Grandmother

I had the weirdest dream last night. When I’m having dizzy spells like I’ve been having all summer, I tend to have really strange dreams, and this one was a doozy.

I was in my maternal grandmother’s house. It was exactly how I remembered it. The lime green living room walls. The floral patterned couches that I used to lay on and trace the patterns with my fingers. When I looked up I noticed that grandmother was crying. I asked her what was wrong? Why was she so upset.

“I’m sorry Tony. We left you a world that was so broken and we never knew how badly we had broken it.”

I tried to comfort her. I got her to sit down and I hugged her. But I was only a small boy and so my arms wouldn’t go around her. I couldn’t reach her shoulder to rub it consolingly. I’m thinking to myself “why is she so huge? I’m not a child anymore.” and then I woke up. weird dream.

I’d like to think I won’t owe my children an apology for the world we leave them. Hope springs eternal.

Dust Allergy

The thing I’m most allergic to is household dust. Household dust? How are you supposed to survive when the thing your body generates every time you move is something that could potentially cause a severe allergic reaction?

Yesterday I was looking for something in the pantry. When I went to move stuff around in there, I noticed the floor probably hadn’t been swept under the shelving units for at least ten years or so. So I did what any normal person would do, I pulled the shelves out and started cleaning.

Then I noticed the dust billowing up off the floor. Crap! So I retreated and got my allergy medication taken, then got back to work finishing the task. When I went upstairs later to do the cardiac exercises that I’m supposed to do 3 to 5 times a week, I realized that I was rapidly starting to feel worse, even having taken a full course of allergy meds. Headache, dizziness, periods of light vertigo.

So it was time to break out the Xanax and then rinse my sinuses and wash the outside of my body to get all the remaining dust off. Then I had a bowl of chicken soup and went to bed early. Sixteen hours later I wake up. Still dizzy, still light vertigo, still pissed about all of the above.

Someone has to clean the house, and if that cleaning stirs up dust, that person cannot be me unless I’m wearing top of the line filtration gear. This needing to do things that I really shouldn’t be doing is going to drive me stark raving mad here soon. I wish I could afford to hire a maid. At least I’m getting better at writing while suffering from brain fog. Progress? Maybe.


Editors note: July 30, 2019. First day without near-active vertigo , constant dizziness, since writing this post. I went to the ENT yesterday. She couldn’t help me, but at least I know it isn’t an infection, or benign paroxysmal positional vertigo (treatment for which is mentioned here) it must be allergies or this is the way the destruction of my inner ear mechanisms occurs while I’m taking Betahistine.

…and today I feel great. For the first time in at least two weeks. Time to go make myself sweat doing the cardio I couldn’t do while nearly puking or stumbling off the treadmill. Fun!

Then four days later (approx.) the same dizziness returns. I have no idea what is causing this, and I hate just saying “Meniere’s” and forgetting it. That is how mild symptoms turn into buses that run over you.

The World Will Not be Better Without You

Kent Online

I ran across this article on one of the support groups I’m part of. I have a canned response that I give to medical professionals on this subject. When I go in for the frequent checkups that my chronic illness requires, there is always a mental health assessment form among the many other pages of questions to be answered. Mental health assessment forms that doctor’s offices hand out in a vain attempt to stem the numbers of suicides that occur among their patients. While I’m handing the paperwork in, I hold that page back and get their attention. Then I say,

“I can answer yes to all of these transparently worded suicide prevention questions that you ask, and yet I’m not inclined to take my own life right now.”

One of my doctors has heard the disclaimer so often that he heads me off with the comment “Yes, I know this doesn’t apply to you.” Regulations, you know. I can answer yes to all those prying questions about self-destructive behavior because experiencing chronic illness destroys the well-being of the person afflicted. It can and does destroy your feelings of self-worth to the point where suicide is something that you can contemplate dispassionately on virtually any clear-headed day.

“At least these fucking ears would stop ringing.”

But knowing this fact, that you are depressed due to health problems beyond your ability to control, and that you really don’t want to die right now, it’s just an option to contemplate in the unknown and unknowable future; this depth of self-knowledge removes the probability of taking your own life at the moment the questions are asked. The probability is removed because,

“Yeah this sucks but it ain’t the worst I’ve seen.”

