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One plainchant whinge coming up.

I shall try to recount the events of the past few days as they relate to my health, but frankly my memory is full of holes these days.

My assistant having left last soggy Sunday, it is left up to me to do things like bring in wood. It was raining the first half of the week so nothing was happening then. Still had the ‘standard’ symptoms, and then things got a little odd.

Thinking the nightmares might be related to one type of pain killer I switched to another – and got new problems. Here it was Thursday (I think) and I was feeling pretty sick suddenly; numbness in my lips, shivering, face and eye pain … just really terrible without the usual signs of having a cold. Not having any assistance from the medical profession at hand (really they haven’t done anything for this for nine years now) all I could think of was that my nervous system is affected by constant bombardment of pain killers as well as a constant bombardment of pain. If this makes no sense remember it’s the thinking of someone who is frankly a little unstable due to the symptoms. Or something.

I also noticed when taking pictures in the dark that I’m unstable on my feet at ground level now. I don’t hold still and it seems like the world swims around me at times. Daylight is different; somehow the visual cues cut in and my lack of balance is compensated for. I should try standing still with my eyes shut and see if I fall over.

Anyway, pretty obviously something is wrong, has been for years, and is getting worse. I don’t know how often I’ve recounted that to doctors but all I get for feedback at best is agreement on symptoms.

So Friday events transpire that I must go out to the cabin and get the remaining logs sliced and brought in before the weekend rain. Oh, also a couple of tables someone wants. I hook up the trailer and go to do it.

Oh boy. It isn’t that much wood (about 1/2 a cord) but it takes forever. Cut, rest, load, rest, cut, rest, load, rest … over and over. It takes 2,987 days. Okay, about three hours really. And I’m amazed it’s only that.

Started with unloading the wheelbarrow that was left full of dirt and blocking the back door. Now full of water too, which means it weighs a lot and needs tipping out and then dumping. This so I can get inside and take the legs off the two tables and load them into the Xterra. That takes longer than it should. Then I get on with the wood.

Well I did it and brought it home and the person who wanted the tables … only wanted the one. Thanks. I needed that extra work. Came over right away and got it, but really it could have waited until the next day when I was able to stand up again. There went Friday; too tired to eat, too painful to sleep.

Saturday rain held off while I unloaded the wood. Hoorah! It took three goes with a lot of increasingly longer rest periods between rounds. And that ended that day.

Now, to understand this you need a frame of reference. Last fall when I was harvesting wood I’d go out and load up the trailer with rounds (slicing logs already brought in from the forest previously) and bring it home and then unload it. All in one day. No problem. Now it takes me two days to do the same and there’s a lot more resting between efforts and a lot worse results afterward.

Sunday. Feeling sick. Missed sleep again in the night. Had to take extra antacid pill. Naprosyn didn’t do much for the pain, but then neither did the 10mg cyclobenzaprine I took Friday. Slept in even later than before. Pain in the joints and of course the legs which won’t go away no matter what I try. This makes me think the leg pain isn’t muscular or even neural. But what do I know?

I know I’ve got to be able to get up early enough Tuesday to go to the dentist. I know I’ve got to go back to the forest several more times and haul in a lot more logs and slice them up and bring the rounds home and stack them.

I don’t know how I’m going to do this.

And as for next year …

The Nothing Report

I thought this was going to be even less than it is, as a week after undergoing the MRI the report still hadn’t appeared. Then it showed up Sunday morning, which seems odd but what the hell.

It says nothing.

It uses a lot of complicated words and two pages to say it, which is typical of the medical profession.

What it doesn’t say is “you don’t have MS that we can see”. It also doesn’t say “aha! THAT’S the problem!” It doesn’t even say “something odd there, we’d better run some more tests”. You know they’re really sick of you when they don’t want to run more tests.

What it does say is there are some minor disc protrusions that aren’t significant and one other anomaly that doesn’t really indicate anything. What it does say is “you are still screwed and we still don’t know why”.

Without a label to put on this thing there’s nothing to blame and no predictability to the future. “You’re going to continue to have bad days” isn’t much help. Well I can make a short cut there as I can’t remember when I last had a good day. This lack of diagnosis has gone too far, and it’s going to trigger more arguments.

