Wednesday, 22 November 2017

Only Three Days To Go

It's getting busy for me today. Already I have seen the psychiatric nurse. She interviewed me in advance of my seeing the psychiatrist. They've also taken out my catheter. We are all wondering how  my bladder will do now that it is working on its own. Most likely I will have to endure some level of "in and out" catheterization, depending on how well my bladder empties itself. And all of this before lunch.

The visit with the psychiatric nurse was interesting, and long. She interviewed me in some depth about my life, my childhood, my career, my family. She asked about traumatic events in my life, which brought to mind my college friend Bert Menger, the one who was murdered at a riverside camp I was asked to attend but couldn't because of work. She asked me a lot of questions about how I feel about living with ALS, and what other options I have considered for dying. This whole process was a bit emotional for me, bringing a tear or two to my eyes. To reveal ones life in vulnerability is daunting.

After lunch the nurses will give me a sponge bath. It's not as much fun as it sounds, however the nurses, both male and female, are nice enough. The usually chat to each other, paying no attention to me whatsoever, other than the routine of wiping and drying. Once I am cleaned up, I am going to get into my wheelchair, with their help. My friend Albert is coming at 2:30 PM. We'll go downstairs to Good Earth Coffee for a coffee and a date square, then we will practice our trivia knowledge with some Trivial Pursuit cards.

We are slowly working towards my release on Saturday. No particular time has been set. It will depend on when I get my last shot of antibiotics. They've been doing them every day at 5:00 PM so far, but I am hoping we can get it done at noon so I can get home. My apartment is likely a bit of a mess. There is laundry, some of it urine soaked, which has been sitting for a couple of weeks. I've already been in here for 10 days this time and it will be a full two weeks by the time I get out.

There is no doubt. I am looking forward to getting home, to sleeping in my own bed, to eating my own food, to enjoying my quiet space. I'm looking forward to visits not stilted by the presence of hospital gear or me in bed. I\m looking forward to a nice glass of wine with dinner. Only three days to go.

Tuesday, 21 November 2017

Grey Sky

I'm feeling a bit more like writing today. I don't know if it's the indolence and sloth that arises out of spending all day, every day, in a hospital bed, getting out into my wheelchair only on occasion; or if is the gloomy grey skies that spead from east to west, blotting out the sun but for a faint glow behind the sky's skin of cloudy steel. Either way, I just have not had the motivation or stimulation to write.

When I say stimulation, I mean that very little is happening to me here in hospital. They kept me here for my own sake, a response to my immobility, thinking it would be better to treat me in hospital rather than asking me to go back and forth from here on a daily basis, and that it would be easier to transfer me to the ALS Clinic and the ENT Clinic from hosital, rather than from home, given the foley catheter and IV line for antibiotics. Between these few events, I mostly sleep, read, or watch Netflix.

Nonetheless, I cannot claim this rest has not been good for me. Even with all the night noises and interruptions, I am getting almost enough sleep. More importantly, my body has the time and energy to finally heal itself. Were I at home, I would be active, wearing myself, using my energy to do things instead of to heal. I am definitely healing. For one thing, I don't think I have seen my urine so clear in months. I am used to it being clouded, at times with a bit of blood in it. Not now, and this convinces me I have been fighting infection for a long time.

I know that the grey goss sky, a flat cap walling off the sky from space, the earth from sun, will pass, most likely in a day or so. By the time I go home on Saturday I am hoping to feel even better than I do now, to have improved in energy and health. I may have ALS, but I don't have to feel bad to go with it.

Monday, 20 November 2017


I didn't write yesterday. I didn't feel up to it. I don't really feel like writing today either. Maybe I am running out of things to say. Maybe my hospital life is so routine, so boring, that there is nothing to say about it. I am slowly getting better, but that is to be expected. The laxitives are doing their work. The catheter remains in without event. The hospital staff are excellent, caring, and careful. There is little to say.

Plus, I'm tired a lot right now. The other night I did not sleep well, so it will take a few days for me to regain that lost energy. Maybe that's what it is. Regardless, I feel like I have nothing to say, so that's what I will say. Nothing.

Saturday, 18 November 2017

Looking Out The Window

My days in here are tedious, long hours spent mostly sleeping or watching Netflix on my laptop. I am so grateful for the technology which allows me to escape the desert wasteland of commercial TV, especially the major broadcasters. At least the hours I fill, I fill with something I want to watch instead of forced reruns of bad sitcoms and poorly written television drama. Still, there is only so much distraction one can take.

The medication process has become routine, closely matching my life at home, with pills in the morning and pills in the evening, along with injections of antibiotics into my IV once a day. I've not had a bowel movement for several days now, so we have added Metamucil and a laxitive to my daily routine as of yesterday. I, along with all the hospital staff and doctors, am hoping for results in the near term. Personally I think my bowels have gone on strike, in opposition to the indignity of the expectation that I should fill a diaper rather than go to the toilet on the commode chair. The nurses and staff are having trouble with the chair, and would rather clean me up than make the transfer.

On the upside, the lady in the bed next to me has been moved. Her departure means it is possible for me to move next to the window, a highlight for me. She has had a serious stroke and I suspect she has been moved to some sort of long term or rehabilitation setting. For the first time since getting into the hospital, I can see the outside world, a true bit of joy for me. Once again I get to see the outside world, to know that my existence extends beyond my curtained space.