It’s those moments when it is the worst that remain problematic. I know my worst moments. I’ve talked about them enough in the past. It’s those moments that I don’t think about how easy it would be to end it all. I try to think about something, anything else. In those moments I cling to those around me for dear life, because I know that they are the only things keeping me there in those moments.

May all of my fellow Menierians and all my brothers and sisters who suffer from chronic, invisible illnesses find comfort in those times of need. May all of us avoid his fate, if we can. Contact the lifeline if today is your worst day and you have nowhere else to turn. Don’t snuff the candle out and think the world is better without you. It isn’t.

A Deadly Belief

This is part three of a Meniere’s page I’m slowly editing together. Part one is here. Part two is here. This is tangential, but still part of the story.


Then there was the effect of Christian Science on my family. I’ve struggled with where and when to mention this little gem of understanding, because mentioning it is fraught with tons of angst and potential explosive feedback. But understanding how I got to 40 without a diagnosis of Meniere’s, how I’ve never been diagnosed with dysgraphia even though I have had all the symptoms of it for the entirety of my life is a direct result of my mother’s early childhood indoctrination into Christian Science. Because of this fact, Christian Science has to be discussed here as part of this story.

Christian Scientists aren’t scientists; they pray to Jesus to cure what ails them. Jesus is their science, and they exercise their science in prayer rooms across the US. They still do this all across America to this day. When a child dies from lack of medical care, and the state where that child dies cannot prosecute the child’s parents, the law that allows this was lobbied for by the followers of Mary Baker Eddy, the founder of Christian Science. My mom and her immediate family were members of this belief.

Her distrust of doctors and medicine lead directly to her demise February 9, 2018. One of the mantras she took to her grave was doctors don’t know anything. It was her most repeated comment over the last months of her life, as doctor after doctor told her she had cancer and needed chemotherapy. You couldn’t dissuade her of this or pretty much anything else she believed at any point in her life.

This is a hallmark of most of humanity, I have come to find out. If you think you can change the average person’s mind you simply don’t know what you are thinking. People survive as long as they do by believing things, and sticking to those beliefs. My mother survived to the age of 77 and raised four children to adulthood based on her doing exactly what she deemed best at the time, and you won’t convince someone who has lived successfully by their own judgement for 70 years and more that what they believe is wrong. So give that idea up now and save yourself the life-shortening frustration.

Christian Science. If you are a Christian Scientist you don’t take drugs. You don’t see doctors, and if that religious upbringing was all there was to my mother’s belief, I think she would probably have gotten over it eventually. However, over the course of her life she has been nearly killed by well-meaning doctors more than once. All her life she’d been told gibberish by people who didn’t have the sense to pour piss out of a boot with directions written on the bottom (not that she would ever utter such a low phrase. In her estimation) so she knew that people believed insane things and discounted what other people told her almost by rote. She knew what she knew, but that left her vulnerable to the things she thought she knows but was wrong about.

Mom knew the value of modern medicine and never hesitated to get me antibiotics to treat the frequent illnesses that I had as a child, but she never stopped believing that doctors were pulling a scam on the sick. It all had to be a scam, somehow. She was never clear on how or why, but it was a scam, she was sure of it.

She never stopped believing that people would get better on their own if they just lived a better life, ate better food, got the right kind of nutrition. It was the failure of this belief, that healthy living was all you needed to keep from getting cancer that killed her a decade early. Had she not had encounters with believing doctors who proposed treatments that proved near-fatal, treatments that were fatal to her mother. Treatments that decreased the quality of life for the patients she tended. Patients that died anyway. Had she not watched time and again as things were labeled bad be relabeled good with more study and more time. Had she had different experiences with the medical community, she might have said yes to the promising new treatment the doctors wanted to try. The same treatment that saved president Carter’s life. But she didn’t have those experiences, and so she didn’t get to live that extra decade.

Who should be blamed for that?

About That Lack of Posts. Meniere’s? “The Best Laid Plans” As the Saying Goes.

I woke up dizzy Monday. Dizzy, not vertiginous. With vertigo, the world spins. Or rather, with rotational vertigo, the world spins, generally in a horizontal direction (don’t ask me which way, because my brain will lock up) I took a bunch of drugs trying to make it better. Nothing made it better. Dizziness is (as I’ve said elsewhere) the most common complaint that doctors hear. It means completely different things to different people. This dizziness is a feeling of being on the verge of falling/fainting, pretty much with every step.

