If I could be you, if you could be me for just one hour.Joe South
If we could find a way to get inside each other’s mind.
If you could see you through my eyes instead of your ego.
I believe you’d be surprised to see that you’ve been blind.
It’ll all be fine.
That’s what they always say. Medical professionals. They’re always keen to reassure their patients that all will be well. They don’t want the patient to freak out and do anything crazy like killing themselves or canceling the procedure out of fear of the procedure. That is so not me; and I am way, way beyond the ability for comforting words to assuage any fears or disquiet.
Nope, I’m already certain that the end has come. I’m gonna die on the table. That’s the worst possible outcome. The next most likely outcome is that I’m going to wake up with a zipper chest like so many of my relatives have. Of course, I don’t tell anyone else that, not even the Wife. At least I don’t say that in those specific words. The Wife knows my mental acrobatics. She helpfully exclaims to the cardiologists nursing staff,
See what I have to put up with?
I know my own genetic history. I know what is in store for me because it is what happened to my direct genetic ancestors. My maternal grandfather had a heart attack when he was about my age. They cracked his chest open and sewed six bypass arteries into his heart in order to keep him alive. The procedure was successful. He lived for another thirty years before his gut killed him. When I started getting that weird sensation in my chest, I knew what that feeling meant, I just couldn’t jump to conclusions about what it was. No, I had to go through the experts and ge their opinions. I could have been wrong, but I wasn’t wrong. This time.
The feeling? It was like two solid objects rubbing against each other in the area around my heart. I’d never felt anything quite like it before in my life. After the sensation repeated itself several times during exercise, I decided I probably should take it seriously. So I did. I cancelled the physical therapy appointment I had the next day and booked an appointment with my cardiologist for as soon as he could see me.
He’s the one who offered the platitude it’ll be fine after saying the word angiogram and then watching me pale. What he didn’t know was that I have had nightmares about things crawling through my veins for most of my life. it’s part of my fear of needles and why I nearly faint every time someone sticks me with something. An angiogram is exactly that fear come to life.
I cringed every time an older relative would go in for one of the procedures. The Wife’s foster father had one done back in the dark ages, back in the 1980’s when an angiogram was still experimental. His was the first one I had ever heard of being done. They went in through his groin. They went in through that artery in the thigh that if cut you can bleed out in a matter of seconds. Not minutes, seconds. That artery. The femoral artery.
The catheter that they introduce into the blood system through the artery allows them to run a camera up through your arteries to study blockage from inside your body, and they can use it to introduce dye into your blood system, near the heart, so that they can use x ray imaging to study blockages. Which is what they wanted me to agree to. We’re going to slice open an artery and run tubes through your bloodstream. But don’t worry, we do this all the time.
They don’t know that worry is what I do eighteen hours a day, every day. If I’m not worrying about something, then I’m probably not actively thinking at the moment. I even worry when I dream. This is why driving a car every day of a working life is a special kind of torture for me. Anything more than a half-hour of driving, and I’m already worrying a hole in my stomach. I gave myself an ulcer inside of six months when I briefly flirted with driving for a living, bringing to an early end any kind of career driving trucks or test cars.
Over the course of the next week, while waiting for the procedure to happen, I say my goodbyes to everyone and make sure my karmic debt is paid off. I don’t want to be surprised in a potential next life by being reborn as a cockroach or anything. Just covering my bets. When the day finally arrives I’m under so much stress that if you scared me I would probably have a heart attack on the spot. That’s me trying not to worry.
Luckily I wasn’t going to be awake for the procedure. I made sure of that before agreeing to it. No, I do not want to be awake. I want the good drugs. The kind of drugs that keep you from remembering anything. I definitely do not want to be reliving the memory of crap crawling through my veins when I go to sleep for the rest of my life, if there is a rest of my life. Knock me out, or as close to out as I can get and still be responsive to commands or questions.
The doctor showed up early. He checked my wrist to see if it was large enough to get into easily. He was planning on accessing the radial artery rather than the femoral artery. I was initially thrilled at the notion that I wouldn’t have blood shooting out of the artery next to my junk the first time I went to the bathroom after the procedure. Then he left the room to allow the prep nurse to get to work. They prepared both the femoral artery area in the groin (so much hair!) and the right wrist as possible surgery locations. Had I known they would need to shave my groin anyway, I could have used the trimmers on it beforehand. Manscaping is a foreign concept to me. If hair grows somewhere on my body (on your body, even) it probably grows there for a reason. I see little need to trim hair that no one sees but me and the Wife. If she doesn’t like the hair, it usually gets snatched out by the roots anyway.
