Opening Hazard

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.

Ah, the good ol’ days.

Featured image: What I Learned About the Coronavirus World From Watching Zombie Flicks

Postscript

I’m not dead yet.

Monty Python – “Not Dead Yet” SceneAmazon

…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.

Crip Time

Crip time is this diagnosis of the exacting, you know, and punishing even, standards of economic time by which each human is measured as an index of our worth. That really is what is at stake here.

Sara Hendren (Crip Theory – Wikipedia)
SpotifyInquiring Mindsomny.fm
What Can a Body Do?: How We Meet the Built World

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.

madinasia.org

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.

Featured Image: MoMA

Long Haul COVID

spotifyVox – Unexplainable – The viral ghosts of long Covid

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.

Vox

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.

sciencedaily h/t to SGU #849

Going Deaf

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.

reddit

Drowning in Depression

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.”

Dune by Frank Herbert (1965) pg. 139

(a Reddit thread discussing what the scene means)

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.

Short Wave – How To Reach Out When Someone You Know May Be At Risk Of Suicide – April 5, 2021

Postscript

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.

quoteinvestigator.com

How Was Your Day?

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.

The Statler Brothers – Flowers On The Wall 1966
Postscript

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.

The BeatlesGood Day Sunshine (Remastered 2009)
March 29

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.

My Friend Xanax

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.

Asthma

“Go run and play.” She said. She always said that. She never understood how impossible that was, running and playing. Even short sprints would leave me breathless. when I was in elementary school, participating in my first field day, I tried running in all the races. I couldn’t finish most of them. When I came back in tears dejected and frustrated, the teachers tried to console me with a participation award. I still have it around here somewhere.

No one, especially not my mother, the “go run and play” voice in my head, ever thought to ask if I was having trouble breathing. Never in my life did anyone ask. I just assumed this was the way everyone felt while running. The feeling of slow asphyxiation, the inability to ever get enough oxygen into the blood.

I remember the time when running became a thing that everyone thought they should do. I listened incredulously to the descriptions of the runner’s high, wondering how anyone could ever get to that state of euphoria while slowly strangling to death. But I was intrigued by the idea, so I bought a pair of running shoes and some sweats, and tried running a few times just to check it out. Could I run long distances, at all? In all the times I’ve tried, I have never made it much further than a hundred yards, no matter what mindset that I started the run with. It simply was not possible for me to run long distances. I was never going to experience the runner’s high.

Bicycling was different. If you do the exercise correctly, bicycling puts you in the prone position. In a prone position you breath easier, and I could ride all day on reasonably flat ground if I needed to. Trying to ride uphill was a near-impossibility though, as I soon found out when I moved away from the flatlands of Kansas as a teenager.

Breathing is key. If you can’t breath well enough, you can’t do any of these things. I never understood this fact when I was younger. I just assumed that everyone faced the pain of their lungs being on fire all the time that they were exercising or competing. I simply wasn’t driven enough. Wasn’t motivated enough. Wasn’t good enough to compete.

That is where interest in competition stopped for me. I knew I couldn’t win, so I decided not to try. No sport that required physical stamina would ever be something I would excel at. That was me as a teenager and a young adult.

When I met the Wife, she infected me with a need for competition that I had never cultivated in myself. We tried playing softball on the team one of my architecture firms maintained. Between dysgraphia causing me to catch balls with my face almost as much as I caught them with my glove, and my restricted lung capacity keeping me from being able to sprint around the bases without needing to stop and catch my breath, I didn’t lead the roster of most valuable players on the team. To say the least.

I had to change allergists a few years back. The allergist that I had been going to retired, and the random choice that I was required to make put me into the hands of an allergy and asthma specialist. He immediately suspected that I had borderline asthma, and confirmed it with testing. Once again my mother’s indoctrination into the cult of Mary Baker Eddy had taken its toll. Had she been curious enough to go talk to doctors about her son’s weird breathing problems, I might have gotten treatment early enough that my lungs would have developed better.

We treated the Son’s borderline asthma when he was a baby. It was breathing the albuterol with him while giving him his treatment that made me wonder if perhaps I had similar problems. I few years later I no longer had to wonder about it. I’d like to officially thank the Church of Christ, Scientist for fucking up my life and the lives of my mother and her siblings and her children. Without their influence, I wouldn’t have had to watch my mother die from a treatable disease, with virtually the last words out of her mouth being “doctor’s don’t know anything.” As it turns out, they seem to know quite a bit.

Postscript

Don’t know what to think about this yet:

The preclinical results (in animal models) show that this vaccine induces the sustained production of antibodies specifically directed against IL-4 and IL-13. Indeed, six weeks after the first injection of the conjugate vaccine, 90% of the mice presented high levels of antibodies. Over one year after primary immunization, 60% of them still had antibodies capable of neutralizing IL-4 and IL-13 activity.

pasteur.fr

Anemic Dizziness

I’ve been dizzy for several weeks now, in an unbroken chain of dizziness. During this period of dizziness I had blood drawn for my semi-annual blood tests, tests that came back showing that I was anemic. I wasn’t anemic by much according to the normal ranges for iron in the blood; but still it was low enough that my doctor was concerned about it and thought to mention it to me.