Since it is Saturday today, I am expecting any number of visitors. I have declined to go into my wheelchair for the moment, hoping to leave that seat for guests. Once things settle down, I will likely get in the chair, perhaps later in the afternoon, and head down to the Good Earth Coffee Shop in the lobby for a coffee and date square.

Then comes Sunday, then the rest of the week until Friday. It is what must be done.

Friday, 17 November 2017

Bite Your Tongue

My time in hospital has not been relegated solely to the issues of belly problems and vertigo. I went to the ALS clinic on Wednesday. The major reason was to get the MAID process underway, however there were also the usual checks and measurements, one of which is significant.

I have been complaining for some time about loss of fine muscle control of my tongue and lips, especially on the left side of my face, in fact exclusively on the left side of my face. Some around me have dismissed this complaint, telling me I eat too fast, that I should chew more carefully, or that I needed to take smaller bites. What most of them failed to see completely is that my chewing, bite size and speed of eating has remained unchanged for the last 40 plus years, and rarely did I bite myself over those many years.

In the last month or so I have also noticed the slightest feeling of wieght increase on the left side of my mouth. My lips just feel heavier on that side. So I asked the neurologist about it and he confirmed that I have muscle loss on the left of my face. I've also noticed fasiculations across the bridge of my nose, of all places. This confirms that ALS has been attacking my face for quite some time now.

The real horror of this is that I am now forwarned. After ALS has pretty much destroyed my arms, it will go after my head and neck, destroying my ability to eat, drink, speak, even nod my head. It has already started. I will lose all ability to communicate, since, by that time, my hands will have failed me completely. This will be a slow process, giving me the continued ability to know, understand, and feel the pain of this loss daily.

Next time I say something is failing me, please put aside your dismissal and keep your opinions to yourself. If I say something is happening, even if you can't see it, even if you don't believe it, even if you want to find another excuse for it, believe me and try to understand what I feel. Nobody knows my body better than me. My hands shake because of ALS, not aging. My arms are weak from ALS, not lack of exercise. My hands shake because of ALS, not because I am getting old. I bite my tongue and lips because of ALS, not because of how I eat.

Thursday, 16 November 2017

Nine More Days

Well, it's confirmed. I will be in hospital until at least November 25. The intent is to keep me on IV antibiotics as well as keeping a Foley catheter inserted in me until at least sometime next week. It means continuing to deal with being stuck in bed, although I hope to change that today. I have my manual chair here, so at least I can get out for a coffee in the Good Earth cafe downstairs. It means having to poop in a diaper, since they can't figure out how to transfer me to the toilet safely, and it's a lot less work for the nurses to clean me up rather than to transfer me back and forth.

All in all, hospital time is tedious. Hours and hours of nothing but interruption. I need help turning over in the hospital bed; this bed is not wide enough for me to roll over. They put meals in front of me which I can barely tolerate; non-existent breakfast, mediocre lunch with dry sandwiches, and dinners which defy description at times. To be a food lover while in hospital is a terrible kind of torture.

I think the toughest thing is feeling trapped, both physcially and psychically. While I have my wheelchair here, there is no chance for me to go anywere but down the hospital hallways, past rooms of patients equally as trapped as I am. From my bed I cannot see a window, see outside. The curtain separating me from the second bed in my room blocks the window.

Speaking of second beds, there is an elderly woman in the other bed in this two bed room, laughingly called semi-private. There is nothing private, even semi-private about this or virtually any other hospital room, unless you are one of the rich and powerful. For them, they have single rooms with private, attached bathrooms. The elderly woman on the other side of the curtain doesn't care. She has had a serious stroke, potentially and likely fatal. Her family is constantly coming and going, as they should, getting that one last visit in with mother or grandmother as it may be.

In another 9 days I will return home, to whatever state it may be in. I left it in a mess, thanks to ambulance crews and a lack of planning. But then again, these kinds of hospital trips are not often planned. No matter. Home Care will come and tidy up. I can do laundry. The fridge will have to be emptied, spoiled food thrown out. I'll be busy when I get home. That's something to look forward to.

Wednesday, 15 November 2017

War Is Hell

It's been a tough day today. It was a bad night last night, which is mostly why today was tough. I slept very little, fitfully when I did, for short stints of perhaps an hour at best. My bladder is acting up again and the hospital staff have no clue when it comes to handling external catheters. So I was peeing almost constantly, soaking pad after pad after pad. My nausea was no better, not was my dizziness any better. It all continued by day.

It now seems to be the opinion of the medical team that we should treat this continuing low grade bladder infection seriously, thanks to a bout of fever last night. They are concerned it could break out into a full fledged infection and possible sepsis. It's happened before. What they will do differently this time is treat the infection agressively, with IV antibiotics over a period of 10 days or so, basically going to war against my own bladder. At the same time they will keep me on an inserted foley catheter to maintain bladder drainage.

This approach mostly arises out of the CT scan the other day, or was it yesterday. I don't know anymore, as one day melds into the next. Regardless, the CT scan showed a bladder that was inflamed, retaining urine in pockets of swelling along the bladder wall, urine which hosts all kinds of bacteria, ready to jump up and grow given the least opportunity. The inflamation is so bad that it is affecting the rest of my internals.

They are still concerned about c-difficile. So what they want to do is obliterate the bacteria in my bladder, get the swelling down, and essentially dry it out. Basically they want to give it a rest. What that likely means is another 10 days in hospital, another 10 days of tests and waiting. It's tiring being here; I am sleeping as much as I can whenever I can. As they say, war is hell, especially when you are at war with your own body.