Since people are getting a diagnosis earlier these days, the symptoms will continue to manifest in greater severity until you reach whatever plateau your symptoms will top out at; unless you find a treatment that sends Meniere’s into remission. Makes it seem to disappear, like a cancer sometimes does.
Had I been diagnosed back in the 1980’s when my symptoms first appeared, I would have had a diagnosis for a disease that slowly got worse over the next twenty years until it turned me into a couch dweller that suffered vertigo near-constantly, for years. So, yes, the severity can increase over time. That doesn’t mean that it will increase.
As it is, I kick myself for not being honest with the doctors and demanding some kind of a diagnosis sooner. Had I started betahistine back in the eighties (the treatment that seems to work for me now) I might have been able to continue working far longer. The symptoms probably wouldn’t have been as severe. The plateau could have been much lower.
With remission, the symptoms disappear for years at a time. The people lucky enough to experience that bliss would tell you Meniere’s doesn’t get more severe. I would have liked to have had their experience, rather than mine. Newly diagnosed people may well have that experience. I hope that they do.
The phone buzzes with a notification. “Chest is open. She is on pump now. Everything progressing normally.” The Wife is undergoing open heart surgery. I sit in the waiting room alone, mercifully mask free because of this.
I remember the first time I heard open heart surgery used as a phrase. My grandfather had undergone a quintuple bypass back in the seventies. The surgeons had marveled at the complexity and his near-miraculous survival at the time.
The doctors and nurses now refer to these kinds of procedures as routine. “We do them all the time.” My heart doesn’t know this, refuses to accept that the opening of that beloved chest could be anything less than a near imminent death event. My all too active imagination can paint the scene in Technicolor for me, if I allow it.
I don’t allow it. I don’t want to see, to think of her that way. A piece of meat on the cutting table. Instead I will fill my head with classical music and meditate on the reunion we will have in a few short hours. No other outcome will be entertained no matter how many times those ravens of doubt perch over my mental doorways. I will see her again. We will embrace and she will chide me for being a silly sentimental old man.
That is the picture I will paint in my head instead of those other nightmares. Time enough for the nightmares afterwards.
The cardiologist remarked that he had never heard of a fever-induced trip to the emergency room being used as a detection method for cardiological issues, but we had known about the heart valve deformity for years by that point. The fact that she would need surgery at some point in the future has been a known quantity since the day we started regularly going to the cardiologist, at least twenty years ago. It was her blue fingers that freaked me out that night. Her fingers had never been that color before.
She was diagnosed with an ESBL infection in addition to the heart valve blockage. They didn’t even know for certain that she had the infection, it was just on the plate that they used to culture bacterial growth, to try to see what was causing the fever. She got the special antibiotic drugs anyway, and the nurses had to gown up for the entire time she was at the hospital. Visitors and guests were expected to gown up as well. This earned her a private room later in her stay, so she wasn’t going to complain about the extra drugs she had to take.
I insisted that they run tests to determine if she was still infected with the antibiotic resistant strain of e-coli before they released her, and the tests came up negative. That was all I was worried about. I didn’t want her to be released only to have the fever recur and me have to take her back to the ER a second time. Her attending physician didn’t think it was the ESBL causing the fever anyway, she thought it was a allergic reaction to a Botox outpatient treatment done the day before. That is the most likely culprit in this little medical drama, the antagonist that triggered open heart surgery for the Wife.
The Wife has complained repeatedly that her renewed heart beats too fast. When she airs her complaints, I quietly thank her cardiologist for making sure her heart continued to beat regardless of pace. I would have missed her presence, her voice, if he hadn’t. It would have been difficult to find a reason to go on without her heart beating next to mine. Hopefully that predicament has been postponed for another twenty years. Here’s hoping we both make it to our fiftieth anniversary.
Friday July 30, 2021 – She got up and got her pills today all on her own. She’s been home for a week and relied upon me for everything until today. The Wife is coming back to herself. It is a good sign.
