Your family went on a holiday, and you are the one who has all the back pain. That kind of stuff happens to me all the time. Other people can go on a holiday, have fun,come back somewhat tired but okay. But you and me practically die if we try to even enjoy ourselves one bit.
A friend with a chronic illness.
I get stir crazy sitting around the house. I just want to go somewhere and get out. This neurosis of mine drives The Wife nuts in turn, because she’s out all day and just wants to relax. She suggested that I go with her to pick the children up from her mother’s, a trip of more than eight hours in the car each way, and I balk at the thought of all the pain the car trip will cause.
I don’t know what it is that causes my back, hip and leg pain, but it is one of the contributing factors to my disability. I cannot sit in a regular chair for more than an hour without being in pretty intense pain down the back side of my left leg. Sitting in a car for any length of time can cause the pain to expand from the back of the leg to both hip joints and my lower back. Frequently, exiting the vehicle is a rather lengthy process of re-establishing feeling in my legs and relieving the pressure points in my back. Then it is a process of several minutes of determined walking to work out the pains in the hips.
I felt I needed to go with her anyway. The Mother-in-law was watching the kids, and she was going on her Alaska cruise the day after we left her house. It was a rare chance to tell her to have a good time in person, see the kids for the first time in a few weeks and get out of the house.
The first day of driving went pretty good. I drove for about 4 hours, stopping every hour to walk around. After I started hurting so bad I couldn’t concentrate on the road properly, I handed the wheel over to The Wife and just tried to cope. When we got to Mom’s house, I was so sick from being in pain that I could barely manage a “hi and good luck,” ate a little something to buffer the pain medication (even though I wasn’t hungry) and fell promptly asleep.
The trip back home the next day was torture. I woke up in pain from the stiff mattress. The car was so painful that I handed over the wheel within the first hour. I basically stood on the floorboard, forcing my lower back into the seat (which seems to shift the pain, making it more manageable) for the entire trip. I’ve been back for two days, and I’m just now feeling like myself again. I hadn’t noticed the tiredness until this trip. I’ve slept 10+ hours every night since we got back, and I’m still exhausted. What a vacation.
Do people ever accuse you of ‘faking it’? I get that all the time.
Question from a fellow sufferer
The Wife used to give me trouble about my allergies because I missed a lot of work. We live in Austin and as the locals will all tell you If you don’t have allergies, live here five years and you will. She developed allergies a few years ago and she has apologized for harassing me about missing work for allergic symptoms ever since.
My sibs on the other hand wouldn’t be so direct as to tell me to my face that I am faking it, they just don’t invite me to do much since I applied for disability. One of my sisters accused The Wife of faking her nightshade allergy a few years ago because we wouldn’t go eat where she wanted to eat. We still haven’t forgiven her for that. You can choose your friends, but you only wish you could choose your family.
This issue concerns more than a House Resolution endorsing fake history ; the core function of the falsified “Christian nation” historical narrative – which is built from many little history lies and distortions (and some big ones too) is to support Christian nationalism (link to an essay I did on how I think that works. What’s Christian nationalism ?)
The fight over the American historical record is a battle about whose version of history will be the dominant narrative that will get to shape the historical understandings of the next generation of Americans. The falsified narrative of the Christian right has been gaining ground for decades but now – with the letters and phone calls people right here on this forum have sent and made to their representatives in Congress – the fightback, to protect the integrity of the historical record, is truly underway.
The guests this week were Tom Reed (second appearance) and Dan Barker. They were both featured in the Psychology Today article An Atheist in the Pulpit. The episode also features audio of Dan Barker’s appearance on Oprah. This is also the second time Dan has guested on his own show. Two of Dan’s songs are featured towards the end of the episode.
January 13, 2007 – Katha Pollitt – She’s on next week (this year) as well. This episode she’s discussing Virginity or Death, concerning the HPV vaccination that will avert nearly all cases of cervical cancer if given to girls before they become sexually active. Of course, the religious right don’t like the idea of saving anyone from god’s righteous wrath, so they are foursquare against the vaccine.