Meanwhile on my left foot there are a couple of toes in trouble and I don’t know why. Too much time on my feet? Feet too tired to take the time on them? What do I do? I don’t know. There has been extra strain without having my wife around to look after animals and handle whatever she can. I doubt I can convince her we need less activity in our lives, or a different kind. Yet that seems the only thing that will bring any form of relief.

Yes, I’m still screwed and don’t know why and have no possibility of finding out why, much less doing anything about it. They’ll stick a generic “chronic fatigue” label on me and tell me to go away. That’s what every doctor has done so far; given up.

Maybe I should give up. Life has got too hard already and there’s no chance of that reversing.

MRIonday.

It was actually Thursday, but I save this stuff up for Monday so no one has to look at it.

It was actually Thursday evening, because once they get the MRI machine revved up they keep it going as long as they can. So I drop off the dogs and make the 2+ hour drive into the heat of the Big City. Really; it was like passing through the gates of Hell. Always warmer there than out in the high-elevation country where I live.

Tried to do some shopping on the way to the motel, but the stores weren’t having it. In fact I discovered that one of my favourite snacks is no longer carried by anyone. Why? Because the universe doesn’t like people being happy so it does everything it can to make us miserable, like taking away any small pleasures we might have.

Check in, watch some TV, marvel at how awful it still is and congratulate myself on not having any form of TV service for years now. Not only do I not miss it, there’s nothing to miss. Newton Minnow thought it was a “vast wasteland” decades ago. He had no idea just how inane it could become. 500 channels of pure video dross.

Eventually I wandered over to the hospital and made my way to the MRI department. After hours service is a bit dicey, as there’s no one around to direct you except the cleaning staff. Fortunately this hospital has really good staff at all levels. In fact I’ve only ever encountered one bad employee there, and she got fired. Well I barely had time to catch my breath (literally) before it was time for the test.

Turned out they were going to use the dye, which explains why they tested for creatinine; to make sure my kidneys work. They do, after a fashion. Then into the machine!

Now, they warn you about it being claustrophobia-inducing. No problem. They warn you about the noise. No problem, although the ear plugs they give you do little to alleviate that situation. They warn you about having to lie as still as possible for an hour. Ah, a small problem when you have muscles that act independently, but I can cope. They don’t warn you it’s bloody boring!

Beep! Boop! Tweet! Ratta-tat-tat! Gronk! Gronk! Zing! Loudly. For half an hour. Lie still? Kind of hard when the whole machine is shaking from the noises it makes (actually the noise is from the shaking). Then they stick the dye in and do it again. I’m pretty sure my hearing hasn’t recovered fully yet. There’s room for improvement there, as the noise is a result of vibration induced by the magnetic field. In non-engineering terms, the thing is trying to shake itself apart.

So we have this test which manages to be annoying and boring at the same time. If that isn’t a triumph of technology, what is? In fact it’s a metaphor for society as a whole. One which can be extended to the results which are neither forthcoming nor positive. I expected I’d see them come up on my e-health report, but not a word so far. Well, it is the weekend. When I finally do find out what they found out it will probably be nothing. I have every confidence the trip was a waste of time, effort, and money – just the same as always.

Anyway I didn’t sleep well that night. Messed up schedule and all that. I could have taken a pill, but didn’t want to make the drive back while hungover from the medication. Instead I got up and got out of the city and got back and … failed to get a nap in. Now I’m feeling extra sleep-deprived which I already had enough of to begin with.

Also I’m on tenterhooks waiting results I’m pretty sure won’t be helpful.

The city may be hell, but life is limbo.

Monday

This is the weekly ‘health’ report so you’d best skip it.

If you think you’ve got it bad, it could be worse. A friend of ours … well her son is dead now. Disappeared Friday night, found dead Saturday. The why and how of it don’t really matter compared to the horror of it. He was young and should have had a long and wonderful life ahead. Now … I don’t know what’s keeping her together. I can’t even imagine having to deal with such a thing.

So I’m not wallowing in self-pity today as I usually do. I’m just thinking clinically about the increased symptoms. I was taking a close-up picture last week while standing upright and noticed how hard it was to keep the subject in focus. Took me a while to realize it was because I was wavering back and forth; I can’t stand still anymore. Then I tried to take a picture from atop the scaffolding that remains set up by the shed I have not yet finished after five years. Got up on it with some difficulty, and had to come right back down. For some reason the added height made my vertical instability much, much worse. Try explaining that to a doctor.