Talking to the surgery nurses is the last thing I remember before the procedure. I remember that both arms were strapped down (we don’t want you moving. Yes, I understand) The surgical shields were put in place. They were cold, but in place. The nurse said they do these kinds of procedures eight times a day on a normal day. They wouldn’t be doing eight of them on that day because the cardiologist I had been referred to had already dealt with two emergency procedures before he got to me in the mid-afternoon, and I had been scheduled as the first cardiogram of the morning when I walked in that day. He’s a busy guy. He earns his pay, without a doubt. He definitely earned it working on me that day.
The good drugs started when the doctor entered the surgery and verified everything I’d agreed to for about the fourth or fifth time (the thoroughness of modern medical procedure is reassuring if slightly tedious) and I don’t remember much after that. I remember the imaging system suspended over my chest like the upper hammer in a forging hammer press. I remember voices, but not words. I do vaguely remember something rounding the corner in my shoulder at one point, but I definitely do not remember the amount of work they had to do once they had done the initial scan.
…because it was as bad as I imagined it was. I didn’t die, so the worst outcome was averted. They didn’t have to crack my chest, something that would have been required had I been undergoing the procedure even ten years ago. Second worst outcome avoided by simply being born in the place and time that I was. No open heart surgery. Just three stents. Three stents, in three different arteries, and then the second set of tests to make sure that blood flow was restored to the blood starved areas of my heart.
What would have been weeks of bed rest and a lengthy hospital stay reduced to overnight observation and three months of cardiac rehabilitation. I’m a big fan of science-based modern medicine. It has once again kept me alive to see another day. From that perspective, what is there not to like about it?
I start remembering things after I’ve been in the recovery room for a bit. I remember the Wife’s usual amusement at my slowly dwindling confusion. I remember the cardiologist (now my favorite person in the world) visiting to let me know what they found while crawling through my arteries. He also let me know that I needed to stay for observation for at least a day to make sure that there were no complications. I also remember sitting in the recovery room until they had a hospital room ready for me, sitting there waiting until the cleaning staff was impatiently waiting for me to leave so they could clean up and shut down the surgery wing for the day. At least I had Looney Tunes to keep me company.
The pressure bandage was removed from my wrist at some point during the wait, and then there was a brief panic while I bled through quite a bit of gauze before the nurses got the bleeding to stop. Nurses pressing on the fresh surgery site to stop the bleeding, that was the most intense pain I endured that day. A mercifully brief pain considering the amount of pain that open heart surgery entails. Pain for months on end.
I could bitch about the inability to get my betahistine cleared through the hospital administration while I was laid up at the hospital for the night, but that seems pretty trivial in the scheme of things. We’ll just pretend I didn’t take the betahistine anyway because that would be against the rules. Did you know you aren’t allowed to bring your own drugs into the hospital? It was news to me. If you have drugs that aren’t available in the US unless they are compounded, you probably should get your drugs approved by the hospital you might be staying in before you find yourself stuck there with no treatment for your weird diseases. It will save you the frustration. In my case, it would have kept me from requesting a Xanax from the staff in order to keep the vertigo at bay. They didn’t want to give it to me, but I convinced them they didn’t want to see a full blown drop attack in the middle of the night. Really, I’m not complaining, I’m just a problem patient. Ask the Wife.
The only real surprise I experienced post-recovery was that I didn’t expect to be one-handed for such an extended period of time. Had I realized that the bruising would hang around for as long as it did, I would have told them to go in through the groin. I would have missed a wedding anyway, as it turned out (thunderstorms will do that) But I could have done everything else I normally do while laid up in bed for forty-eight hours. Not having two hands meant I missed raiding in World of Warcraft for two weeks. But the worst part was not writing. Not writing much of anything for nearly three weeks. Slow torture for anyone who loves to write. As I said previously, I watched a lot of television.
This brings us to today in this little story. Today, where I’m stuck in the near-endless repetition of cardiac rehab three times a week. Exercising while wearing a heart monitor with nurses always hovering nearby. Me and a whole lot of people twenty years my senior sweating as a group and wishing we could be somewhere else. I’m beginning to understand what it means to be handed the short end of the genetic stick now. I hope to survive my genetic handicaps long enough to see a crispr application that will fix what is ailing me, whatever that is.
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?
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.
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.
So I woke up this afternoon with vertigo again. This is the third day in a row (10/22/2018) 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.
|David Gerrold on Facebook|
All of my friends thought scaring me was funny. This has been true for as long as I can remember. Because they told me scaring people was funny, I started scaring people to see if it was funny. Weirdly enough, it was funny. It was funny when someone else other than me danced around like a stroke/heart attack victim.
