First leg of our journey complete. Air Canada was wonderful; a huge thank you to the Underwood family for getting us here. We were at the gate just in time to be summoned and loaded first on the plane. They did okay when we got to Fort Lauderdale too, although I think the company responsible for that kind of thing had at least eight people helping out. Too many hands!
It's weird getting off the plane and not having to go through customs; I guess we did that at Pearson - we're still wrapping our heads around it. We left the baggage claim to go find a taxi and I am sure we passed by the area where the shooting was last week. Lots of demolition and a fork lift of new drywall going in at 7pm. I'm so sad for all the families involved. Our taxi driver in Toronto had a lot to say about it; he thought that all guns should be destroyed and the world would be a better place. If only it were that easy.
We walked out to a wosh of humidity (23 degrees). It didn't take long to find an accessible taxi, no longer than if we had wanted a regular one. I chuckle when my chair gets all strapped and cranked into the back of the van. Because that's it - just my chair gets strapped in, not me! I don't wear a seatbelt in my chair so I'm not actually attached to the van! The driver in Fort Lauderdale was pretty quiet. But boy was he fast! We asked him to come back tomorrow and take us to the ship. Transport problem solved.
We laughed on the plane. For a moment we thought we were having a "no drive" week. To us, a no drive day means that we don't drive either of our cars. We pat ourselves on the back when it happens (usually only because our road is closed in winter) as it is our contribution to reducing the global carbon footprint. We realized what a joke it was to think we'd be reducing! Look at the tens of thousands of pounds of carbon our flight and cruise ship will be spewing into the air!
The hotel we are staying at tonight has an outdoor pool (of course, it's Florida) and it has a lift! So guess what this pasty white Canadian girl is going to do tomorrow? Yup, swim. The kids were in tonight and claimed that it was cold...so I won't last long. But I'm going in. We lifted the cover to see how it worked and it seemed to not be plugged in. Not seeing an obvious answer we went to the front desk to ask. The response: No joke, "what lift"? The maintenance man knew what I was talking about but he didn't have a clue either (although he took a serious look at it). He said that the Chief Engineer would be in first thing and would have it working for me. "What time would you like to swim?" So nice, these Americans.
This will likely be it for posting until we get home, we opted not to pay $12 per day for Internet. And I apologize for my lack of proof reading; this was all done on my phone!
Anchors away (as they say). We're set and I dare say that I think I am feeling better. Even after a long day of travel I am not a basket case and it's 10pm!
Friday, 13 January 2017
Sunday, 8 January 2017
Sun
I have a new favourite spot to sit in the house. I look out the big window to the north, sit beside the new (remote controlled) propane fireplace and look out at the snow. We have replaced the wood stove in the family room with this new one - it's a whole lot safer for me and it means I don't have to rely on someone being here to load it with wood. One click of a button and I have heat to my space - where I can stand in my standing frame and ride my "bike". I am 7/7 for my standing frame resolution. So far, so good.
I made the kids put on their snowshoes today, because it is something that I would have done on a day like today. Roads closed, lots of snow - what else is there to do but ski or snowshoe? I loved to put on my snowshoes and just go anywhere - no groomed trail required. Facebook has been an evil thing to me lately because I see all the pictures of my friends who love the outdoors - out there on their snowshoes, breaking trail. How I yearn to be out with them. In my previous life I would have been, no matter what marking needed to be done, or what was on the calendar, I would be out there, sweating in my layers and loving every minute. It breaks my heart knowing that I will never be able to do that again. I have yet to figure out how to fit a snowshoe on a wheelchair.
Today I shovelled; all of about ten square feet, but I did it. It was an experiment to see how I could manage in this deep snow. My Mountain Trike works relatively well, but it's hard to steer tight corners, so the small space at the end of the ramp was all I was able to manage. It was a start. And I was out in the sun. Cold winter sun, but sun nonetheless.
Speaking of sun...I heard it's going to be 24 in Florida next week. Good thing, because that is where we will be :) That was the big surprize for the kids at Christmas, we are going on a five night Caribbean cruise. It is not at all something we would have done before - we were more the hiking/camping/canoeing type of family - but things have changed, and so we must change our way of thinking, being and spending.
My friends-who-use-chairs say that cruising is the most accessible holiday that there is. The ships are governed under US laws, therefore the Americans with Disabilities Act comes into play - laws that put our similar (but not equal) Ontario laws to shame. And from what I hear the staff on these ships go above and beyond to help those who need it.