Another issue I’ve discussed before, just not on this blog. Suffice it to say I was on the fence when it comes to requiring the vaccination by state law, as Texas nearly did. But then I’m on the fence about requiring any vaccination by state law. Otherwise, I don’t see the point in not requiring the vaccination, if you are going to require others. Of course, the Religious Right got their wish, and the only thing the sitting governor has done that I’ve agreed with was voted out by the legislature. Go figure.
There was a lengthy list of Freethinkers in the media at the end of this episode. Of special note was Ernestine L. Rose.
“Do you tell me that the Bible is against our rights? Then I say that our claims do not rest upon a book written no one knows when, or by whom. Do you tell me what Paul or Peter says on the subject? Then again I reply that our claims do not rest on the opinions of any one, not even on those of Paul and Peter, . . . Books and opinions, no matter from whom they came, if they are in opposition to human rights, are nothing but dead letters.”
Ernestine Rose, responding to religious heckler at Seventh National Woman’s Rights Convention
Freethought Radio compilation posts. I have not checked links in these articles since posting them. They probably won’t work.
Requiring vaccination by law is now a baseline for me, given the rise of the stupidity of the anti-vaxx movement. You will vaccinate yourself and your children or we will prosecute you. This should be how we deal with these scofflaws.
I haven’t written about my disability for quite awhile now (although I started the blog with that subject) It’s been almost two years. I’d just as soon not discuss something that has negatively impacted pretty much every (waking or sleeping) moment of my life since it manifested itself. if I spent as much time discussing it as it’s presence in my life would seem to warrant, I wouldn’t talk about much else.
Added to the daily dizziness and tinnitus from Meniere’s, there is the Piriformis syndrome that makes any form of sitting an exercise in slow torture. Then there’s the constant mold allergies (thanks, Austin) which also acts as a trigger for the Meniere’s. I could go on, but I won’t.
I have been attempting to get an acknowledgment of this disability from the U.S. government for about two and a half years now. I haven’t mentioned that at all, because I didn’t want to have to explain myself to people who inevitably would strike an attitude; like this one displayed by a relative in response to my thrashing single payer health care systems in general, and Hillary Care in particular:
I guess what disturbs me most is that you say you are libertarian, but you are also trying to get the government to give you a free ride. This doesn’t make sense to me. Which way do you want it? No government involvement in personal business, or do you want the government to pay you for being ill? Can’t have it both ways.
Cats out of the bag now, I think it’s time to have this conversation.
…Starting with the accusation of wanting a free ride. What an interesting way of describing an agreement between two parties, where one party pays into a ‘fund’ for all of his working life, and the other party promises to compensate the first in the event of disability and old age. In case there is any confusion here, I’m the party of the first part, and the U.S. government is the party of the second part.
I have diligently paid all my taxes over the years, including the 17% social security tax (half paid by my employers) which supposedly funds an account with my name on it, to be paid out in the event of disability and/or old age. That account has been funded to an excess of $40,000, money paid in good faith, based on the promise to provide a safety net for me if I ever become disabled or reach retirement age.
I have been released from two jobs now because of ill health. Employers do not want my services any longer. I spend every day combating the symptoms of the various ills that plague me, and it doesn’t leave me with much in the way of productive time; and my lack of employment denies me access to health care insurance, the only way that most of the treatments (surgery) can be afforded (whether they actually work or not) I don’t know how else to define ‘disabled’.
So here I am. I am disabled and the government has taken more than $40,000 from me over the course of my working life, with the promise to compensate me. I’m asking them to fulfill a contract. I’m asking them to provide the vaunted safety net that all the Democrats talk about.
After more than two years of fighting over this issue, I’m still just as without a safety net as I was at the beginning, even though all the doctors I’ve been to see confirm that I am disabled. (or at least that I do indeed suffer from the ills described) Two applications, three appeals, extra medical costs, etc. What do I have to show for it so far? Ridicule from an administrative law judge (I’m convinced that he refused to feel compassion for another white guy who clearly just needs to get back to work. White guys can’t be disabled, you know) and from former friends and family; and not much else.
Who’s getting the free ride? Sounds like the government from this end. Their actions clearly show that they’d prefer I dropped dead on the job before age 70 (which is when they are required by law to start paying me. Not the oft referenced 65 that the current retirees qualify for. How much longer will those younger than me have to work? 75? 80? Perhaps until they drop dead as well) rather than pay me anything at all; much less concede to something that trained medical professionals have stated is fact.
