For my siblings
Continue reading “Adverse Childhood Experiences”
For my siblings
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)
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
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
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.quoteinvestigator.com
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.
“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.
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
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.
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.
I had been seeing a Physical Therapist for years before the time of COVID. I have a recurring issue with the lower back, a common complaint among older people, come to find out. I’ve also messed up my neck and shoulders in car accidents over the years, so I have plenty of things to work out with my physical therapist. Or did have before the time of COVID. I haven’t been back to Symmetry Physical Therapy since before March of 2020, because as painful as my joint and muscle problems are, they pale in comparison to the kinds of problems catching COVID would mean to someone like me.
Back in 2019, when the lack of plague allowed me to leave my house for things other than the essentials, I just happened to be at my Physical Therapy appointment when I mentioned that I was having recurring problems with minor vertigo and dizziness that lasted for weeks or months at a time. He got a quizzical look at that point asked me if I had ever tried any vestibular training exercises.
I had never even heard of vestibular training before, much less tried any of the exercises. He then demonstrated a few of them for me and had me work through them. I don’t know that they had any positive effect, but the knowledge that there was PT for my vestibular problems started me on a mission to find out more about the subject.
After mentioning the subject to my Ear, Nose and Throat doctor (ENT) on my next visit (she was mortified that we had never discussed the subject before) She gave me a referral for and I went to see the specialists over at 360 Balance, which just happened to be the people that my PT had been to a seminar with and had put the bug in his ear about retraining the vestibular system after injuries like the ones that Meniere’s inflicts on sufferers.
Over the course of the next six months or so we set up a set of exercises that addressed the issues that arise from the inner ear damage that Meniere’s causes. The exercises did, in fact, stop the nagging dizziness problems that I had been experiencing all that summer of 2019, and I have not had a recurrence of those symptoms since then. Did not have them again until a few days ago.
I’ve been slacking off my exercise regimen lately. The allergens outside the house have kept me sequestered indoors more often, and even the little bit of pollen and dust that get into the house are enough to make me feel like I’ve got a permanent head and chest infection. A feeling that can persist for weeks on end. Starting sometime last week I started to feel like I was heading into another bout of vertigo, so I started taking my meds in response. I’ve managed to avoid worshipping at the porcelain altar so far (knock on wood) but I have had that nagging bit of dizziness and nausea that comes along with it that has persisted for almost the whole week since I first noticed the warning of oncoming vertigo.
So today I decided it was time to break out the PT routines and see if I was going to finally worship the god of the toilet bowl or if I was going to stop feeling this stupid constant dizziness. The results are mixed. I do feel slightly less dizzy just sitting here typing. Any kind of movement does make the dizziness worse though. There is something different about the way my inner ears are working at the moment. I can determine that much. I don’t think I’m quite through the woods with this re-arrangement that my vestibular system is going through.
At least I can sit here and type words without feeling like the room is going to take off spinning like a top. That is a good thing. I think I will go walk the dog once I’m finished writing (I did) but in the meantime I’ll outline the exercises the therapist has me doing to help ease the dizziness.
The hard part is making yourself do these things every other day or so. You feel fine and you think I have better things to do, so you don’t do the exercises that day. Before you know it a month has passed and you wake up dizzy for no apparent reason. Then you have to get back on the bandwagon and deal with the dizziness and the nausea until the exercises have the intended effect and you start to feel better. Now I’ve done my exercises and walked the dog. Time to reward myself with some more video gaming!
For the last month, it’s been really bad. I’ve missed two raid nights in a row due to illness, the first two in a really long time. I’ve been fighting with near constant constipation for weeks. Yesterday I spent all day on the toilet with diarrhea. I haven’t talked about my Irritable Bowel Syndrome (with Constipation, making it IBS-C) diagnosis yet largely because it is too embarrassing to talk about bodily functions like that. Still, it is getting so bad that I’m going to have to do research on the subject so I will probably write something to codify what I find out about it in the coming months.
In the meantime I combat the symtoms of IBS-C at the same time as I combat the symptoms of my other chronic illnesses. I’ve had brief bouts of vertigo over the last three weeks, the worst of which started after the last struggle with constipation.
Sunday I woke up dizzy. My head was ringing so loud from tinnitus that I felt like I was under attack. I kept holding my head down trying to escape the noise and the pressure, looking over the tops of my glasses at everything and wondering why it all looked so blurry. I had nausea accompanying the nearly unexperienced session of diarrhea, so yesterday was a fun day. I did get nearly finished playing Horizon: Zero Dawn, at least.
I’ve joked for years with the Wife about wanting to have diarrhea because constipation is so uncomfortable and mine seems to never end, especially in these last few years. At least then my experiences in the bathroom would be different. After my marathon running to and from the bathroom yesterday, I can honestly say that I don’t look forward to a repeat of that experience any time soon.
At 1:39 AM this morning the pressure changed in my head. I no longer felt like my brain was being squeezed between my ears on both sides. For the first time in at least 24 hours, the pressure was off. The tinnitus changed pitch as well. Now I just feel like I’m going to faint.
This chronic illness crap is for the birds. Listen, existence. Pick one condition and stick to that one condition each day, please. I can’t take all the changing of things you are going to punish me with each day. One at a time. Take a number.
I’m getting these weird muscle spasms in my feet. The muscles in the tops and sides of my feet will lock up and pull my toes into strange-looking contortions.
I have no idea what is causing this. It could just be exercise. I used to get charley horses in the calves of my legs after riding my bike all day. I would also periodically get them after long walks. When I was in cardiac rehab the nurses insisted we stretch after each exercise session. That did seem to cut down on the muscle pain afterwards, and so I’ve kept doing the stretches since then. They seem to help. Maybe I should stretch the muscles in my feet as well? That does seem to help relax them afterwards.
It’s all just so damned weird, this getting old crap. Pains in places I didn’t know existed until I was over fifty.
I’ve modified the quadriceps stretch that I’m doing and grabbing the area just above my toes instead of the ankle when stretching. Maybe that will help.
This was the first post written completely in the WordPress mobile interface. Spelling errors are the interfaces fault (damned autocorrect!) I have now fixed those while re-editing on the desktop.