I look forward to the food, and not in the eat-all-the- ice cream-possible way you might think. I look forward to piling my plate with salads, protein and fruit; things that are harder to come by this time of year. I have been not doing so well with "clean eating" - pretty hard when the house is full of sweets. I have bought a book that is a guide to diet and SCI - reading it has caused me to be hard on myself, but I have learned some too, I'm maybe not as bad as I might think.
So we are off for some sun. Today was a day to pack. Tomorrow I get my botox done again - here's hoping we can get to Owen Sound. The house/cat sitter/snow remover is arranged. The airline and hotels know I'm coming - I have very high expectations for an accessible Air Canada, let's hope they live up to them.
We're off!
I made the kids put on their snowshoes today, because it is something that I would have done on a day like today. Roads closed, lots of snow - what else is there to do but ski or snowshoe? I loved to put on my snowshoes and just go anywhere - no groomed trail required. Facebook has been an evil thing to me lately because I see all the pictures of my friends who love the outdoors - out there on their snowshoes, breaking trail. How I yearn to be out with them. In my previous life I would have been, no matter what marking needed to be done, or what was on the calendar, I would be out there, sweating in my layers and loving every minute. It breaks my heart knowing that I will never be able to do that again. I have yet to figure out how to fit a snowshoe on a wheelchair.
Today I shovelled; all of about ten square feet, but I did it. It was an experiment to see how I could manage in this deep snow. My Mountain Trike works relatively well, but it's hard to steer tight corners, so the small space at the end of the ramp was all I was able to manage. It was a start. And I was out in the sun. Cold winter sun, but sun nonetheless.
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| This was taken later in the day...the sun had gone and the snow was beginning again. The part I shoveled was from the driver's door of my car to the end of the ramp. I have a long way to go before I am of much help on the snow removal front. |
Speaking of sun...I heard it's going to be 24 in Florida next week. Good thing, because that is where we will be :) That was the big surprize for the kids at Christmas, we are going on a five night Caribbean cruise. It is not at all something we would have done before - we were more the hiking/camping/canoeing type of family - but things have changed, and so we must change our way of thinking, being and spending.
My friends-who-use-chairs say that cruising is the most accessible holiday that there is. The ships are governed under US laws, therefore the Americans with Disabilities Act comes into play - laws that put our similar (but not equal) Ontario laws to shame. And from what I hear the staff on these ships go above and beyond to help those who need it.
I look forward to the food, and not in the eat-all-the- ice cream-possible way you might think. I look forward to piling my plate with salads, protein and fruit; things that are harder to come by this time of year. I have been not doing so well with "clean eating" - pretty hard when the house is full of sweets. I have bought a book that is a guide to diet and SCI - reading it has caused me to be hard on myself, but I have learned some too, I'm maybe not as bad as I might think.
So we are off for some sun. Today was a day to pack. Tomorrow I get my botox done again - here's hoping we can get to Owen Sound. The house/cat sitter/snow remover is arranged. The airline and hotels know I'm coming - I have very high expectations for an accessible Air Canada, let's hope they live up to them.
We're off!
Friday, 6 January 2017
Dark days, darker nights
I have started this post many, many times, but mostly in my head. I have not actually been writing because, frankly, I have had nothing to say. Nothing good that is. I did not want to write about how crappy I felt, how absolutely miserable, full of pain in my body and darkness in my mind I have been for the past months. Feeling like there is no way I can continue to live feeling like this. It was just not possible. So I didn't write. Because this is what it has been like.
Barely able to make it to bed before falling apart, usually in tears. UTI after UTI. I scarcely remembering what it felt like to not have an infection, to not hurt. To have my feet feel like they are immersed in a bucket filled with icy water. Or the nights the nerve pain made my feet felt like they were squeezed into size 6 shoes for a full day (I wear an 8). My T4 line pain like a burning hot belt pulled tightly around my chest - to the point where I could feel every breath, every heartbeat all the way around. Cancelling appointments. Doing nothing that I didn't absolutely have to do. Nothing but watching Netflix and sleeping until 11am - so not me.
Pain sucks the life out of the living.
All the while I am trying to understand, to figure out why do I feel so awful? I had many months of feeling "good". Why, now, is the pain so bad? What is different? What did I do/not do that I should/shouldn't have done? What did I eat that I shouldn't have? Is is the weather? Is it an infection? What am I not doing that I should be? And worst of all, is it all in my head? It is known that thinking of pain makes the pain even more pronounced. Am I bringing this all on myself? And then my head goes down the road to the future...how will I ever do the things I have planned, travel, work, contribute to society? How?