This is the reality of any government program; and it is precisely what it will be like to have government provided health care, which is nothing more than a government sponsored welfare program in which everyone is required to participate. Single payer health care under the U.S. Government will function in a manner indistinguishable from the Social Security system. The thought of this should scare anyone.
Now, if you go back and read some of my posts on the subject of Social Security, I’m sure that it will become crystal clear just how much of my money is waiting for me to need it; that number is somewhere in the range of zero. But we aren’t talking about the reality of U.S. government fiscal policy here, we’re talking about government programs that exist (whether I want them to or not) funded with tax dollars extracted at gunpoint from my paycheck. Programs which the government and it’s supporters insist are fully funded, and aren’t in crisis. I’m asking them to put their money where their mouth is. Provide that ballyhooed safety net, show me the money.
I don’t want it both ways; I want it to be one way. Either government programs work, and I get paid for being disabled (which I am) or government programs don’t work, and we run like hell from proposals to expand the size and scope of government to incorporate more of the health care system. Either there’s something wrong with taking money from the government for any reason (old age, disability, HEALTH CARE, corporate welfare, etc) or there isn’t any reason to not take what’s offered to you; and since most of my detractors will gladly accept their retirement money if they live that long (much less agitate for Hillary Care) I don’t think they are the ones who get to cast the first stone.
I see myself as beholden to pursue the disability claim given as I am disabled, and the government insists that it’s programs are there to help me; even if I only prove the opposing point, that government programs don’t work. So far, they aren’t looking very helpful.
I did get approved for disability a few months after this was written. It took an additional year of fighting to get the back benefits that I was owed, an arcane process that should not be anywhere near as time consuming and heartless as it is. I’m still not certain, even ten years later, that they didn’t stiff my attorney. That is the nature of government guarantees. What is guaranteed is that you will have to fight for your benefits.
Having said that, and now getting the benefits I was owed, I have to admit that aside from the fact that the fight was stupid long and completely pointless, government programs do actually work. Having been forced to acknowledge the error in my ideology, it is time to revise the ideology. Consequently I’ve stopped calling myself a libertarian. I would also like to state that Hillary Care would have been a better system than the one that was put in place by the Democrats under President Obama.
Health is not a commodity. We need to stop treating it like it is one.
What was I thinking? I just gave up coffee again and now this…
Now that scientists are looking beneath the surface at mushrooms, avocados, and peanuts–as well as once-maligned eggs and coffee–redeeming qualities for each of these five foods are coming to light. They have nutritional respect and deserve a place at your table.
Good news for any of us who have watched loved ones turn into strangers in recent years, while suffering from this disease. Here’s hoping that a therapy can be developed for humans out of this research.
As usual. Another week has passed, and I still haven’t worked up a decent blog entry. Took a stab at one tonight, only to draw the conclusion that the thoughts I want to express are still half-baked.
“they’re always half-baked!”
I may not be the most prolific blogger on the planet, but I get there in the end argument wise. Or at least that’s what I keep telling myself.
So, while I have 50 odd unfinished blog entries in the queue, at least I can say “I’ve got the Christmas decorations boxed and put up in record time, for this household.” No need to pretend the twinkle lights on the back porch are actually there for ambiance this summer…
Driving While Vertiginous. Which is something I try to avoid.
I hate talking about the Menieres, but it bears mentioning once again (for record keeping purposes, at least) because today I realized that I’m unable to make left turns in heavy traffic. The necessity to move the head back and forth to check both directions of traffic always sets up a momentary disorientation; requiring that I hesitate just long enough for my head to clear that I tend to loose my chance to turn. I’ve gotten used to making 4 rights where possible, just to avoid a left turn. I noticed today (I had to get out and deliver things for a friend) that I have certain places I can comfortably get to, and certain routes that I will take. But if it requires long periods on the freeway (most times even getting on the freeway) lane changes, or left turns in high traffic, I probably either won’t go or will get someone else to drive. It’s too dangerous, in my opinion.
As someone who once drove 8 hours a day, 5 days a week testing tires (in any weather) for a living, I find it quite weird to not be willing to get in the car and drive.