I’ve been taking part in illness tracking with outbreaksnearme.org since the Spring of 2020, when the Trumpist COVID debacle was in full swing. Ya’ll remember those days right? The hazy smoke-filled days as civilization fell? The zombies roaming the streets swarming the unwary?
There was no official testing to be had. No way to know who was sick and who wasn’t and no way to socialize without risking your own life. So we hunkered down without any government to been seen, no authority coming to the rescue, waiting for the chance to score some toilet paper from the remains of the local shopping center while covered in protective gear to keep the zombie plague at bay.
When outbreaksnearme.org started it called itself COVID near you but within a few months the organizers realized that they could use the more generalized data to track spreads of any infectious disease in the population. It also allowed people who just had symptoms to report themselves sick even when they didn’t know what it was.
A full year has passed since those hellish days of anarchy, with me always always responding “healthy” to the prompt:
COVID Near You is now Outbreaks Near Me! We now track flu too. Are you still healthy? Please answer Healthy or Sick. Reply STOP at any time to unsubscribe.
Today I finally had to respond with sick. The Wife has been out galivanting around town joyful at having escaped from the zombie apocalypse, mask-less and fancy-free for the first time in recent memory. While she was out having a good time she apparently picked up a bug. I, of course, caught it from her because that is what I do. I’m three days into it now, a nasty cough, aches and pains, and chest tightness that is triggering the Meniere’s symptoms. I’m having a joyful time.
It’s almost enough to make you miss 2020. Hunkered down in your hovel, hoping to score a clean corncob to wipe your ass with. Zombies scratching at the walls while you heat yourself next to the fire you made from the last chair in the house, boiling the leather upholstery for something to drink and chew on later. At least there was only one disease out there then. One disease that made you want to chew on the brains of your neighbors.
…although the lethargy spread out over nearly a week. I’m only getting back to my old habits now, three weeks later. Getting back to my old habits just in time for the Wife to be hospitalized with some other unrelated illness. Ah, the joys of normal life.
I was on a work call when everyone (a group of disabled women) was only communicating through text. Text read out by screen readers. Time slowed down. We all typed one after the other. Waiting for the other to complete their thought. Waiting for others to read. Waiting for others to type. The entire process had patience embedded in it, but also a challenge to “normative” ideas of discussion time and pace. No one impatiently typed over others or wanted to “move things along”. The time was well spent in engaging with each other at our own pace.
Time is not what we think it is. Time is not what business tells us it is. Time is not the metronome beating out endless seconds. Time is the breath in your lungs. Time is the beating of your heart. Time is the length of the hug you give, the hug you receive. Time is to be treasured.
Covid-19 appears to be one of many infections, from Ebola to strep throat, that can give rise to stubborn symptoms in an unlucky subset of patients. “It is more typical than not that a virus infection leads to long-lasting symptoms in some fraction of individuals,” Iwasaki said.
In this week’s episode of Unexplainable, we dive into what we know about long Covid and what other viruses can teach us about the condition, including the leading hypotheses for what might be driving symptoms in Covid long-haulers.
I suspect that Long Haul is a syndrome like most sufferers understand Meniere’s to be; a group of symptoms that have divergent causes. It is the only way to explain the varied treatment outcomes. The people who don’t find relief from being vaccinated for SARS-Cov2 probably do have an immune system problem and not reservoirs of the virus. It is entirely likely that both causes are simultaneously true for different sufferers.
Meniere’s treatments that I find give me relief do cause worse symptoms for other sufferers. Different causes is the most likely explanation for these results.
From a letter to Vox
More than half of the 236 million people who have been diagnosed with COVID-19 worldwide since December 2019 will experience post-COVID symptoms — more commonly known as “long COVID” — up to six months after recovering, according to Penn State College of Medicine researchers. The research team said that governments, health care organizations and public health professionals should prepare for the large number of COVID-19 survivors who will need care for a variety of psychological and physical symptoms.
How old were you guys when you were diagnosed and when did your hearing start needing help?
It varies person to person. No one can tell you how your disease will progress or that you will or won’t be losing your hearing over the course of years. Unless you go bilateral like I have, you will always have at least one good ear to hear with. Only time will tell, so take comfort in that.