Anyway this week it’s all about the trip to the Big City and the MRI. I’m hoping it does show something because I’m tired of having symptoms with no diagnosed underlying cause. Things keep getting more difficult to do. Meanwhile my wife has had to change her ticket to “open” because she has no idea when she’ll be able to return from dealing with her unfortunate sister.

Yet we are not having to deal with anything like the tragedy this post began with, so we’re not so bad off.

Me on Monday

Last week I tried to cancel my upcoming MRI, despite having waited so long to get it. The reason wasn’t even a nicely selfish one like “I know it won’t do any good” (which it won’t). It was simply that I was having trouble putting together the arrangements to see to everything so that I could go to the city overnight and get it done. Well they wouldn’t let me cancel it. By that I mean after sorting my way through the phone menu until I reached the department I was informed they don’t really take calls anyway and no one answered. Gosh, that’s nice of them.

By sheer luck I managed to get arrangements made and went to get the blood draw only “one day late” (they want it within 2 weeks of the test). I don’t know why they want it, as there’s no dye involved or anything so what difference does it make? No one explained. I don’t really care. No matter, as I got the results the next day (Saturday) and there was no real difference from the previous one last month. Given the nature of the results, I will now likely be referred to a nephrologist. Not that that will do any good either.

I sort of shot my bolt on Friday by doing the blood draw and some errands as well as mowing some more lawn. That first: when I use the string trimmer, my hands end up tingling. So on Thursday I did some with the push mower. My hands ended up tingling. Aha, let’s just ride around then; nothing to vibrate or push back and forth, just twist the wheel.

My hands ended up tingling.

This is probably not a good sign. They don’t do it when I just drive, but it appears any increased, sustained grip causes some really negative feedback. Oh goody. I’m about to make a 2+ hour drive. Again. Hmm. Better keep an eye on it, as the last thing I want is for my hands to stop working when they’re trying to control a vehicle at 100 KPH. Unlike when they just drop things around the house.

One of the errands I did was to order new glasses. Fortunately I was able to get them whole from this place for what the other wanted for just frames. Still expensive. And I had to change my mindset about glasses; I really only use them for driving these days. Everything else can be out of focus without it mattering much. I skipped on the reading lenses too, as I seem to manage that okay so far. If circumstances get worse I can revisit that.

Well I had things I wanted to do Saturday, but you know I just couldn’t get up the gumption to do them. I sat and felt that if I rested up for a day … ha ha ha ha! That’s a joke. There is no such thing as “resting up”, there is only “exhausted and not doing things” and “exhausted and doing things”.

Curiously, my step-daughter has recently succumbed to similar symptoms but with different blood test results. Now she is going through the doctor-after-doctor regimen with probably no conclusive results. We could form a club: “Don’t Bother Us We Haven’t Got The Energy To Put Up With You Club”. The difference is she is young and has two little children so has no choice whatsoever. As an old retired guy I can skip amazing amounts of activities I’m not up to. Except for tending the animals, which is a lot like looking after small children except they rest more.

The cabin is a loss this year. I can’t get to work on it and if I could it wouldn’t be much and it’s already late for getting anything finished. The contractor said he may be able to tie up the loose ends from last year’s work in a few weeks, but couldn’t do anything more until next year. All gone wrong. As usual.

Meanwhile my wife is still stuck in England trying to get a handle on the situation with her sister, and isn’t getting much co-operation there either.

I can’t even manage to get out anywhere and take some more pictures, which will put a crimp in those plans.

I think the term that fits here is “nadir”.

Maudlin Monday

I’ve been through the penultimate test, and it was negative. More precisely I’ve had a fluoroscopy of my diaphragm and the report amounted to a single line stating there was no indication of paralysis. Whoopie. I would have liked to ask the doctor who evaluated the results about a couple things I saw during the test (they let you see the screen: it’s fascinating) but … There it ends.

If you understand Latin you know from the first sentence in this post that there is only one more test to go. Literally (sorry; couldn’t refrain from that). The doctors agree there’s a problem, and agree they don’t know what it is. How nice. Maybe they’ll name a new disease after me if the final test turns up negative as well. More likely they slough it off as one of the undefined conditions that plague people with similar symptoms, all of which are diagnosed by eliminating other possibilities. No matter.

