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.

Tuesday, 14 November 2017

Just Not Today

It's conclusive. The doctors are not sure why my belly is hurting. They have no idea why my bowels are acting up so badly. And when it comes to the vertigo, they won't make a conclusion as to the source. There are a couple of options, but neither of them really matters. I have vertigo, and there is nothing they can do about it. In other words, I could have told them that.

The current strategy is to try and figure out what is going on with my belly. The tests show no sign's of c-difficile, even though I had all the right symptoms. Those symptoms are now mostly gone, I think due to the probiotic diet and apple cider vinegar Chris Gordon provided me last weekend. The only remnant symptoms are the lack of bowel control, something which is slowly resolving itself, and the pain in my gut on the left side.

For the bowl control, the elite group of medical professionals here have decided a probiotic diet and some metamucil would be the best approach. For the dizziness, they have recommended I start taking gravol on a regular basis. As to the gut pain, they have scheduled a CT scan to see if I have diverticulitis or some other internal ailment as yet undiscovered.

My own feeling is that all of this began with over-aggressive use of antibiotics. These powerful medications damaged my gut, creating c-difficile like symptoms, along with damaging my inner ear on the right. The only thing that can cure these issues is time, feeding the body proper biotics and rebuilding the biome in my belly.

It reminds me once again of that scene from Star Trek where, in walking into a trepanning, "Bones" McCoy shivers and refers to current medical practice as "barbaric". I have learned once again that there are very few things doctors really cure. They use clumsy tools at times, treating things they can't diagnose all that well, and hoping the body does the real work of curing itself.

This, in no means or in no way, suggests that I don't appreciate or value all that the medical system is doing, or has done for me. It's just a simple recognition that we know so little about our own bodies, so little about the nature of disease or illness, so little about how to help our bodies heal. Our modern tool set has moved is forward from the Dark Ages of medicine, where cures were often worse than disease, and generally had little effect. Medicine in the 21st century has come along way.

Yet even with our modern technology, even with what we are learning about how our bodies function, even with drugs to treat so many diseases, we still have so far to go. There is much to do, and many people are doing it. One day we will have prodedures and treatments which do no harm while doing so much good. One day we will have true cures for cancer, ALS, and so many other diseases. Just not today, when I need it.

Monday, 13 November 2017

Resting As Much As Possible

It's been a long day, difficult and tiring. This being perpetually ill nonsense takes so much out of me. Even now my left butt cheek is sore; I think I might be developing a pressure sore down there somewhere. I'm not real sure, but then again, these days I am not sure of any health factor. I'm not sure how long I will be in here, but it feels like I might be in for a long haul.

The issue is that I have presented with multiple complaints, some of which might be linked to others, some of which might be the outcome of others. It seems my blood work is "a mess" according to the doctor supervising my care. She tells me my white cell count is too high, my red cell count is too low, and there is some sort of bacteria in my blood. On top of that, they are no longer so certain about c-difficile, even though I have all the right symptoms. In other words, they are not certain what is wrong with me, and getting less certain as time goes by.

Today began at 4:00 AM when I was awoken in ER to be told I had a bed. It's upstairs, in the Cardiac Ward. Perhaps this is appropriate as they have been monitoring my heart quite closely. They even had potassium in my IV overnight, working to keep my heart rate steady and to replenish the potassium lost through diarrhea and general illness. They were filling me with water, so much so that attaching an external catheter seems to be the best way to push water out of my system.

As soon as they got me upstairs, I noticed swelling in my left arm. The nursing team suspected that the potassium had impacted my arm, irritating the vein with the IV in it, causing the fluid from the IV to go into my muscles instead of my heart. So they pulled the IV and decided not to put another one in. Part of this decision was based on the fact that I am a "hard poke", meaning its tough to find a workable vein on me. Each IV generally requires three or four pokes to work.

The rest of my day I rested, at least when nursing staff weren't taking vital signs or asking me the same questions I have answered a dozen times already. My friend Albert brought me Timmies and a couple of Honey Crullers for coffee this afternoon. Then Tonny brought me an A&W Burger with both poutine and onion rings for dinner. It was so much better than the stuff they call food here at the hospital.

For now it's a "wait and see" game while the doctors try to figure out how to treat my various symptoms. We don't want more antibiotics with the situation in my gut. There is very little they can do about the vertigo except wait for it to go away. So I will likely be in here longer than hoped for. This is not a bad thing, the decision being that it would be better to treat me here rather than send me home and ask me to go the lab every day for tests. The vertigo shuts that down. So here I will stay, until at least we have some sort of treatment plan. And here I will rest, as much as possible.

Sunday, 12 November 2017

Back In The Saddle Again, Or Hospital If You Will

I'm back in the saddle again, when it comes to my blog. I'm also back in the hospital again. This is becoming an all too regular occurence, calling for an ambulance, coming into the ER, and eventually being taken upstairs for "observation and possible medication." Over the last four weeks I have been in three separate times; once for a bladder infection, once for a follow up complaint which may or may not be c-difficile, and this time for the added fun of vertigo. This does not include the two calls to 911 for help at home.

I went through something like this last fall as well. I wonder if it is related in any way to flu season, or just the geneal time of year. This year the symptoms and complaints have been more challenging. The medications I was given for the original complaint, the bladder infection, seem to have cause a severe stomach issue, most likely c-diff, but maybe not. The antibiotics given to me to combat the bladder infection also seem to have damaged my right inner ear, leaving me incredibly dizzy almost all the time.

This visit, while not what I would call fun, had been better than the previous couple. The hospital staff are taking extra precautions to ensure they don't get sick from me and I don't get sick from the hospital. My HCA's are doing the same. We are all concerned about what is happening to my stomach and body in general.

As is usual with hospitals, the food is less than ideal. I have decided to skip dinner tonight; I simply cant stomach a fake pork roast with fake gravy, a dinner which doesn't even stand up to the quality of Swanson's. On the other hand I am having much better luck with nursing care. They are the kinds of nurses I have come to expect here at Foothills. Certainly there are personality difference, those I prefer and those I do not prefer, but this time I have been mercifully free from the Nurse Ratchett syndrome. Instead of giving me hell for peeing in my diaper because it makes work for them, they have been compassionate, understanding, and helpful in what is, for me, a difficult situation.

I'm hoping to get out in a couple of days. I'm hoping they can figure out what to do with what we are now calling vertigo. I'm hoping they can help me with the pains in my gut. The long and short of this is that I am having "normal person problems" simply compounded by having an ALS body. I'm certainly hoping my body can get better soon.