I hate horror movies. The Wife has worked on close to ten horror movies now, so I have learned to deal with light horror in order to watch what she has been working on. At least appear to watch it, enough to be able to appreciate the art that goes into making a horror film. I still have nightmares from watching The Ring a decade ago, so I don’t do extreme horror anymore. The Wife and Son go watch horror movies together now, I stay home and play World of Warcraft with The Daughter.
But when I was a teen, all my friends loved horror movies. When they would watch horror films, I’d try to humor them and watch with them. It never worked out well because they knew I was jumpscare prone and so would do things like grab my leg when say, Jason came up out of the water in Friday the 13th. They still laugh about that one.
The first time I found out there was a thing like jumpscare videos was back in the early days of the internet. Some forgotten website challenged you to study some photograph of a typical dining room and try to figure out what didn’t belong there. At some set frame in the video two or three frames of the screaming face showed up and screamed at you, from an image that you had been told was single frame NOT a video. Everyone knows MM GIF now, but back then it was a new thing.
When that face popped up I think I blacked out. The next thing I remember, I was across the room climbing up on the desk to get away from whatever it was. The sad part was, I still thought it was funny and showed it to my kids. The thing that broke me of enacting jumpscares was discovering I was related to someone with anxiety issues, and having to condition myself not to scare them. This revealed anxiety issues in myself that I never realized were there before.
There is a vicious child somewhere in the lizard brain that wants to scare people. I don’t know why it wants to scare people, but it might be missing that dopamine fix of being terrified itself. There was some part of me that was terrified by Star Trek as a child. The salt monster really gave me a fright. I was terrified of the crawling hand for years after watching that film one Saturday or Sunday afternoon. I can still picture the hands crawling toward me if I try. I had nightmares about talking possessed dolls long before Chucky was a thing because some grade school friend insisted that some show he saw with a possessed doll in it was real. As if anything filmed is real, and not merely the POV of the cameraman. Most Science Fiction still terrifies me on some level, but I keep coming back to it for the thrill. For the unknown, the unthought of, the beyond comprehension.
Jumpscares are cheap entertainment by comparison. The people who make those things should take up bungee jumping or skydiving. Platform diving. Stand a hundred feet above the water and jump in, like I have. Before I knew how dangerous that was. Those are real thrills. If you are into jumpscares, scaring other people, turn off the computer and don’t come back till you’ve got your adrenaline fix in. The rest of us will thank you for it.
Overheard in a cigar shop:
Customer – “I’ve smoked cigars for years and have always inhaled. You get the full flavor that way.”
Shop – “The taste buds aren’t in your lungs ya know.”
Smoking is not about taste. It’s not about the taste of burning tobacco leaves in your mouth; a taste which, to the uninitiated, is so disgusting that it makes you want to retch. Contrary to most romantic visions of why we engage in the vices we engage in, we don’t do it for the taste. We don’t drink wine for the fruity high notes. Or rather, most people engaging in a vice do not break down their vices in this way. Tobacco is a nicotine creator, and nicotine is a drug. A cigar is a nicotine delivery system. Nicotine is best absorbed by the lungs, not the sinuses and not the linings of the mouth.
To misquote Freud “Sometimes a cigar is just a cigar.” All of the romanticism aside, nicotine is what you get from smoking, chewing, ingesting tobacco. And, yes I know, this approach to vices means that wine is there just for the buzz. Wine is an alcohol delivery system, this is why I prefer my wine distilled. If I’m just wanting to catch a buzz, why not shortcut the process? What I am trying to point out here is that, if the man overheard in a cigar shop just wants more nicotine while smoking his cigars, let him get it. It doesn’t matter in the end how he gets it.
Flavor isn’t in the mouth. Flavor comes more from the nose. You have to let the vapor of what you are consuming rise up into the sinuses to get the full flavor. Cigar smokers call this retrohaling. My father blew smoke out through his nose quite frequently while smoking cigarettes. I never could get the hang of that, but deep lung breathing that first cigarette in the morning definitely got a head buzz going, every time I did it. These are the kinds of things you can do when your mucus membranes are deadened by thirty years of smoking.
But you do have to get the smoke/aerosolized alcohol/chocolate, etcetera into the back of the mouth and top of the throat to get the full flavor of whatever it is you are consuming. Knowing this is one of the perks of insisting on cold, hard facts. Research has instructed me on how I should consume things for the best effect. Listening to others. Learning from their failures. Learning from their successes. Reading as widely as possible.
This is also why I know why I can’t taste anything most of the time. Clogged sinuses. I really need to find a place without allergens to live.