Dark days and even darker nights. I last, without tears, until about 8pm. After that all bets are off and you would not want to keep my company. Christmas didn't even cheer me up for long.
So what's the deal?
I have no idea.
I have taken no fewer than three urine samples for analysis. All were negative. What? Yeah right. Try again. I got to the point of saying "when you dip it, it will be negative. You have to do a CNS (plate it) and it will grow something." Here I am, telling the professionals how to do their jobs. I was beginning to feel like a real pain in the ass. Twice to emerg. A total hypochondriac. But I knew something was wrong. I could feel it. BUT because my body is so fucked up, it could not tell me what was going on. What was wrong.
Guess what?
I still don't know.
My doctor called yesterday and we had a good chat. No infection. I no longer feel like a hypochondriac, nor a pain in the ass. But I still have no answers. I think I am coming out of this darkness. I think this only because I have felt okay for three days now. Not three in a row mind you, but three out of at least 30. I keep a calendar where I track pain and meds and any crazy shit that my body does. I was, back in November, tracking the days that I had particularly bad nerve pain. Well, I stopped tracking the bad days and instead tracked the good days, which was easier to do. Because there were none. Back at that time the pain was the effect of infection after infection. Three in fact, back to back. So naturally in the end of December I assumed that's what it was.
Now, I think that it was a virus. Or maybe an allergic reaction to the antibiotics (as would explain the hives that have come every night for the past two weeks) and goodness knows my poor gut is feeling the effects of those.
So now I am trying to make my head think that I am coming out of this darkness. I have to be. It was one (maybe two?) months out of 18. I'm no mathie, but in the grand scheme of things, that's not a large ratio. It is so hard to find perspective. The gains are small now compared to what they were at the beginning, and lord knows my expectations are still high, but good things, improvements are still happening. It's just hard to see them. Hard to remember them.
That's where my people come into play. To give me love. Hugs. To remind me that things are happening, getting better. Stronger. Like how, just in the past five days, I have been able to stand in my standing frame without my head spinning (hardly at all). I still need my people. I can't do this alone and my poor family, well they need love and hugs too. What am I saying? Everyone does.
It's funny how writing helps. I manage to spin all these thoughts in my head into words. Words that, in order to reflect accurately what it in my head, should be dark and scary. Moreso now than ever. But here I am, again, trying to find something good. Flipping it. Do I do that because I am writing and others are reading? Or do I do that because I know it will help me feel better. Maybe a bit of both.
And, now I will remind myself that, the sun will come again.
It can't stay dark forever.
(I wish I could remember this when I need it most.)
Barely able to make it to bed before falling apart, usually in tears. UTI after UTI. I scarcely remembering what it felt like to not have an infection, to not hurt. To have my feet feel like they are immersed in a bucket filled with icy water. Or the nights the nerve pain made my feet felt like they were squeezed into size 6 shoes for a full day (I wear an 8). My T4 line pain like a burning hot belt pulled tightly around my chest - to the point where I could feel every breath, every heartbeat all the way around. Cancelling appointments. Doing nothing that I didn't absolutely have to do. Nothing but watching Netflix and sleeping until 11am - so not me.
Pain sucks the life out of the living.
All the while I am trying to understand, to figure out why do I feel so awful? I had many months of feeling "good". Why, now, is the pain so bad? What is different? What did I do/not do that I should/shouldn't have done? What did I eat that I shouldn't have? Is is the weather? Is it an infection? What am I not doing that I should be? And worst of all, is it all in my head? It is known that thinking of pain makes the pain even more pronounced. Am I bringing this all on myself? And then my head goes down the road to the future...how will I ever do the things I have planned, travel, work, contribute to society? How?
Dark days and even darker nights. I last, without tears, until about 8pm. After that all bets are off and you would not want to keep my company. Christmas didn't even cheer me up for long.
So what's the deal?
I have no idea.
I have taken no fewer than three urine samples for analysis. All were negative. What? Yeah right. Try again. I got to the point of saying "when you dip it, it will be negative. You have to do a CNS (plate it) and it will grow something." Here I am, telling the professionals how to do their jobs. I was beginning to feel like a real pain in the ass. Twice to emerg. A total hypochondriac. But I knew something was wrong. I could feel it. BUT because my body is so fucked up, it could not tell me what was going on. What was wrong.
Guess what?
I still don't know.