Tuesday I woke up, dizzy again. This time dizzy and with chest congestion. I had taken the CPAP mask off to answer the phone, and simply neglected to put it back on at about 8 am (trying to schedule appointments with mundanes means being clear and attempting to be coherent at 8 am when they return calls) so when I finally got out of bed at noon, I had a nice wheeze going and a tickle in the middle of my chest. Needless to say, I took a round of allergy drugs and my regular daily medications, put the mask back on and went back to sleep.

When I woke back up again, the tickle was gone, the dizziness was lessened and I wondered about the cause of the dizziness since the mask filters all my breathing air. I tried wearing a particulate mask around the house for awhile and that seemed to help, but then I had to talk on Discord for the guild raid that night, and the tickle and congestion returned.

Funny thing is, I can stick my finger in my left ear and trigger the inside out vision for a brief second or two. It makes the dizziness much worse, to the point of almost blacking out. The right ear, even though I have bilateral (both ears) Meniere’s, does nothing to my equilibrium. That is a puzzle.

Allergies? Barometric pressure? Meniere’s flaring up? I don’t think it’s the latter because the dizziness is wrong. I’ve already gone to the ENT once this month, so I’m visiting the GP today to see if it’s something he can figure out. If not it’s back to the ENT for another needle in the ear and the nasty taste of drugs in the back of my throat for two weeks. Fun. Fun. Fun.

…I mention all of this because I decided that this week was the week to try communicating with people, and I can tell that my writing is less than coherent. I’m hoping the above was coherent. Who knows? I won’t for at least a week. Also, I’m in the middle of reorganizing my website and my blog, as well as revisiting the wisdom of my presence on several social platforms and I will be leaving more than one of them, permanently. So I’m largely incommunicado and unwilling to compose text in my normal fashion because that has lead to a lot of time wasted trying to recover lost work when things go sideways. (see my last post) and what little conversation I am required to engage in is probably incoherent to at least one side of the conversation. Maybe even both. I’d really like to get away from the problems that started back in mid-August. This is getting old. Really old.


Editor’s note: November 8, 2018 – The spell finally seems to be passing, but the complete lack of change in the body politic of Texas has me in such a funk that I doubt I’ll be writing much of anything positive for awhile still. I have a few cutting polemics in mind, but the better angels of my nature may keep me from ever publishing them here. On the other hand, I’m about to go off on relatives on Facebook again, so the inner troll may also get access to the keyboard here. Stay tuned. 

First things first. Get an editor that won’t eat my drafts while I’m composing. When I get that all worked out, I will certainly write about that process. Writing about it is part of the process.

Equilibrium on the Equinox

What happens on September 22nd? I think to myself as I start looking through today’s history on Facebook. It’s bugging me. This day is important. There is an event that occurs today, what is it?

Obviously, it is the equinox. It took a bit of googling to turn the lights on, but finally, I had my answer. That is the significance of September 22nd. Equinox. Equal amounts of day and night across the globe.

Most years, this happens on either Sept. 22 or 23. However, every once in a while, the autumn equinox can occur on Sept. 21 or 24. This happens because the length of a calendar year (365 days) is not equal to the time it takes for Earth to travel around the sun (365.25 days). To make up for this inconsistency, people have observed “leap years” for the last two millennia. By adding a “leap day” (Feb. 29) to the calendar every four years, we have managed to keep our seasons more or less consistent from year to year.

The last time the autumnal equinox fell on Sept. 21 was over a thousand years ago, and the last Sept. 24 equinox was in 1931, according to timeanddate.com. While it’s been a long time since the equinox occurred on Sept. 21, we can expect to see it happen twice in the next century, first in 2092 and then in 2096. The next Sept. 24 equinox will be in the year 2303. (Keep in mind that these dates are based on Universal Time, so some time zones may not experience these equinoxes on the dates listed here.)