I can’t hear music right anymore. The bass tones are gone in the left ear and impaired on the right. If I want to hear a television program I have to plug in headphones or turn the volume up very loud. I won’t use hearing aids because I’m frequently plagued with ear pain from loud noises, so I have to be careful with the volume and the mastering of modern soundtracks varies so much in volume that it can drive you crazy trying to keep the soundtrack audible and yet not painful to hear.
Bone conduction headphones are my savior. I can only listen to music through them and hear it correctly. I need to figure out how to get them to work seamlessly with the gaming console we use to watch television; get them to work for me without turning the volume off for everyone else when I turn them on. I’m still working on a solution for that.
If you do loose your hearing, you don’t want to be caught flat-footed having to learn a whole new method of communication on the fly. So if you are concerned about going deaf, study hearing loss. Learn American Sign Language. Get comfortable with the worst case scenario so that you can remove your fear of it. Once you are no longer afraid of what might happen, you can try to get comfortable with the reality that you have to face right now.
What makes a person go online begging for help from total strangers, and then when someone tries to understand the problem, tries to understand why this stranger is publicly threatening to kill themselves, they turn on the would be helper and try to submerge them in their ire?
As I deleted all my comments from the thread that started this thought train moving and reported the post as a violation of the subreddit’s rules (what I should have done in the first place and will do the next time I see one of these kinds of posts there) I was reminded of this passage from Dune:
“Once on Caladan, I saw the body of a drowned fisherman recovered. He–“
“Drowned?” It was the stillsuit manufacturer’s daughter.
Paul hesitated, then: “Yes. Immersed in water until dead. Drowned.”
“What an interesting way to die,” she murmured.
Paul’s smile became brittle. He returned his attention to the banker. “The interesting thing about this man was the wounds on his shoulders –made by another fisherman’s claw-boots. This fisherman was one of several in a boat — a craft for traveling on water — that foundered . . . sank beneath the water. Another fisherman helping recover the body said he’d seen marks like this man’s wounds several times. They meant another drowning fisherman had tried to stand on this poor fellow’s shoulders in the attempt to reach up to the surface to reach air.”
“Why is this interesting?” the banker asked.
“Because of an observation made by my father at the time. He said the drowning man who climbs on your shoulders to save himself is understandable — except when you see it happen in the drawing room.” Paul hesitated just long enough for the banker to see the point coming, then “And, I should add, except when you see it at the dinner table.”
When you are drowning in depression, it will do you no good to stand on the shoulders of the swimmer next to you. You will both surely drown if you do that. This is why rescuers in actual water emergencies frequently have to wait for a drowning person to stop fighting the water before they can attempt to pull the victim to safety. A drowning person will drown you and themselves in their frantic attempts to stay up in the air. They don’t know what they are doing. A depressed person needs therapy, and solid, stable people around them. Not more depressives that will pull them down deeper into despair.
Had I not found aid in the form of disability payments back in 2005, I would have been dead in 2006. I had it all planned out. I just had to start the plan in motion and it would have worked flawlessly. Probably. I was drowning in depression, convinced that I had to keep working to have any value to the people around me. It took almost another decade for me to figure out that I had value that wasn’t calculated in dollar figures, something that a working person who is convinced that they must keep working to have a meaningful life can’t understand. Not really.
I know this because I was one of those people and I can see the train of thought that lead me from my deepest pit of despair to where I am now. But I’m still burdened with the same chronic illness that forced me out of work twenty years ago. I know this because any time I forget who and what I am and try to start back into my old ways the vertigo sets back in and I have to take a week off in order to recuperate. Just like I had to do every other week back in the bad old days when I thought force of will alone would see me through.
I cannot rescue another chronic illness sufferer if that person can’t understand how I’m still treading water all these years later and flings insults at the methods I employ in order to cope. Hopefully they will also survive long enough to see the error of their ways. I won’t know because I can’t save them and save myself at the same time. They’ll have to find someone with a firmer grasp on reality than I have. I have people who want to see me keep on living. I hope that they do too.