My doctor called yesterday and we had a good chat. No infection. I no longer feel like a hypochondriac, nor a pain in the ass. But I still have no answers. I think I am coming out of this darkness. I think this only because I have felt okay for three days now. Not three in a row mind you, but three out of at least 30. I keep a calendar where I track pain and meds and any crazy shit that my body does. I was, back in November, tracking the days that I had particularly bad nerve pain. Well, I stopped tracking the bad days and instead tracked the good days, which was easier to do. Because there were none. Back at that time the pain was the effect of infection after infection. Three in fact, back to back. So naturally in the end of December I assumed that's what it was.
Now, I think that it was a virus. Or maybe an allergic reaction to the antibiotics (as would explain the hives that have come every night for the past two weeks) and goodness knows my poor gut is feeling the effects of those.
So now I am trying to make my head think that I am coming out of this darkness. I have to be. It was one (maybe two?) months out of 18. I'm no mathie, but in the grand scheme of things, that's not a large ratio. It is so hard to find perspective. The gains are small now compared to what they were at the beginning, and lord knows my expectations are still high, but good things, improvements are still happening. It's just hard to see them. Hard to remember them.
That's where my people come into play. To give me love. Hugs. To remind me that things are happening, getting better. Stronger. Like how, just in the past five days, I have been able to stand in my standing frame without my head spinning (hardly at all). I still need my people. I can't do this alone and my poor family, well they need love and hugs too. What am I saying? Everyone does.
It's funny how writing helps. I manage to spin all these thoughts in my head into words. Words that, in order to reflect accurately what it in my head, should be dark and scary. Moreso now than ever. But here I am, again, trying to find something good. Flipping it. Do I do that because I am writing and others are reading? Or do I do that because I know it will help me feel better. Maybe a bit of both.
And, now I will remind myself that, the sun will come again.
It can't stay dark forever.
(I wish I could remember this when I need it most.)
 |
| One of the kids took this picture for me last month. It is the sun rising in the east, through the kitchen window. Windows that I can't see out of because of their height. Not that I could get of of be early enough to witness it anyway. |
Thursday, 15 December 2016
There is no smoking gun
Knowledge is power. Or so they say. For me knowledge always comes with more questions. Well yesterday came with some answers, but even the doctors who know best do not know all. My trip to my physiatrist was productive, helped me understand some things about pain and UTIs, and it was nice to hear that I am doing things right. And that I need to keep going; especially with my FES bike.
Pain, especially nerve pain, has a connection to activity. The amount of activity done that day, the day before or even before that. For me reducing pain may mean reducing activity; especially when I am fighting something. This is so hard to do.
As for the UTIs, there is nothing that I am doing "wrong". The problem is the catheters. Even though I use a sterile catheter each time, the human body does not like them. You see the urethra is a one way track from the bladder to the outside of the body. Urine flushes that passageway every time you pee. Everytime I use a catheter it is traveling in the wrong direction. Bringing along everything it grabs on to. That's just the way it is. There is nothing else to be done. There is no smoking gun, nothing else that I can do to prevent them from happening. Nothing that I can change.
Apparently it just takes time. My doctor said he has no patients that have chronic infections, not past two or three years post accident. I am not alone in this, it is very common amongst new SCI people. Once again it just takes time. They don't know what causes the change, but it will happen. The body adjusts, somehow.
In the meantime, I have to go this route. Imagine what these are doing to my gut? And getting the right one also takes time. Dropping a sample off at the lab and waiting for results takes minimum 48 hours, and while I wait I am given one that might be the right one....
Pain, especially nerve pain, has a connection to activity. The amount of activity done that day, the day before or even before that. For me reducing pain may mean reducing activity; especially when I am fighting something. This is so hard to do.
As for the UTIs, there is nothing that I am doing "wrong". The problem is the catheters. Even though I use a sterile catheter each time, the human body does not like them. You see the urethra is a one way track from the bladder to the outside of the body. Urine flushes that passageway every time you pee. Everytime I use a catheter it is traveling in the wrong direction. Bringing along everything it grabs on to. That's just the way it is. There is nothing else to be done. There is no smoking gun, nothing else that I can do to prevent them from happening. Nothing that I can change.
Apparently it just takes time. My doctor said he has no patients that have chronic infections, not past two or three years post accident. I am not alone in this, it is very common amongst new SCI people. Once again it just takes time. They don't know what causes the change, but it will happen. The body adjusts, somehow.
In the meantime, I have to go this route. Imagine what these are doing to my gut? And getting the right one also takes time. Dropping a sample off at the lab and waiting for results takes minimum 48 hours, and while I wait I am given one that might be the right one....