I basically blew the concerns off at the time. I mean, anemia? Right? What is anemia? It means low levels of red blood cells in your blood. It wasn’t critical. It wasn’t like I was four pints low on blood and I really needed a transfusion (I’ve heard that reported by others who have had anemia over the years) I was a few points low on the percentages of iron in my blood in one test. I figured, no big deal, I’ll just start ingesting a bit more iron in my diet. I shifted to taking the Wife’s daily vitamin for a week or so (her’s has iron in it. Men generally don’t need iron supplementation, women do) but after that I went back to my same old Men’s One-A-Day that doesn’t have iron in it, and I forgot all about it.

Until today. Today, as I’m standing there with the world in a fog of dizziness around me, not actually spinning but always worried that the general dizziness might turn into vertigo, it suddenly occurred to me. Brain function. Oxygen carried by red blood cells. Red blood cells distinguished by their ability to carry oxygen because of the ability to bond with the iron that is in them (that is what makes them red after all) is it possible that this prolonged bout of dizziness is caused by the anemia and not the Meniere’s?

To answer this question I turned to Dr. Google, like most of us do these days. As usual, Dr. Google was not a useful source of information on the subject of anemia and related dizziness. This image is the summary that Dr. Google offered me for the search phrase dizziness low iron. See what is second on the list? It took a minute for the reality of the situation to sink home.

Dr. Google on dizziness low iron

Acupuncture. Acupuncture is second on the list of recommended treatments for dizziness. I was almost apoplectic with outrage while reading this summary. Acupuncture has no proven use for dizziness, and yet it is second on the list of what to do about dizziness from anemia. Why? Why is this on the list at all? Why does Dr. Google think that medicalnewstoday.com is a reliable medical news source? Why is this unknown resource cited in a summary that purports to offer solutions to a particular problem? Cited at the top of a list of other possible answers to the question.

I’d like to thank Dr. Google for putting the word anemia back in my vocabulary today (words keep disappearing on me when I’m dizzy like this) put the word back in my vocabulary list so that I can hone the question I want to ask, but seriously? Why is is this website quoted as a source? In Dr. Google’s defense, Healthline is the first resource offered on the page, but the clarification block appears directly under that resource. Healthline’s value as a resource is also questionable. I wouldn’t take their advice as being rock solid without checking facts in other places first. When you read symptoms off a list of symptoms and you start saying “yeah that sounds right” even though you haven’t been complaining about that particular symptom, it’s time to find a second resource.

Using the search phrase dizziness anemia proved to be even less revealing than the previous search phrase. The top resource on that results page was yet another poorly written questionable source that I wouldn’t trust to give me advice about which direction was North, much less give me advice on how to treat chronic health issues.

After a few hours of fruitless searching I decided to quit looking and simply treat the problem that I know exists and see if that helps. I already know I’m anemic because my general practitioner told me I was. I was anemic when this dizziness started. I’m going to approach the problem as if I was suffering from anemia, and simply start by taking some iron supplements to see if the dizziness recedes or not. I have also been listless and tired a lot lately. Maybe it is anemia after all? Stay tuned.


Several days later, after a few days of adding iron to my diet (The Wife’s supplement didn’t have iron in it contrary to my prior statement) I’m already starting to notice less dizziness. Which is good. I didn’t want to have to go back to the ear, nose and throat doctor and get steroids injected into my inner ear again.

I will only be adding iron to my diet for a few weeks at most. I don’t want to overdo it and cause other types of damage that can be caused by having too much iron. I’ve never suffered from anemia before. At least, no anemia that I know of. The doctor who told me I was anemic also told me that blood donation could not have caused the anemia, but I’m at a loss to explain why I would suddenly be anemic outside of the blood donation that I had just given the day previous to getting the blood tests done. I guess I will go back to him and get an order for another blood test and see if the anemia is still present, after I’ve finished my few weeks of iron inclusion.

Weather and allergies frequently mess with my vestibular system. These are a known triggers for Meniere’s in some people. I thought the dizziness was coming from weather and allergies, but then it lasted through several changes in both. I tried the vestibular therapy exercises, as I mentioned previously on the blog, and they helped for a few hours but the next day the dizziness would be back. This is a last-ditch effort. I did not want to take iron supplements because I know that iron can be quite toxic at high doses.

I don’t know what caused the dizziness and I won’t know, possibly ever. This is the problem with chronic illness and common complaints like dizziness. If the dizziness that I’ve had for a solid month goes away, and I get a blood test that shows the anemia is gone, I will have demonstrated correlation. An interesting set of facts that might be related. If I get extended dizziness several more times and each time taking iron makes it go away, I’ve demonstrated a possible causal link. At least for me.

Dizziness is one of the most common symptoms/complaints that doctors hear. Almost anything can cause it. Dizziness is not just one thing, either. It can be a mental fog. It can be a feeling of imbalance. It can be active rotation and when it is active rotation it should be referred to by its real name, vertigo or rotational vertigo. Every time I get a symptom these days I’m always wondering if it is Meniere’s or if my thinking it is Meniere’s means something more serious is going on and I’m missing it.

What I do know now is that next time I donate blood I will be sure to include more iron in my diet before and afterwards. I don’t want to do this again and blood donation is still my only explanation for the anemia. If I become anemic again even with these precautions, then I’ll get concerned.