I hear you asking what about cancer? out there in the darkness somewhere. Yes, you. I hear you. Let me put your concerns about cancer to rest; you will get cancer eventually. The only way to avoid getting cancer is to die before it shows up. But what about lung cancer? Yes, smoking leads to lung cancer in people who are susceptible to that mutation in the cells of the lungs. Mouth cancer is even worse and you can get that from ingesting any tobacco product or drinking alcohol. You can quibble over percentages of risk, but not inhaling smoke into the lungs doesn’t protect you from cancer, even of the lungs. In the end, just living will give you cancer. The longer you live, the more certain it is to happen. It is in the nature of cell division itself for that process of division to go astray. Go astray and lead to cancer, eventually. It is all just a matter of time.
We don’t do recreational drugs based on the health risks, dear reader. If we did we’d all be smoking weed all the time and certainly not drinking alcohol or smoking tobacco. We would be smoking marijuana/MJ/reefer/weed because smoking that plant is an essentially harmless recreational pastime with little to no negative side effects in adults. No negative side effects aside from making smoking cigarettes look more harmless than it is by comparison.
I was a smoker for many years. I smoked weed and I smoked cigarettes and I would smoke a cigar if you handed one to me. I wasn’t picky and I didn’t worry about illness because like all young people I was immortal. I was ten foot tall and bulletproof until the day I wasn’t. Until the day I realized that I got winded more easily. Couldn’t hold my breath underwater like I used to. Couldn’t do a lot of things the way I used to. So I quit smoking. I quit smoking anything, altogether.
I quit smoking weed easily, simply because I wanted to. I found no further use for the pastime, so I quit. However, quitting tobacco smoking took six or seven years. Quitting my physical nicotine addiction took patience and planning and the deaths of multiple loved ones before I could finally give it up. It required the births of my children. Quitting smoking required that I learn REBT therapy and apply it to the activity of smoking. Quitting smoking is harder than quitting heroin to pull off.
How did I apply REBT? I would think of the smell that an empty bar has in the morning when you show up to clean it. I performed this mental exercise every time I craved a cigarette, especially when I ended up smoking one. I would wilfully summon the acrid, acidic smell of alcohol, vomit and old smoke that hits you in the face when you open the doors to a bar after a heavy party night, and I would do that while I was actively smoking a new cigarette. I kept doing it until I felt ill when I thought about smoking. Then the cravings stopped. After a three pack a day habit infused into my blood as a child, a habit extended by me as a adult finally came to an end, I felt much better. Like I was breathing, really breathing, for the first time.
My second experiment with linking smells to behaviors I wanted to change has not gone nearly as well as the smoking cessation practice did. Linking the taste of french fries to the smell of a grease trap has not gotten me to quit eating fried potatoes yet. That is still a work in progress. A work in progress that might be more successful if fried potatoes didn’t taste so damn good and I wasn’t so hungry all the freaking time. Nicotine can help with that desire to be eating all the time, and being overweight carries its own risks. More risks than ingesting nicotine? Depends on your genetics.
Insist on cold, hard facts. Relish in them. Nicotine is the drug being delivered. Alcohol is the drug being delivered. That is why we engage in those pastimes, to ingest the drugs in question. When you are doing that, make sure that you properly inhale the smoke. Aerate the distilled spirits when sipped. Allow the chocolate to melt and linger on the tongue before swallowing. You’ll enjoy your vices more, which is kinda the point in having vices.
A tip o’ the hat (h/t) is due for The Skeptic’s Guide to the Universe on Facebook. It is because of them that I drug this reedited series of comments, insights and further thoughts out of my drafts bin and published it. Without their social media editor’s willingness to republish spurious data on a subject near and dear to my heart (nicotine therapy in the form of vaping) I wouldn’t have bothered to kraft this bit of business into a shape that could be published. Thanks, I guess?
So I’m finally feeling almost normal after our trip to Chicago. The day after we returned home, the sore throat that had been bugging me in Illinois turned into a full-blown sinus infection complete with glaring red pink-eye. This prompted a hasty trip to my immunologist and a series of antibiotics. I finished the ten day course of antibiotics on Wednesday, and had my first physical therapy session in three weeks on Thursday. I was bushed after the PT, but that was only part of the problems that surfaced this week.
Monday morning was the follow-up for the 90 day Betahistine (Serc) test that my ENT and I had been running. The results looked promising, and so I’m going to try upping the dose for a year and see what that gets me in the way of relief from Meniere’s symptoms. I’ve noticed that I seem to start exhibiting symptoms again before the next dose of Betahistine is due, so I’m going to take the same dosage three times a day. If you are a Meniere’s sufferer and you have triggers similar to mine, you probably should get your ENT to trial you on Betahistine and see if it helps you or not. I am curious to know if there is a sub-group of Menierians who benefit more from Betahistine than others. This data would clarify whether there is a benefit to Betahistine treatment or not. Comments on this subject are not only welcome but I’ll beg for them if I have to.