Space.com Autumnal Equinox Not the Same Day Every Year

Equinox. Equilibrium. Balance. I’ve been feeling pretty unequal for about a month now. Unbalanced. The Meniere’s has been particularly burdensome since sometime in mid-august when the left ear started to flare up again. There has been a near-constant feeling of pressure in the ear for the last month. The pressure started a bit early this year for me, and it has lasted longer and been more annoying. But then this is the beginning of fall and it’s accompanying seasonal allergies. I just got my annual symptoms a little early this year, I guess.

Along with the pressure have been long bouts of hyperacusis and/or painful tinnitus. I can’t hear, I’m uncomfortable, I feel ill as if I have an infection. I went to the ENT yesterday just to reassure myself that I wasn’t actually ill. Nope. Not ill, just Meniere’s. This feeling of malaise has lasted for a solid month, almost without respite.

Which is why there is a dog hugging a goat at the top of this post. Denied physical balance I will seek mental balance. Calmness where I can find it. Lacking medical treatment to alleviate the symptoms of Meniere’s, I will simply endure it for as long as it takes. I see a lot of World of Warcraft in my future.


Editor’s note: October 22, 2018. So I woke up this afternoon with vertigo again. This is the third day in a row that I have woken up with rotational vertigo. The third day in a row where I wake up and quickly drug myself. Take meclizine. Add Xanax if necessary. Stare at the screen in front of me for hours at a time. Try not to shift the focus of my vision because that always causes a little bit of spin until the new focus point is established. Lovely. Just lovely. This bout of vertigo is just the latest part of the symptomatic spell that started mid-August for me. This makes it a pretty solid two months of being severely symptomatic.

The vertigo spell finally ended on Wednesday the 25th. I celebrated by getting out of the house for the first time in a week and treating myself to an All Star Special at the Waffle House. Since Austin has established a Boil-Water Mandate in response to the record breaking rainfall on the Llano Estacado, and the subsequent flooding of the highland lakes including Lake Travis, the lake that provides Austin’s water, the choice of places to go was rather limited. When a restaurant can’t use the water that comes out of the taps to make the food they sell, most restaurants will simply close when there is no visible demand for their services.

But the Waffle House is always open if they can turn the lights on and fire up the griddle. That is why there is a Waffle House index for disasters. It was a yellow day, plastic tableware and a limited menu, but I would have gone to the Waffle House anyway. Love the coffee, even if it has to be decaf these days. I have to have hashbrowns and eggs over easy, too. My goto breakfast for those days when just waking up is a good thing.

Being symptomatic, when you have a chronic illness like Meniere’s, is not a contest to be won. You don’t get brownie points for suffering more than the next guy, because the next guy’s goal is the same as yours. That goal is getting through the bad days so that you can enjoy the good ones. If your good days don’t happen often enough, maybe you should change the things you are doing, or the treatments you are using, and see if you can’t get yourself more good days. Since there is no cure, and you won’t die from it (ergo chronic illness) the only metric available to you is the number of days in a row where you wake up glad to still be here. Today was one of those days. I had waffles, and I got out of the house. Looking forward to the next good day, now. If only the pressure in the left ear would ease off. That would be great. 

The Human Barometer on Father’s Day

I woke up this morning spinning and decided to go for a walk anyway. Second day in a row greeted with vertigo, a vertigo spell that began at about 3am while I was asleep, two nights ago. I had plans for yesterday that had to be canceled. That is par for the course. Today is Father’s day and I have plans for today as well. We’ll see if they happen or not after I get cleaned up from the walk.

I don’t know what has caused this three-day struggle with vertigo. It could just be the weather causing it. It’s Texas, the weather is always changing. If you don’t like the weather here, wait five minutes, except in August when you wish it would change but it just stays hot for weeks on end. The Wife frequently refers to me as her human barometer. Every time a front moves through, I’m sure to notice first, sometimes even before the cloud cover changes.

I’ve been going to physical therapy for about a year now. The exercises have strengthened some muscles and reduced some physical pain. They have helped me regain some balance, but nothing has an effect on rotational vertigo once it starts aside from single-minded determination or medication. I can sometimes force active vertigo to stop if I can afford to lay still and stare at a fixed point in space for about an hour; but I’m left with a sense of disconnection, of mild dizziness, even if I manage to get the rotation to stop. As I managed to get it to stop this morning.