(minor vertigo, major headaches all this week. I blame the allergies)Rev. 03/07/22
CATO’s regulation seems to enjoy beating dead horses as much as I do. They have offered a rebuttal to the ACSH article that calls them to task for belittling the health threat posed by cigarette smoke. Quoting from the article:
We started that article with this declaration: “Truth was an early victim in the battle against tobacco.” We ended the article with this admonition: “When that goal [i.e., truth] yields to politics, tainting science in order to advance predetermined ends, we are all at risk. Sadly, that is exactly what has transpired as our public officials fabricate evidence to promote their crusade against big tobacco.”
OK, granted. They spin some pretty good arguments for the CDC’s figures being exaggerated. But I think they are confused about who and what is motivating the witch hunt that the CDC is simply the public edifice for. It isn’t the gov’t that is after ‘big tobacco’, as referendum after referendum and ordinance after ordinance against public smoking is proposed and passes. It’s the average person on the street who doesn’t smoke himself (which is now the majority of the population, by the way) doesn’t want to have to smell someone else’s cigarette smoke, and figures “there oughta be a law”. Suddenly, there are laws. This is how democracy works. (Yes, I know, we’re a Republic. The majority says we aren’t any more, apparently they don’t understand the meaning of the words in the pledge that they recited daily. I guess that’s what happens when you let socialists write documents for free thinking people) The fact that there are serious health consequences to smokers, and costs that get passed on to the government as the guy left holding the tab at the end of the night, simply buttresses the argument against allowing people to smoke, at all. Facts that the regulation article itself admits:
Second, we are wrongly censured for stating that “the hazards of smoking remain largely speculative. “What we actually said is quite different, indeed mostly contrary: “Evidence does suggest that cigarettes substantially increase the risk of lung cancer, bronchitis, and emphysema. The relationship between smoking and other diseases is not nearly so clear.”
Pretty much puts case closed on it for me. My point in bringing up the evidence against smoking was never to call attention to how many deaths, and the obvious manipulation of statistics to awfulize the outcome should be ridiculed; but the facts do show a connection between poorer health, shorter less healthy lives, and smoking tobacco. Since I have health problems already, it benefits me to choose non-smoking establishments when I do go out. Luckily for me Austin is a proper socialist paradise and has taken any need to think for myself, about where to go on a night out, out of my hands.
…Which is good, because if it was left to my anarchist/libertarian brethren I’d have no choice but to walk in and sniff the air before deciding if I wanted to actually stop anywhere. Probably just stay home in that case (the recurring “what do you want to eat?” argument is hard enough on its own) which would be cheaper.
On the bright side, I watched a segment on Beyond Tomorrow tonight dealing with an ‘anti-smoking’ injection. Clinical study results are positive (success rates approaching 60 percent) which is good. Most people who try to quit ‘cold turkey’ fail (3 percent success rate) The various forms of nicotine replacement therapies fair only slightly better (30 percent success rate) So the drug manufacturer is obviously quite pleased with the results. I myself quit cold turkey, after three tries. I was able to apply an REBT technique to the nicotine craving; I would think of the smell that an empty bar has in the morning when you show up to clean it, every time I wanted a cigarette. It took a while, but I was able to beat it. I actually feel ill when I think about smoking these days. (I’m applying the technique to craving french fries now. I don’t know if that’s going to work or not. Love them fries)
I hear you saying “what if I just want to smoke?” Fine by me. Go do it somewhere else. Here, you can have my old supply of coffin nails, I’m not going to need them anymore.
I’m finally getting a chance at some paying work again and the Meniere’s attacks are resurfacing along with the work. Yeah, it’s the stress, I know. I’m trying to take that knowledge in stride. Still, sitting and spinning at lunch and then all through the evening doesn’t lessen the stress levels if you know what I mean.
This turned out to be the last time I was hired to do piecework for a project that just needed some extra draftsmen thrown at it. I failed at even being able to do the simple task of cranking out the corrections at a fast enough rate to satisfy the customer, and they never came looking to hire me again.