I’m feeling better, I thought. I should have known this was a prequel to the hell life had in store for me later in the week. On Wednesday the air conditioning dropped dead on us. It had been acting a little squirrely for awhile now and the system is nineteen years old. Several times over the last few years I had noticed that the thermostat didn’t seem to control the system like it should. It would sporadically fail to come on when it got too hot in the house, and would fail to turn off when it got cold. Sometimes the interior spaces got chilly enough that I thought seriously about wearing more clothing. On Monday, the system’s lackluster cooling performance lead me to do some basic troubleshooting and I noticed that it was well past time for a filter change. Changing the filter did seem to improve cooling and airflow, but Tuesday evening the fan wouldn’t start if we set the thermostat to cool, and Wednesday the fan said fuck it, I’m outta here and refused to start in any position. On or auto. Heat, cool or off. No dice and no air conditioning.
Ah, Texas in the summertime with no air conditioning! Back in the days before that invention every building in the region had ten or twelve foot ceilings and floor to ceiling windows that allowed cool air to enter the building from the lower sash, while simultaneously allowing the heat to escape the building from the upper sash (this is the origin of the term double-hung for the architecturally curious. Windows which can be opened from both top and bottom) and even then you slept outside on what was referred to as a sleeping porch because it was too hot to sleep indoors at all. Air conditioning changed architecture radically and not necessarily for the better. With the ability to alter indoor temperatures builders could ignore long-held rules of thumb that governed Southern construction, putting large glass facades on South-facing walls and lowering ceilings to the now-common eight foot height. Which is all just fine, as long as the air conditioning works.
So we called our handyman, but he was out of town for a week. Deeming it time to bite the bullet, we called a contractor we have dealt with successfully before, and they sent a guy out on Friday. Based on his estimation we had to replace parts just to see if the system could be revived or not. I’ve been down this road a few times. Replacing one part leads to replacing another part, which leads to replacing a third part until at some point you’ve rebuilt the entire system. As I mentioned previously, it’s a nineteen year old system. I can’t even get refrigerant for it anymore, legally. Spending money on this dinosaur is throwing good money after bad.
The heat and the humidity were threatening to send me spiraling back down into vertigo hell, but the salesman (comfort adviser) who showed up to pitch us on a new system came bearing gifts of window units. Consequently we were open to the idea of looking into replacing the ancient HVAC system. This was a theoretical possibility on Friday, a possibility that is rapidly gelling into a reality for Monday. So I’m taking this opportunity to start some renovations of my own that I’ve been wanting to get done since the first day we toured the place before buying it.
I won’t be raising the floor in the former garage yet, that project is a bit too ambitious even if it is desperately needed. The attic fan that has hulked above my head every time I climb the stairs is going away though. I’ve wanted that thing gone from the time we moved in. I can’t use it. It draws outside air into the house unfiltered. Everything outside wants to kill me with allergies. The last thing I need is something that pulls even more allergens into my breathing space. The window units alone are making my symptoms worse, I can feel vertigo perched above my head like an unwelcome avian visitor. Removing the attic fan means the upstairs HVAC will finally be properly balanced without the thing taking up attic real estate and letting attic heat into the living space.
Who knows, maybe other repairs and modification are following fast on the heels of the new HVAC system? Hope springs eternal, even for those cursed with chronic illness.
Then, methought, the air grew denser, perfumed from an unseen censer
Swung by Seraphim whose foot-falls tinkled on the tufted floor.
“Wretch,” I cried, “thy God hath lent thee—by these angels he hath sent thee
Respite—respite and nepenthe from thy memories of Lenore;
Quaff, oh quaff this kind nepenthe and forget this lost Lenore!”
Quoth the Raven “Nevermore.” – Edgar Allan Poe
I got what I wanted out of the project, but it took a herculean effort to get it done. A lot more work than it should have been just to get satisfaction out of the project. I wanted the Wife to try her hand at managing a construction renovation with outside contractors, she’s been dabbling in renovations with some of her starving artists and actors as hired hands. Not making money, not enough to talk about anyway, but being productive and getting things done for friends. So I let her supervise. We picked the contractor, made sure what we wanted was in writing before work began, and waited for the work to start.
As the saying goes no plan survives first contact with the enemy, the enemy in this case being the existing broken HVAC system, and that pretty much sums up how this project went. The HVAC crew showed up, punched holes in every surface available, or so it seemed, and I did my best to calm the Wife down. Holes in sheetrock make dollar signs roll across her eyelids in a frightening hurry. They did seem to be punching a lot of holes. A lot more holes than I probably would have, but then that’s me. I knew they’d have to patch the holes they made, eventually.