What does matter is trying to deal with something when you don’t know what it is, or what to expect from it. The difficulty of this has been heightened in the past week as I’ve been coping on my own (with two dogs and three cats) whilst my wife is away coping with her ailing sister (and an equal number of uncooperative professionals). Maybe it’s the weather (cool and damp), maybe the problem has done another downward lunge, but the usual buoying effect of adrenaline isn’t there this time; I’m foundering.

This has led to some tension between us as I the pessimist clash with she the optimist. Somehow she believes there is a way to continue as before. She’s not living in this body is why. There is no way to get anyone to understand what it’s like to go from Superman to living cadaver. Possibly because most people aren’t capable of expending the sort of effort I always have done. Possibly because for too long I’ve made it look easy. Possibly because people read books where the hero who has been through enough to kill him keeps plunging onward (impossible narrative has a lot to answer for, in my opinion).

So I’m stuck. I can see what needs to be done to make life easier (read: viable) and it is diametric to my other half’s desires. This is what causes depression, people. And speaking of which the doctor’s best offer has been lots of water and loopy pills, which I declined. I have enough trouble getting through the day with a reluctant physique; I do not need to be out of my head at the same time. If I didn’t need to function I wouldn’t need anything to help me function. Catch 22 and all that.

On Wednesday I go to spend more money and have my eyes examined, followed by some very expensive new glasses. They won’t help much either, as there is a limit to how much vision can be corrected under any circumstances. Especially metaphorically.

What day is it?

Well things are getting sadistically real here. Friday started with so much pain in the feet I thought I’d been running all night. Went to town in the pouring rain and came back to light the fire to fight off the cold. Next thing I know I’ve got so much joint pain I’d prefer to be dead.

Did that shock you? It’s a frequent feeling.

It goes along with wanting to smash the phone with a hammer because it rings – same idiots calling over and over and hearing the message wife is not here but if they call enough she will be? I want to punch people. They deserve it. Really, I’m under no obligation to put up with morons.

I have no obligation to put up with anything. Not even the law.

Oh they all get away with it for the simple reason that when I’m at my most violent I am also at my most debilitated. Frustration leads to depression leads to violence.

So I turned the damn ring off. Screw ’em.

The pain and fatigue wear on my mind in other ways; I don’t know how coherent this post will be (I start out with an advantage I admit) and frankly I have to keep figuring out what day it is by analysis.

Days like this I stare the horror in its face: I’ve seen the future and it is murder, just as Mr. Cohen said. Whose murder is all that remains undecided. I know that I need to get rid of the aggravations external because their internal cousins are more than anyone can stand. That is not so simple as it sounds. It means a horrific alteration that there is no pleasant way to do. Oh, just give up all you love and tell me how easy it is. Tell me how understanding those around you would be when you tell them you can’t associate anymore. Go one; you first. Tell me how that works out.

So no more cabin, dogs, cats, and subsequently wife. Wow. All that will do is buy me time, too. I just don’t know anymore. This is the worst day I’ve had for a long time. If I take enough pills to counteract the effects I will be unconscious.

*Insert long profound swearing here.*

Oh expletive, the chest pain is back now. I wish it was heart failure and not just pain for its own sake.

I’ve read several entries from fellow sufferers today, as I seek encouragement from those managing to cope. Beats me how they do it. They are younger and stronger to start with; perhaps that gives them incentive to continue. I’m old, and I’m done with living. There wouldn’t be much to look forward to even without any illness, but it should be all peace and ease not increasing pain without relief.

More Monday

Last Monday was a hurried trip to take dogs to kennel, wife to airport, and me to motel to await Testing Tuesday. Today I have a doctor’s appointment. But wait, there’s more!

The test done last week was a Fluoroscopy (which spell-check doesn’t recognize as a word). It was interesting, especially as I got to see it on screen as it happened. I’ve always been interested in medical imaging, probably as an offshoot of my interest in photography and science in general. This is a procedure which has been around almost as long as still x-rays; the difference being the radiation hitting a fluorescent screen or these days imaging sensor. You can watch things move in real time.