Looking back on this entry from 2020 I feel an overwhelming desire to scream at that guy. Hey you! Treasure this moment, even though you feel like a failure! You will look back on even this depressing moment with longing. I would and sometimes even do volunteer to do the same kinds of work to this day. I design renovations for family, give advice on projects, just for the feeling of being useful once again. I just don’t get paid to do the work anymore. Being the breadwinner was nice while it lasted.
It was the muffling of sound that I noticed first, like I had a blown speaker in my head instead of in my car. This started in 1984 while I was living in Abilene, Texas. I didn’t know what was happening to me. I was in my 20’s and deeply into music. If it wasn’t the constant ringing, then it was the echo chamber effect, a distortion of sound that occasionally made conversation difficult. Allergies, I thought. Allergies that are making my ears give me problems. I tried everything to get rid of the pressure that I felt in my ears, especially the left one.
That first Spring, after a disastrous series of relationships ended and I lost my first architecture job, the reason I moved to Abilene in the first place, I was out driving around in my car listening to music, and I noticed that there was a buzzing in my left ear. I didn’t hear much of anything when the music was turned off, but when the music was on, the sound was wrong. High volume or low volume, the music just didn’t sound right. This went on for a few days and it was about to drive me nuts. Just enough pressure behind the eardrum to be noticeable, and just enough distortion in the music to be annoying.
I couldn’t clear the pressure by working the temporomandibular joint as I had done in the past when atmospheric pressure changes created a similar feeling behind the ears, so I got undressed and sat in the tub with the shower pouring the hottest water I could stand straight down on my upraised left ear. I figured I’d use the heat like a heating pad to drive the infection or fluid down out of that side of my head. I let the shower drum on that side of my head for about an hour or so or at least until the hot water ran out. I did this two or three days in a row. I know it was more than once because I recall my roommate getting pissed at me for using up all the hot water.
The last time I tried this technique, I finally got the pressure in the ear to release. When that pressure came off it was like a hammer hit me on the side of my head. I was horizontal in the tub with the water hitting me in the face when I came to. I guess I passed out for minute. The tub was spinning around me. I had to feel my way up to the shower handles to turn the water off, and then I slithered out of the tub on my belly and then managed to get up on my hands and knees. Walking was simply not possible.
I crawled to my bed and leveraged myself into it, hoping the vertigo would pass. I slept for at least a day after that event, and the roommate wanted me gone not too long after that. There was clearly something wrong with me, in his mind, and he wanted no part of it. He told me as much at the time. The garishness of the apartment still flashes in my mind as I think back to that place in Abilene. Freaky 70’s design colors.
When the Wife and I moved into the Willow Run Apartments in 1986-7 after they completed construction (from plans that I drew for P.V. McMinn) in San Angelo, the apartment complex’s gym had a sauna and a hot tub as well as an indoor-outdoor swimming pool. The sauna worked best at relieving the pressure in my left ear. I would sit in that little wooden box until I couldn’t stand it anymore, but the ringing and distortion would be temporarily eased by it.
I thought that maybe I was having a recurrence of ear infections related to allergies that had plagued me as a child. This was what I told the doctors that I would go see on a seasonal basis, and they obliged me by prescribing me allergy medicine or antibiotics if I happened to be extra convincing that day. I popped antihistamines trying to relieve allergic reactions (sort of the right track, I guess) I’ve tried nearly every one on the market, none of which really had or still have any effect. I finally settled on Pseudoephedrine and Guaifenesin, which I took nearly every day for several weeks at a stretch, They seemed to be the only things that worked predictably every spring and fall when my ears would start acting up.
In retrospect, it seems odd that I just stumbled across what is a common treatment for the disease I now have been diagnosed with, Meniere’s. I probably would not know what it was now if I had not been diagnosed with high blood pressure a few years ago. One of the things that they tell you when you go on the blood pressure medication is “do not take Decongestants, especially Pseudophed”. So I quit, even though I knew the fall and spring season would be hell.
They were. In fact, it was a hell I had never even come close to experiencing before. I couldn’t make the world hold still, sometimes for several days. The disorientation was bad enough, but the vertigo was disabling; and it just got worse. The attacks would hit me from out of nowhere. I would just have had a good meal, or I might just be holding my head the wrong way and the world would just take off spinning. I discovered Meclizine about that time and I carried it everywhere with me for at least a year. I went to see my first ENT (ear, nose & throat doctor) about that time as well, a totally useless individual who ran rather expensive tests on me, and then told me there was nothing wrong with me. Great, just the answer I wanted.