The upstairs system was replaced first. The Daughter and Son were planning on staying in the house through the entire construction process, so their A/C had to be in place as soon as possible. The contractor refused, however, to remove the attic fan. While we had discussed it, he said he would not actually do the work of removing it. So we got some of the hands that the Wife has worked with before to get the giant thing out of the ceiling over the stairs and then put a sheetrock patch up to cover the gaping hole sixteen feet in the air. Twenty year goal finally achieved! With that out of the way, the rest of the upstairs was finished in a day or so (or so we thought) and the contractor moved on to the bigger project, getting the downstairs system updated.
The downstairs system had to be completely removed. This was the agreement before the contractor was signed on. Little did I know just how involved removing the system was going to be. I had wondered to myself for the better part of twenty years just where all the ductwork was hidden in this house. That was a question that was quickly answered for me. It was hidden in the kitchen ceiling. Hidden in the bedroom ceiling. It was clear from the planning stages onward that I was not going to be able to stay in the house with the ongoing construction, this was the second reason the Wife was supervising. I was dizzy within minutes of this phase of the work starting. So we left to find the first of several long-stay hotels that have popped up in the last decade around Austin, while the crew continued to gut the interior of our house.
The HVAC system itself went in pretty quickly. The vertical unit and it’s closet would be removed, the closet abandoned and used for storage, with a new horizontal unit located over the master bedroom, closer to where air conditioning should be in the first place. After the HVAC crew worked out how to get A/C to the now remote rooms in the structure, back where the old unit was, it became relatively short work to get the new ducts in place. That was when the real fun started. The plumbing crew arrived.
We have gas heat, gas water heater, gas stove. I like gas heat. I like cooking with gas. I like not paying for electric heat. I like not burning food with electric burners. We rarely need heat around here, but when you do need it, it’s a requirement. Gas heat requires plumbers and black iron piping, and even more holes in the ceiling. The two plumbers that we ended up with from the four or five who showed up before they were needed could have just as well been the one apprentice. He did most of the work, and he was the more agreeable of the two to start with. The plumber he was helping refused to go up in attic spaces and so consequently required the additional large holes in the ceiling everywhere he needed to work, and they didn’t bother to cover anything before dropping attic insulation, sheetrock dust and plumbing pooky all over everything underneath them. They even made holes that they really didn’t need, in hindsight, after it became clear where they were going to have to run the gas line from and managed to leave the gas turned off to the other appliances for several days in the process.
The upstairs furnace was the last piece of the puzzle to be solved, even though we planned for it to be done first. The gas line spirals it’s way through this house like water in an Escher print. It shouldn’t go where it goes, and it doesn’t make any sense for it to go there, but it does. Why it is where it is doesn’t matter as much as how to attach to it does, and cutting the line where I wanted it cut would have been several thousand more dollars, probably.
Just getting them to tell me where the gas line came from outside the house to where the A/C system had been before we moved it took several days of hounding. When I finally got an explanation, it was from the master plumber for the contractor. And it only took about ten minutes of talking to him to figure out why the plumber who was assigned to our job was uncommunicative. The master plumber? I’m pretty sure he thought he was god himself. Once we got the misunderstanding about the gas line straightened out and agreed on the plan to get gas to the new systems, he demanded that he be compensated on the spot. He had to come out here, we needed to pay him. He had people he paid to do this kind of work. His appearance on the job meant we owed him money.
He left muttering threats under his breath, without his demanded payment, and no payment would be forthcoming unless it came from his bosses in the company. You want to be paid on a separate contract? Work from a separate contract. This isn’t rocket science. But we did get the gas hooked up, finally.
From July 31st to August 14th we lived out of a slowly rotating group of hotel rooms. I was able to stay at the hotel I wanted for my birthday, at least. I even got to swim in the pool, watch a pay-per-view and get drunk in my own hotel room. The cost of this disaster set us back several thousand dollars, but there are many things that you discover a way to pay for if you really need it to survive. I survived, otherwise I wouldn’t be here to write this all down. But two weeks was twice as long as the project was slated to take, and the cost could have been much higher if the contractor had felt like billing me for all the extra work they made for themselves to do. After the confrontation with the plumbers and the damage to property created by their ham-handed attempts to get the gas line to the new system, the contractor decided that they would just stick with the agreed upon price and call it even.