In this case they were looking at my diaphragm, but the heart with its oversized right side was visibly beating away. I didn’t notice anything too unusual except a couple of sizable dense spots on the left side of the diaphragm. Could be just an anomaly. Normally I’d have the results in on my e-health notice already, but it hasn’t happened. I doubt the local doctor will have it yet either.

But what I did get was notice of appointment for the MRI! At last I will be able to either get a result or eliminate yet another possibility. Most likely the latter. As Dr. Russian Car said, there clearly isn’t anything that can be done no matter what the problem actually is.

So I put in a fine few days of coughing and functioning on my own, poking about with the new camera, and waiting for today’s appointment which I know will be meaningless. Next month Friend Wife will return and then there will be yet another visit to the big city to get her followed by another to get the MRI. That one will include another overnight stay as the test is scheduled for 7:30 PM (once they fire up those machines they keep them running as long as possible, thus they end up doing imaging at some odd hours). Oh boy, more travel and expense.

With what I did last week it was looking pretty bad for continuing any sort of major activities. Cutting down weeds with the trimmer, for instance, left my hands weak and tingling for a couple of hours. Fixing a single board on the ramp took too long and made me sweat like a marathon runner in August. It’s really discouraging when the simplest of tasks require a major effort. I’ve got to run on adrenaline until July 11, then two weeks of ‘normal’ until I have to ramp up again.

It’s strenuous and if I didn’t have my renewed photography interest for distraction I’d be a basket case.

Monday, MS, and Moskvitch

In a bizarre turn of events I got a sudden appointment with the neurologist whom I refer to as Dr. Moskvitch because as with all the others I can’t remember his actual name. (Some of them suffer worse fate than to be associated with a Russian car, believe me.) So there I was, about a week after going to the big city, going to the big city a few days before I was to go to the big city. Did you get all that? This was to be a ‘short’ trip in that no shopping was scheduled; just drive down, see the man, and come back. Oh foolish we are to believe anything could be so simple.

I left after 10:30 so I could grab the mail at the post office post-distribution (they’d be shut by the time I got back). No problem; three hours to get to the appointment. It was a lucky day so far as papers I’d been expecting showed up, as well as papers my wife had been expecting and part of an order I had outstanding. All good. I got a two-for-one deal at the bargain store, and picked up another deal that will be subject of its own post later. Everything going well with little effort on my part. That’s the way I like it.

A few showers on the way. Nothing serious despite the threat of T-storms in the forecast. The trip is long, 135 Kms, and it takes over two hours. I’m going to stop once in town, then roll on down to the office. No problem. Park across the street, money in the meter, cross the road, up ten steps … and be ever so glad the elevator is right there. Maybe it was the 30°C temperature. Maybe it was two days in a row previously mowing lawn. Maybe it was just a bad day. I barely made it. The office was right next to the lift on the 3rd floor, I checked in, sat down, and nearly was asleep by the time my name was called. Maybe 5 minutes. At least I got to catch my breath.

We went over the history. It had been 3 years since he saw me. Lots to cover, nothing improving. He poked and prodded and hit me with a hammer. I pointed out that the adrenaline from being wound up for the visit was showing me at my best, rather than typical. We talked about possibilities. He decided the MRI was a “might-as-well” because it would rule out MS or other things or perhaps show them up. It’ll be a couple of months.

The bad part is all the other things he (and indeed the other specialists) could think of all fall under the same category: no cure, not much treatment, going to get worse, do the best you can. I know things that will help, and they are not likely to come about. I’m sort of trapped in a lifestyle which I already have difficulty accommodating. At some point it will just be either “can’t do it” or sudden failure and I know it. It’s hard to explain to a non-sufferer what it’s like to feel yourself losing yourself.

So in disappointment I went home. It was late when I left and I fueled up and got some food and drove back in occasional showers, getting home after 6:00 PM. Just about time to take some pills and go to bed and listen to the storms probably starting more fires (something that keeps me on edge). Lots of pain. My feet hurt up to my knees, for example. Stayed awake for hours, took more pills trying to numb it. Woke up after a few hours – more pills. Repeat. Get up in the morning feeling not improved and begin replanning the day. Such is life from now on.

Now it’s Monday and guess what? I’m going to the big city again. This time to take the wife to the airport so she can have the unenviable flight to England to look after her sister with Alzheimer’s and I stay overnight to get another test tomorrow – and then drive back home to cope on my own for three weeks while she’s gone.