She was going to have to give up nursing in order to treat her Meniere’s if she had Meniere’s. She didn’t have vertigo, so I tried to explain to her that she probably was misdiagnosed and should seek a second opinion from a professional. She then scathingly informed me that she was a professional who damn well knew what was wrong with her. She had endolymphatic hydrops that she developed from exposure to a chemical (she never said what) and hydrops was Meniere’s. She said I needed to educate myself. She then attacked me for being on disability for 15 years, leeching off the government as she put it.
It isn’t Meniere’s if you know the cause. It isn’t Meniere’s if you don’t display the full spectrum of symptoms. It isn’t Meniere’s if you can cure it. I wish I didn’t have Meniere’s. What she has isn’t Meniere’s. What she did have was evidence that:
It has been said that he who is his own lawyer, is sure to have a fool for his client; and that he who is his own physician is equally sure to have a fool for his patient.
I woke up early Wednesday. 11:00 am. It was early since I hadn’t been asleep for even five hours yet at that point and it was the third night in a row that my sleep had been shorted. I was tired and I felt it, but that wasn’t all that was wrong.
I just felt wrong somehow. I made breakfast knowing that I would likely go to back to bed soon, and then I went upstairs to do some busywork. There was a dust storm in El Paso, the weather site I visited told me. It was a couple of hundred miles away, but there was definitely dust in the windy air here too. It was wrong, just wrong somehow.
The world kept coming unstuck. I’d think “I’m having vertigo” and then I’d check and the world wouldn’t really be spinning. It would want to spin, but not actually spin. It was a weird feeling.
After several hours of this The Wife came home from doing her busywork with friends and I decided to join her in the bedroom. When I got up from my desk I realized just how dizzy I really was. Walking downstairs was a conscious one step at a time procedure. The steps are never where they first appear when the dizziness gets set to ramp up into vertigo.
When I finally made it to the bedroom a few minutes later the world was actively spinning. “That’s just great.” I was almost relieved to be done waiting for it. I took Xanax and laid down at 5:30 pm, dedicatedly staring at the catbus and waiting for the spell to pass. It didn’t pass and I fell asleep instead. Fitful sleep that lasted for a good long time this time.
I woke up just now at 5:00 am on Thursday, almost twelve hours later. I missed dinner. I missed my WoW raid. I didn’t finish Wednesday chores. How was my day? I didn’t have a day. How was yours? Now it’s time to get the bins to the street before six so that the city will pick them up, and then I see if I can have real day today. Fingers crossed.
It’s afternoon, just got back from a walk. This is now the best day since the 10th of March (the last time I was out walking) It’s the best day since getting the jab (I love that word for being stuck with a needle. Fits perfectly) last Thursday. It will never cease to amaze me just how much of a difference getting out and stretching the legs will do for your attitude.
I suffered through vertigo again both Saturday and Sunday this past weekend. I spent all day today just trying to catch up on stuff I missed over the weekend. At least I got the laundry done. This turn to Spring will hopefully see a turn from the depressive trough I’ve been in for months. I’m trying not to see the weekend as a harbinger of anything negative for this year. It’s going to be sunshine and kittens 24/7. It’s just too bad I’m allergic to kittens.
Third day in a row. Taking Xanax for light vertigo and playing World of Warcraft slightly stoned. This is what the bad days are like. It beats worshipping at the porcelain altar for six hours at a stretch. I’ll take it.
January 26th – Finally it passes again. So close to the dizziness that persisted through most of December and early January that I almost thought it was the same bout of dizziness. Who knows? I don’t think so, but then I don’t know what caused that long stretch of dizziness either (still taking the iron) What I do know is that you can have my Xanax over my cold, dead body. You can have it over my cold, dead body, because taking it from me will kill me as surely as a drunken rock star chokes on his own vomit when he is so out of it that he (or she) doesn’t know which way is up. The difference is, I didn’t do this to myself. Nature did.
…But then nature made them musicians, artists, with all the baggage those labels entail. Maybe nature did it to them too.