The destruction of the interior of our house was corrected, just like I knew it would be. The new finishes are better than the ones they replaced. The new paint a better color than what was there originally. Best of all? The stairs are no longer a trip through the bowels of hell. The heat in that area is no longer fed through a grill that lead straight to unconditioned attic space. The bedrooms are (as they should be) the coldest rooms in the house for the first time in twenty years. I can still hear the TV when the A/C fan is running, and that is a major improvement.
I just wish that the confrontation with the plumbers had not been fated to happen. I really like everything about this contractor and would unhesitatingly recommend them to anyone; IF. If. If they don’t need any plumbing work. HVAC work? They do a great job. The comfort adviser who set everything up was an asset that kept the work going in spite of the trouble the plumbing crew caused. But the plumbers? I wouldn’t use them again if you paid me. I have a plumber already, thanks. He’s gruff and speaks plainly and I get straight talk out of him without having to drag it kicking and screaming into the light. That’s the way I want it. Tell me what the problem is. Tell me what the solution is. Tell me what the cost is. I don’t shoot messengers that bring me bad news. That is what twenty years in architecture taught me. You want the bad news as soon as it is known, because that is how you fix the problem faster and more cheaply. Punishing the messenger is how you end up spending more money. The contractor should have listened to the plumbing apprentice on my project. Should have trusted the HVAC crew when they related the problem. Any of their hands could have told them what the problem was four days earlier in the process. Instead I had to get the information third-hand from the plumber’s boss, who quite literally only made things that much worse. So I can’t sing praises for the company which will remain nameless. Because they don’t deserve blame, either. We were made whole and the systems work better than they ever have.
Now to get on with the other projects in the house. Fixing the Master Bathroom which hasn’t functioned for ten years. Raising the floor in the Master Bedroom. You know, the little things.
I reposted it today because of the events in Washington DC, where the congress and His Electoral Highness Donald J. Trump are trying to undo all the work done by President Obama. They are trying to repel the ACA which they nicknamed Obamacare specifically trying to denigrate his accomplishments and tar him with the failures of the policy they helped to shape. The ACA, deemed to be not going far enough by most Americans especially the ninety-nine percenters, and condemned as going too far by the most vocal minority segment (self-identified conservatives) of the electorate.
In what should have been an obvious if counter-intuitive turn, the same people who protested that Obama did not go far enough voted for what was popularly seen as the opposition party, the Republicans. However, what the Republicans are is the party that confined Obama to the minimum that he was able to do. What is now transpiring in Washington DC is what happens when fiscal conservatives who think they have a mandate propose doing exactly what the people who voted for them don’t want done. To the utter consternation of the public who doesn’t follow politics as maniacally as I do, the hardliners in the party think that this barbaric proposal they’ve dubbed the AHCA is not punishing enough. The hardliners want it to be more punishing on the poor, the sick and the disabled, the complete opposite of what the popular mandate was.
Candidate Trump in one of his only sane moments said he would protect Medicare and make sure that everyone had healthcare better than they did under Obamacare, the ACA. However, His Electoral Highness has also forgotten his own promises on the subject of healthcare in his efforts to rally the party that saw his stances of protecting Medicare and Social Security as being too liberal.
We now find ourselves caught in an example of the argumentum ad absurdum brought to life. The people who voted for one kind of change, people like the one in the image, discovering their representatives apparently do want to see them die in the streets after all. That the reason conservatives knew there were death panels in Obamacare was because they were planning on creating death panels themselves. Death panels staffed by health insurance insiders who want to protect their profits. I’d laugh at the absurdity of it, if only I weren’t so busy focusing on not giving in to vertigo.
When I stumbled across that image in my Facebook timeline for 2011, I was immediately struck by the notion that I could craft a similar statement. Mine would have to be computer printed like his because dysgraphia would make it take two days to write by hand. It would go something like this,
I worked for 30 years until my health failed me. Unable to sit or stand without pain or dizziness, move without assistance, constantly medicated, I faced a future where the only hope of seeing my family fed or for them to continue to have shelter was to apply for disability. The federal government refused to honor my claim for almost five years. They said I wasn’t really sick. They said I wasn’t an American. I had to proved that I was both before they would pay me anything even though I had faithfully paid my taxes for my entire life.
Now I must stay unemployed in order to keep my family fed and sheltered and keep my insurance, the only thing that allows me to live an almost normal life. In the meantime my wife and children do not qualify for aide because my disability payments amount to more income than is allowed for the poor to make and still qualify for benefits. I have better care with Medicare than any of them receive even though they live in my house and must subsist off of the meager payments the government provides for my disability.
I am the 99%
If you voted for Republicans in the last election what happens next to people like me, people like him, will be entirely your fault. Think about that the next time you are tempted to complain about your taxes, or to vote for people who promise to save you money by taking a lifeline away from other people. You could well be me one day. Probably will be.