A lack of sleep can trigger something akin to the vertigo I experience with Meniere’s. It isn’t quite the same, and I know the difference even if the average observer or sufferer can’t tell the difference. I’ve been sleeping fine, so it isn’t a lack of sleep.

Every one of the simple things I do each day takes longer to do and requires more effort just because of the conflicting signals I get from broken and erratically firing balance mechanisms. Just writing these few simple sentences taxes my abilities to do… anything.

But I am determined. I will get back up out of this chair and take my shower. I will go to a movie today if I have to go medicated. Going to sit and at least pretend to listen to family and friends because that’s what I want to do. Catch ya’ll on the other side.

Facebook status backdated to the blog.

Dysgraphia and Meniere’s

Lera Boroditsky|TEDWomen 2017 – How language shapes the way we thinkFacebook

I was telling my Physical Therapist about this subject at my last PT appointment. I used to be great at orientation. As a teenager, I loved maps, but I almost never needed one. I could find my way around quite easily by simply knowing which way the road went. I could build entire architecture projects in my head, a crucially important visualization technique that allowed me to understand how the various parts of any of the assemblies I worked with related to each other. I believe this was an outgrowth of my need to synthesize data without being able to write anything down, a side effect of dysgraphia.

Meniere’s has taken this away from me. The need to reinvent myself from the ground up with the systemic demands that a malfunctioning balance mechanism places on me included in the mix, has left me incapable of mapping direction any longer. I simply don’t have the free cognitive space within which to build complex structures including being able to remember where I’m going without a mapping program telling me which way I should go. I get lost quite easily now, apparently like most English speakers do according to the data discussed in the TED talk. Maybe it is time to learn a second language, one with ordinate directions built into it. Maybe that would help?

Facebook

Don’t Pray For Me.

Does anyone else miss church Sunday after Sunday and feel guilty about it? My sleep cycle is so messed up; my days and nights are mixed up. Therefore, I can’t seem to wake up or get up for church on just three or four hours sleep. It’s been four Sundays now.

Barbara GrahamAugust 6 at 4:57pm

That was her question. An open question to a private group. Do I miss church and feel guilty about it? No. No, I’ve never felt guilty about missing church. I was never a church goer and not much of a believer either. What little belief I harbored flew away with chronic illness. Not having a fellowship to attend to is a problem with sufferers like me, though. Work was always my fellowship. For awhile I played MMOs and that gave me people to talk to but the last few years have left me mostly alone again. It’s not a healthy way to live.

This was her response to my comment,

I’ll pray that you’ll come to know God, and that you won’t blame him for your illness. He loves you. I hope you will find a Godly fellowship that can and will comfort you.

No offense, but I don’t hate god. I don’t hate nature either, and nature is why this affliction exists. Not gods or demons. Nature created it and we creatures of nature will have to figure out how to cure it, and we creatures of nature will have to learn how to cope with it in the meantime. I have been an atheist and a freethinker for most of my adult life. Gods and demons represent nothing more than the chimera of wishful thinking in the reality that I occupy.

Fellowship does not require god or church. Fellowship is to be found anywhere like-minded people are found. The Facebook group I posted this in felt like a place of fellowship, and I was thankful for it while it lasted.

Her question reminded me of just how hopeless and alone I felt back in 2006, back before Facebook was the monolith it is now, a place where any fractional group of like-minded people can find fellowship if they only go looking. It reminded me of the day a friend of mine convinced me to play World of Warcraft and probably saved my life in the process.

RAnt(hony)-ings

 Fellowship is where you find it.

The belief that “flew away” when I lost my faith was a belief in the justness of life. That sickness could be avoided by clean living. That miracle cures were possible. That success came to those who worked hard and saved for the future. All of these things are lies we tell ourselves in order to feel better about why we are doing better than the people around us. Why we are doing better, until the day that we aren’t.

We need each other in ways that most Americans are uncomfortable admitting. This is another thing that makes me sad. The resolute self-sufficiency, the dream of the average American, is a chimera of prideful loneliness. That was one hard lesson to learn for me.


Editor’s note. I left that Meniere’s group years ago now (5/10/2020) The predominance of woo in the group and the blind faith of its promoters finally made me feel sick to even be there anymore. I’ve since gone back to playing MMOs for the feeling of fellowship it brings. It is about the only reason I’m still playing World of Warcraft.