I love the internet. If you want to know something, and can find your way to a search engine, you can find what you are looking for. The internet is quiet if you want it to be, too. Nothing that you need listen to other than the ringing in the ears. So I searched. One condition kept popping up that matched my symptoms. That couldn’t be it though, surely. The Wife thought it was the blood pressure medication, but through experimentation we determined that there was no real correlation between the two.
Fall rolled around again, and with it the serious vertigo attacks (This was in 2002) attacks that had gotten so bad that I occasionally would end up passing out next to the toilet on the bathroom floor, like some teenage kid who didn’t know what his alcohol limits ought to be. I decided to go to a different ENT, one that a friend had recommended. I had determined that I was just going to discuss symptoms this time, and let him confirm what my suspicions were. After running through virtually the same tests that I had been through before, he asked me,
have you ever heard of Meniere’s disease?
OK, so I was right then.
I went through some sinus surgery over Christmas that year. Corrected a deviated septum, and they cleaned out the sinus passages to see if that reduced my allergic reactions. It seems to have worked somewhat, although the disorientation still bothers me on occasion, the serious vertigo attacks are becoming fewer now. The ringing and the pressure remain, however. I could go see a neurologist, I have a card for one currently in my wallet. It’s something I’m thinking about. I think I’ll go to an allergist first, I’m certain that if I can just get the allergies in check, the other symptoms will fade without the need for further surgery. Maybe it’s just a dream, however.
Anyway, I’m turning 40 this year. I still don’t know where the time went. Music is harder to listen to now, but I still plug in the odd disk and give it a listen over the tinnitus. I have to turn my right ear to conversations now, the left ear is nearly useless. I occasionally wish it would just stop working altogether, I would probably hear better then. I wonder if Van Gogh was a fellow sufferer sometimes. I could imagine doing something nearly as nutty as he did, just to get the ringing to stop.
I’ve been meaning to write this for some time now. I hate having to rely on somebody else when I should be able to get by on my own. Needing to write this down and post it felt similar to me, needing somebody to know what I was going through, so I didn’t do it. But I sat down tonight and wanted to write this article. So I wrote it.
I hope somebody out there gets something positive from this. You aren’t alone any more than I am. I have friends and family that are looking out for me (the Wife seems to be too protective sometimes) so I try not to worry. But I wish it had been just an ear infection. I wouldn’t wish this disease on anybody.
Today, October 26th, 2005
I created this blog today. It’s a pretty good day. I don’t know why I think that. The Wife lost her job last night. We did oversleep this morning. I slept with my good ear against the pillow and was consequently unable to hear the alarm this morning. The children got off to school okay, the Wife is back in bed asleep, and I’m up here (as usual) in front of the square-headed girlfriend, typing my little fingers off. At least the world isn’t spinning today.
I couldn’t say that yesterday. Yesterday I couldn’t stand up without nearly fainting each time from a near vertigo attack (the world snaps and starts to spin, but I focus on a single point until it goes away, or at least recedes) at least a full attack didn’t surface. Can’t say that for most of the rest of this year. It started out well enough. I had a job, I had an employer whom (I thought) understood my limitations, I had taken the time to explain Meniere’s to him and what I thought set it off, and the fact that I might miss work, sometimes a couple of days, and that I would do my best to make it up. I’d been there about 9 months in February when he called me into his office to inform me that he was letting me go because “I was sick too much” (his exact words) This was the second employer to use this reason in letting me go in just about as many years. I decided that I would not seek another full time employment position, and would instead take on the odd contract job that I might be able to land. Unfortunately there hasn’t been enough of that work.
Not that I’ve felt well enough to pursue much work this year. I have had more attacks this year than any year since I started keeping track. I was down with constant dizziness and occasional vertigo for 8 weeks this summer, which is something that has never happened. The few times that I have worked have been restricted by an attack at some point during the term of the contract. That’s not good. When someone contracts time sensitive work to you, they don’t want to hear about medical problems.