While the current word is that the AHCA is dead, we should never forget that the hardest of the hardliners, the most conservative of the conservatives, the ludicrously named Freedom Caucus, refused to vote for it because it didn’t strip enough benefits from the poor, the sick and the disabled. Think about that the next time you go to vote.
As of this writing, the Senate has postponed their version of the AHCA (which finally did pass the House, a meaningless achievement that they still celebrated on the White House lawn) it won’t come up for a vote until after the July 4th holiday. If there is any justice in this world, it will never be voted upon at all. It is a waste of time, a waste of lives and a waste of fortunes. What needs to happen now is Medicare for all, a basic level of coverage that every American chips in for, so that everyone pays into the system that we need when we get sick, and all of us will be sick at some point in our lives.
I am currently on Medicare and having the least trouble I’ve ever had getting my health problems tended to. Sadly, becoming chronically ill appears to have improved my overall health. That is what making your health a non-commodity will do for you. Make you healthier.
How do you get past the “why can’t you do its?” the (groan) “really? If I have to, I will.” Why can’t they just understand my limitations? I feel guilty asking my family to help me.
I need to get out and do things, but I want to isolate myself from things that make me feel sicker. How can I do both?
I became a different person after disability and handicap. After not being able to do many of the things that defined who I was to me. For me. First it was losing the ability to engage in paying work. Then it was household chores; mowing the lawn, working in the yard, even most dusting and sweeping (dust and mold allergies are my main Meniere’s triggers aside from stress) I have been reduced to editorializing on life from the sanctity of my home office where I have reduced the distractions and triggers to a minimum.
I’m right there with you. I feel like I’m hiding and that is probably because I am. Hiding from my symptoms and their triggers. I don’t know if this is the right way to cope or not, but I’ll do what I have to do to get by, because that is the minimum standard I’ve set for myself.
I don’t know how you can communicate the limitations to the people around you. My wife and children are among the most supportive people I know and even they have to be reminded of my limitations sometimes. I suggest trying not to take the grumping about unwanted burdens placed on those around you as personal attacks. The people who pick you up and care for you are caught in this situation with you. They have every bit as much right to be frustrated as you do.
I recommend frequent hugs, myself. I find them very therapeutic for everyone involved.
If you have daily vertigo spells to the point that you feel nauseated, you are precisely the kind of sufferer that the more drastic procedures for treating Meniere’s symptoms are for. If the injections do not give you relief, you should talk to your doctors about other more invasive treatments. If the vertigo doesn’t stop, you may have to face some of those consequences to make it stop. Making it stop occurring constantly, daily or weekly, is what every treatment out there is for. Keep looking til you find what works.
Just as important is the need to get people who understand your illness around you to support you. You need to get the feeling of vertigo across to the people you rely on. How helpless you are. Short of making them OD on alcohol or strapping them to the centerpost of a merry-go-round (no, don’t do that. Try getting them to read this) I’m not sure that everyone will ‘get’ what the problem is. My wife has been there for me since the beginning. I’d be dead now without her. If they (husbands or wives) can’t be made to see reason, then you need to find someone you can rely on to be there when you need it. You leave them (husbands or wives) when you find someone who cares, when you find someone who can help you with this.
This is what chronic illness is. You can’t get through it alone, and unfortunately we, your fellow sufferers on the internet, can’t be there for you in that way. We can’t be there to mop up and change the sheets. Can’t help tend children or cook or clean. Most of us wish we could, some of us know we’d be more of a liability than an asset. We can’t, but there are caring people out there. It is just a matter of finding them. Have faith in that.
This is the new normal for us. For anyone suffering from chronic illness. There is no other real way for us to approach it. To get past it. Embrace your limitations and do the best you can around them. We have to focus on the day to day. The here and now.
There can be no plans, no tomorrow, without someone willing to pick up the slack because there is going to be slack. We can’t kid ourselves about that fact. If it isn’t a limitation, it wouldn’t be an illness. It wouldn’t be a disability.
Maybe it’s just me. I don’t know. I’ve fought against disability all my life pretty much without realizing it. There have always been various limitations that I’ve just worked around. Meniere’s is just one more constraint that I don’t want and didn’t ask for, but there is no disputing its presence so make the best of it.
We can’t wish it away, god knows I’ve tried enough times. The closest I ever come to prayer is in the depths of a vertigo spell. “Just make it stop.” After awhile it becomes “just make it through this minute.” Then it progresses to “five more minutes.” Then ten, then fifteen, then onwards. If you get to the end of the attack, you get to see another day. Every morning you get to see, like the pilot who says “any landing you can walk away from” is a good one.
Enjoy the sunrise.