They called twice and left messages that I had an upcoming appointment which personally I thought was a bit excessive being I made the appointment only days before and the appointment would be the day after. Still, I reassured Gail, the person calling, that I would not forget.

I was now in the world of private pay. My insurance wasn’t going to pay for something akin to witchcraft or voodoo.

Everything here is an out of pocket and it is indeed expensive.

We have been going out of network on and off through out this whole oral nightmare partly to do our due diligence and party out of desperation.

My wife and I enter the small waiting room at our assigned appointment time. There don’t appear to be any other patients. My wife and I are surprisingly aware at how nice the small staff is. We are used to waiting in small cramped waiting rooms, staffed by overworked and overwhelmed employees, not eager or inclined to help us.

This office staff is downright cheery. However, upon closer examination, I realize that what looks like a normal waiting room at first glance, is actually a pharmacy, filled with supplements. I really don’t believe in supplements. As in I don’t believe they help you, in any way, at all.

I have a friend who went to a Naturopath and signed a three year contract to pay for almost 10,000 dollars in supplements. Sure she made the decision to buy the supplements herself, but it seems to me, that it was the very objective of the practice. And yet, here I am, just waiting to be the owner of 10,000 dollars worth of supplements. I am. already thinking about where to store them. We already have a piece of furniture devoted fully to housing all my medication. There is no more room for more pills.

We are quickly met by Dr. Patterson and led into her office.

She is attractive in every way that a person can be attractive. She is maybe partly Asian. Maybe not. She smiles as she speaks reassuringly. So reassuring that she can lull you into taking 10,000 worth of supplements that you don’t need.

I tell her my story. I tell her how dry my mouth is and how my tongue screams from 4pm-8pm every night. Sometimes till 9:00pm, sometimes from morning till night.

She nods knowingly in all the right places as if she can comprehend the incomprehensible.

She asks more questions. She takes her time listening and only interrupts me to slip in a quick answer.

She then tells me that we are going upstairs to examine me.

I imagine her examining my aura. Maybe measuring my energy waves?

Upstairs looks largely like someone’s home, yet in the exam rooms there are hydro beds like the ones at my gym. One year I paid an extra 10.00 a month for the Purple Plan. Admittedly, it was an indulgence. I was woooo’d into the Purple Plan by the large looming signs plastered everywhere at the gym. Even as I check in at the desk, the pamphlets they hand out boast tanning beds, massage chairs and the most seductive of all, the Hydro-bed.

For years I had seen other gym members go behind the black curtain that was forbidden to me with my Yelliw Plan and so for a brief moment I felt privileged. I signed my new year long contract and was reassured by the girl behind the desk that my credit card would be billed monthly at the new rate of 20.00 a month.

She then gave me the keys to the kingdom, a new purple laminated membership card for my key ring .

There I stand, starry eyed, not quite sure what to do next. Then I snap back to reality. “Would I like to use any of the equipment ?”

asks the girl behind the front desk.

I choose the Hydro-bed and am shown a small alcove in what appears to be nearly in the display window at the front of the gym.

I stand there awkwardly holding my gym bag , waiting for my hydro-bed experience to begin.

Finally, the girl stands up from her crouching position, turns to me and declares” Something must be broken.” I’ll have to call someone in to fix it.”

It was then that I could nearly feel the extra 10.00 a month fly from my wallet. “What was I thinking?” How dare I be so self indulgent?

The girl offers me the massage chair. I say sure, though I’m terribly disappointed when she hands me a token and tells me that if there’s a problem with the chair, just come get her and she’ll give me another token. The chair is too strong and squeezes my calves so hard that it hurts. Then suddenly it stops. The chair massage lasts ten minutes. I stand up and walk past the hydro-bed feeling the pain of wasting my money on a dream.

So Dr Patterson asks me to lay down on the hydro-bed and while it was kind of interesting

It certainly wasn’t worth the 650 dollars I was paying for the visit.

She doesn’t even examine me. She checks a couple of things with some naturopathic gadgets and then tells me I can get up but the hydro-bed is so squishy that I can’t get up without help. Getting out of the hydro-bed was a two person job and not so pretty.

We return downstairs and already she is ordering things labs that the insurance doesn’t cover. She then quickly runs down a list of supplements she wants me to try. We nod our heads and agree to come back in a few weeks for a follow up.

She escorts us to the front desk and like a swag bag, there waiting for us is a bag filled with supplements.

We hand over our credit card and leave with our supplements. There is not a word exchanged between us.

After the follow up visit, Dr. Patterson orders another bag of supplements for lots of ailments I don’t even have.

She tells me I don’t have Lyme Disease and it’s not till I get home that I realize, I now have 2 bags of supplements and none of them help my poor burning mouth.

I don’t even look at the second bag. It serves as a sore reminder. 10,000 dollars.

Back Again

I’m not sure, and I cant tell because my brain no longer works like it did before all this started, but I think the bad taste is coming back, along with the dryness and the burning. Alright, the bad taste is here, the burning is here, the dryness is here.

Having pretended I didn’t notice it worked for a few days, I can’t ignore it anymore.

At times I think I must be losing my mind.Was my mouth ever really feeling better? It’s hard to remember when I started feeling better. Then I glance at my nightstand and spy my dog chewed night guard. There’s my proof. I haven’t worn it in weeks.

It’s sitting there in it’s little place by the lamp, waiting for the Lyrica to stop working so it can take its rightful place in my mouth.

I ask myself why. It’s not just the pain, it’s the terrible sense of loss. I feel as though the weight of the world is placed squarely on the shoulders. I see no future for myself without pain. The pain sucks every bit of joy I have ever felt. I was a joyful person before my mouth went ablaze.

Now I’m back to being a prisoner held captive by my mouth. It has a life of its own and I’m merely an audience member watching and feeling all the changes it’s going through.