So here I am. Holidays approaching, no work in sight, wife not working at the moment, retirement money almost gone. But, I got up today and wasn’t dizzy. I’m going to go walk the dogs and enjoy the sunshine. If I come back and I’m still not dizzy, life is good. We’ll see.
“What lies behind us and what lies before us are small matters compared to what lies within us.”
This was an entry onMenieres.org Journals, a set of pages that have been down for several years. I thought I would take the thoughts from there and combine them with other musings and make an article for the blog that I keep meaning to create. As you can see I have finally created it with this entry. This was my Meniere’s story up to the time of the creation of the blog. I reworked the first couple of paragraphs, altering it from the text that existed on my journal page, so as to incorporate the story of the first vertigo spell. I have finally fleshed it out sufficiently to do the story justice. I wanted to separate that experience from the later experiences with the sauna and the doctors, which required the re-editing. They are my memories, I will do my best to record them accurately.
Documenting my symptoms, writing about Meniere’s and the other trivia of a disabled person’s life, has taught me how to write over the years since I started writing this blog. You spend a lot of time alone when you have a chronic illness. People always ask “how are you” as a greeting, and when you are chronically ill (and if you are honest) the resultant monologue can sound like an endless litany of complaint. So you don’t go out much. You spend a lot of time alone with your thoughts. Which is why I decided to start writing them down, now that technology has shown me how to bypass my first disability:
Loneliness is the worst part of suffering from Meniere’s. I generally don’t need much attention, and even I find myself craving conversation. I might go a whole month with just the family to talk to and then suddenly the urge to run out and talk to people becomes almost overwhelming. This is understandable. As much as we like to pretend to ourselves that we are inviolate individuals, we are actually amalgams. We are a sampling of all the influences we are exposed to each and every day. Being alone too much is destructive to the human animal. Go out and find people you can trust, if your family isn’t supportive or attentive to your needs, and spend time in those people’s presence. Please don’t wither and die alone.
I went bilateral (Meniere’s in both ears) the day my mom died. That was the roughest year for Meniere’s and me since I lost my last job in 2005. That is, until the year we all lost to COVID-19. I don’t need to tell any of you about that. It is all over the later parts of this blog if it isn’t all over the news still.
I do have a treatment regimen that I follow:
If you want to do your own research and decide what is right for you, I used to recommend the Meniere’s Disease Information Center. Unfortunately the site is only available as an archive on the WaybackMachine now. You can browse the content on the archive, but it will get more and more dated as the years go by. There are precious few other places that I would send anyone to without a word of caution.
A friend and fellow blogger has put together a decent list of resources here. Drop by and say hi. I’ll let him stand by his own suggestions rather than offer any of my own aside from the treatment article that I revise pretty regularly and a list of the forums that I have contributed to in the past or continue to participate in:
I mentioned Menieres.org already. That site and it’s participants come and go, year to year. It isn’t the only resource out there, so don’t despair if there are no quick answers for you in the forums there, if they are still up.
Reddit.com/Meniere’s – On a whim I decided to see if Reddit had a Meniere’s group and they did. Not a lot of posts there, but if you post a message you’ll generally get an answer within a day.
Facebook.com/Meniere’s Resources which is associated with menieresresources.org – I’ve been aware of this group for awhile and only recently found them on Facebook. I got sideways with a moderator in that group and so we’re no longer on speaking terms. It’s probably just as well. I’ve had enough chirpy, syrupy optimism to last me for awhile now. However if that is your thing, drop by and say hi. Nothing but love, as the saying goes. The other early Facebook group I frequented was called Spin Cycle, but I have left that one as well. Another difference of opinion.
In June of 2018 I found Meniere’s Worldwide which runs on more of the freewheeling style that I can appreciate. Just scroll on by, as the moderators are fond of saying. Scroll on by if you don’t like what you see there.
I describe how I got disability here:
If you suffer from frequent vertigo and are unable to work full time on a regular basis as I was, then disability is just about your only option in the US. This article:
Stands as record of how I came to suffer so many symptoms while pursuing my dreams of an architectural career. A dream which has sadly come to an end. I keep hoping I’ll find another pursuit, or find a way to get back into architecture, but productivity and concentration remain limited and elusive.