This is all too much for us. I know what needs to be done but she’ll never agree to any of it because she loves the life so much. Unfortunately it is me who enables the life, and that is becoming impossible. I don’t know if an official order from a doctor to stop and change would help convince her, but I’d like one all the same.

I need to go back to my photographic distractions and pretend this isn’t happening. Here’s a picture of a longhorn beetle, for whatever reason.bigbug

I was right

Too make a long story short … I can’t. It’s a long story and I’ll trim it as much as possible for the sake of anyone reading.

So I go to the Big City on Tuesday. Arriving early despite traffic delays, I spend some time killing time before it’s time to check into the motel. I do this by trying to locate certain items that were on my list in certain stores that turn out not to have them. Oh goody.  This starts with the One Store On Earth That May Possibly Still Have That Camera You Want and goes downhill from there. Some success at the thrift store where instead of getting what I was after I found a camera bag for the P610 and get it cheap because I’m an old man and they give a seniors’ discount.

Motel check-in goes okay, although I have to cool my heels for a while until they’ve finished cleaning the room. Talked with the desk clerk abut various things including how the new hospital parking is always full and why. No worries; it’s across the street and I’ll just walk over when ready.

Oh joy, that didn’t go well. A couple of blocks walking to get there, up the elevator – still doing okay – all the way to Admissions – now breathing pretty damn hard – and the pulmonary clinic has moved since I was last seen and it’s not just around the corner anymore. In fact I have to go back to the first building and – by the time I get there I’m gasping and sweating and probably worrying people that I should be in the cardiac unit. Anyway I got to sit down and rest while filing out a form before the testing.

The Testing. Obviously a procedure designed by Torquemada. One of his more subtle efforts. The side effects include headache, dizziness, a sense that your eyes have been sucked into your skull, over-all feeling of turning to jelly, and the curious combination of oxygen deprivation and hyperventilation at the same time. The technician said I definitely had difficulty and there was a decrease from last time but not markedly so. I still sat out in the waiting room for half an hour before venturing back to the motel. Oh and no one there knew how to do the e-mail sign up and the people at the Admissions desk were gone when I went and looked – yes another long walk for nothing. I sat there a while before leaving. Motel has bed. What a good idea.

Wednesday dawned early and several times because of all the people who don’t understand they are having their 2:00 AM argument outside what is basically a building full of people trying to sleep. How self-centered can you get, eh? I hung on until 5:00 and gave in. Watched some stupid TV from the USA (you people have no idea your country is metaphorically burning, do you?) and eventually got ready to check out.

But the appointment with the specialist wasn’t until 1:30, so again I have hours to kill. Again I go to stores and have small success at getting anything. I even filled up the gas tank and did the shopping I was going to do after seeing the doctor so I could just leave from there and go home. Home was sounding really good.

The doctor wasn’t much help, which was no surprise. We went over the whole EIGHT YEAR history again. He looked at the other doctors’ reports and did what any self-respecting physician does when he doesn’t know what to do: ordered more tests. Also tried to palm me off on another specialist AGAIN, just as the other specialist tried. You know, I’ve seen four doctors who have each specifically said “don’t worry, we’ll get to the bottom of this” and none of them have. Three of them gave up, in fact. This time, acting on some pretty firm insistence from me, I may get referred back to the neurologist with a notation to specifically check for signs of MS. I’m not holding my breath waiting for that to happen, though.

The drive home was welcome. I went past the latest ‘local’ wildfire which was being whipped up by the winds. By the time I got home the highway had been closed due to the fire, so lucky me. It was under control by morning though. Here’s a shot I took of it:

100_0353

And now … nothing. A whole lot of it until there’s something. Maybe another Big Bang which will create a new universe while destroying this one. I’m all for it.

Addendum: I managed to sign up for on-line viewing of my health records. There’s a disturbingly large amount, just after moving to this area. I can see the visit records, test results, and some consultation reports. The latest one on the respiratory test is there, and it says just what the respirologist said; weakened breathing muscles but good lung function. Over-all it sounds a lot like something weird going on with the muscles, but since they’ve looked at that (save a biopsy) the second choice would be a nerve problem. So we’re back to “probably MS”.