The suffering knows no end. On the outside I appear completely normal. That itself takes such a toll on me. Smiling on the outside, pain on the inside. It’s almost a year, my anniversary so to speak. My anniversary of being married to pain.

It’s almost too much to bare but I have no choice.

Before I took the Lyrica I created a kind of hope by pushing through the pain and looking for answers.

I learned along the way but the price was high.

I ended up being the victim of a lot of bad care and hurt by doctors so ignorant that they didn’t take the time to even Google Burning Mouth Syndrome

I seem to have run out of road. I’m not sure which direction to take. None of them look good to me

There’s the elimination diet in which a systematically remove foods from my diet to see which ones might be causing pain. Yesterday, the grape was my friend. Today, the grape stings my whole mouth.

I could go back to trying the medication route but it seems there are just too many hazards.

I was doing some work with a psychologist, Dr. Jones, around chronic pain but I’ve lost my voice due to my paralyzed vocal chords.

My one outlet cut off to me.

Then there’s my boyfriend Alan Gordon. His book sitting in my audible library, waiting to be listened to.

I’ve become jaded and can’t bare to hear his upbeat happy voice going from success story to success story with his somatic tracking and stories of childhood trauma. I guess in all fairness I should t least finish the book before criticizing it.

So I’m back on-line with the rest of the Burning Mouth Warriors, posting horror stories about teeth falling out, fuzz on their tongue and my personal favorite, I’d rather be dead than live like this.

Thus my plan, if you could call it that, is to focus on any number of other things that are broken on this lemon of a body

.

A sleep study Friday, cardiologist Monday, and I can’t forget the implant for my broken crown, the total numbness on my right thigh, and then there’s the ongoing pain on my lower back. There’s more, but how much can one girl do?

Too friendly

Supplements behind the desk

Dr Lovely

Peggy McMullen that’s what I said. It will be a year in October. Have you been tested for all the usual suspects, thyroid, Lyme Disease, anemia. reflux, vitamins b, zinc? I Also went to h by anaturopath and a Chinese herbal medicine acupuncturist ? Functional Medicine Doctor? What l are you taking for BMS and what are you taking for other conditions? I stopped taking med that I had taken for 21 years just to see if that was the culprit. Have you looked into ketamine treatments?

Tried the curable app?

Have you tried Naltrexone, Suboxone, pain patches? Cymbalta?

Have you rid yourself of metalq utensils, stopped eating foods with citric acid? Done an elimination diet, histamine diet, alkaline in your water? There’s plenty more I didn’t mention.

Having tried clonapin, Gabapentin, Naltrexone, amitriptyline, b 12 shots and so much else , that I could no longer keep track when I went to new doctors and they asked for my meds. Have you really tried everything?

The reason I ask is having done all that and more myself and gotten zero relief I said I was done trying anything. Completely done!

My wife who has been at my side every moment of this nightmare, who waited on me, consoled me, went to all new appointments, and never lost her patience, even when I did, she asked me to please try Lyrica.

I spent months getting off Gabapentin 2400mg and wanted no part of it. I did it anyway. How could I say no? I’m not claiming it cured me but it has helped more then everything I tried before. I no longer have that terrible moment in the morning when my mouth takes on a life of its own. Small victory.

My mouth remains painfully dry and never feels quite right. I’m not suggesting the Lyrica is the answer . I guess what I’m trying to say in a long winded, roundabout way is that none of us know if or what will work for us and I was standing my ground about a med that actually helped, not cured but helped.

I never stop looking for help. In fact, the one thing I learned was that any pain that has no structural problems or lasts more then three months is considered chronic pain. There is a lot of literature and studies on chronic pain. Far more then BMS. I still want to cut my tongue. It has become my Nemesis.

The only thing that keeps me going is looking for an answer. I will do for myself what western medicine has failed to do for me. I will not stop because the alternatives are so much worse. No hope is so much worse. How does one live in a world with no hope?

Rinse

Cranberry juice

Salt water

Baking soda

Magic mouth wash

Tabasco

Metequil

Chinese sand

Baking soda directly on the tongue

I sadly discovered that none of the specialist, or doctors or really anyone I saw, knew more then me about BMS ( not saying much)

The only specialist I see is a pain specialist.

My feeling is that he at least keeps trying to help.

I have seen

3 Dentists

1 Neurologist

2 Rheumatologist

2 internists

1 ENT

1 Oral Surgeon

1 Anesthesiologist ( ketamine treatments)

1 psychiatrist

1 Gastroenterologist

2 Chiropractors

1 Naturopath

1 Chinese Acupuncturist

1 Functional Medicine Doctor

3 Pain Specialists

1 Endocrinologist

2 therapists

1 chronic pain specialist

I imagine I’ll soon Be joining a Coven and will participatibg in a ritual animal sacrifice. The only hiccup I was that several member of the coven were angrily expressing their dumispkeasAnd then, after all that suffering and physical pain, financial and emotional cost I realized there is no known effective treatment, no known cure. Even an oral pathologist who theoretically would be the person to see, would tell you they really know nothing about BMS.

Don’t worry about Being sent into circles.

Find a good,kind, physician who is willing to work with you on pain management. Get a mouth guard and read everything you can about this condition. The answers are out there but rare is a doctor who knows about it or worse, cares

Good luck!

Andrea at Jackie’s office said make me look pretty

Game diabetic trivia

. The Lyrica is helping. I’ve gone from a 10-5. What does that mean? Nothing (lol). Really each of us are so unique but even though I don’t have a10 alarm fire in my mouth, the left side of my tongue likes to sizzle all day long. Lyrica is for nerve pain so it doesn’t help with dryness and in fact can cause dryness. I am still so grateful for what ever it has done.