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| My selection of antibiotics from the last month or so. |
On another (less depressing) note, I fell out of my shower chair this morning. I was leaning down to pick up my nightgown without my brakes on. I was close to the floor when it happened, and it was pretty slow motion, so I wasn't hurt. Bill, Mark and I have not been working on naked floor to chair transfers (nor will we be anytime soon) so good thing Theo was around to help me up! No harm done and lesson learned. Someone else can pick up my pajamas!
Monday, 12 December 2016
A stocking stuffer for safer cycling
The whole purpose of Share the Road is advocacy. Making governments (Provincial and Municipal) sit up and listen. Listen to the stories (like mine) that will make them understand that changes are needed in order to make cycling safer.
On Wednesday last week, I was thrilled to be a part of the group who presented the Huron County Cycling Strategy to County Council. We started out presenting the Strategy to the members of council, then we handed out bumper stickers and a couple of us spoke in support. Then they voted, unanimously, to start implementing the recommendations! What a great feeling that was for all those involved.
After we left council chambers I got "swept up" in a media frenzie! A couple of the local radio stations were there, waiting to hear the outcome and they wanted to speak to me after. It was a bit surreal - being pulled away from my friends to speak into the microphone. The Beach did a great job splicing my random comments together :)
My point, I guess, is that we would not have been able to do this so quickly or so effectively without the support of Share the Road. When our friend Erin designed the bumper sticker after my collision we knew about Share the Road, but I (for one) did not know how much work they had already done to make cycling safer. Now, we know first hand. Because of the workshops they did in Huron County last spring, we have full support of County Council to form a Cycling Advisory Committee. One of the Councilors said "We can not get that signage up fast enough". Change is going to happen.
So when Jamie, ED of the Share the Road, asked me if they could use our bumper stickers for their Winter Campaign I hooked her up with Ken at Blyth Printing and voila! We now have magnets! I know not everyone wants to put a sticker on their car (ahem, Elaine) so we made beautiful magnets that you can move from your summer car to your winter car anytime you like!
So please, if you have not yet exhausted your charitable donations for the year, support Share the Road. You will be helping make change in Ontario. Roads will be safer for cyclists - because that is you, me, your kids, siblings, parents and your friends.
Friday, 9 December 2016
Not fit for human consumption
Sometimes, if I sit for long enough in my la-z-boy watching netflix, I can forget about my paralysis. Almost. Until I have to get up. I put down the foot rest and upright my chair. Then I wait for the spastisity to relax. [It's gotten a bit better because I am back on the meds I was on before, but it's not gone because I have yet another (or perhaps the same) infection.] I haul my butt up the slider board and back into my wheelchair. Bed time.
It's the night before a "bathroom" day which means I get a nightcap of milk of magnesia. When I was teaching science we used to have some in the chemical storage room. I used it in an experiment once and was highly doubtful that it existed for the purposes of human consumption. Well, it is, because people (like me) consume it. That doesn't mean it is fit for consumption. It makes me want to gag and feel nauseous for a little while, but it does it's job (usually).
The other substance I have been consuming regularly are the UTI drops. I have been told that they could be used as an air freshener (because they are so strong) or as something to clear one's sinuses. They were working for me, but then something changed. I am not really sure what that was, but I know that the company is backing them. I got a message today from the representative that said she was sending me two bottles of the "old stock" that I had been using before. She found it in a warehouse in Alberta and she was putting them in the mail to me free of charge. I quite respect how much they have stood behind their product. I sure hope these ones help me break this infection streak.
The other beverage that is supposed to help with UTIs is cranberry. Yes, you can take concentrated cranberry pills, but there is no regulation about how much actual cranberry is in them. I asked Oliver to pour me a glass the other day and he said "I dare you to drink it without making a face!" This is the unsweetened juice, face puckering stuff. It's expensive too - pure just no sugar - for about $9.00! I would pay anything to feel better. The active ingredient that makes the difference (prevents bacteria from adhering to the wall of the bladder) is D-Mannose. It also comes as a supplement. It's a form of sugar, but it doesn't act like a sugar. It, for one, does not taste awful.
Since I stopped taking my pain pill at night I don't fall asleep like I used to. I did not realize until a few days ago that there was a connection. It must make me woozy enough to fall asleep quickly. I have been trying to meditate in lieu of drugs, but that does not happen very regularly. I refuse to start taking sleeping pills again, they make me super groggy in the morning. So what am I left with? Melatonin seems to help but I am afraid of what it might be doing to my teeth. It is supposed to hangout under your tongue (good blood circulation there) which it does. If it stays there all night (unless you talk in your sleep) then you are left with the chalky substance filming your teeth. Which reminds me I need to get back to see Dr. Lee...
Blogger keeps sending me info about how I could make money with my blog. Not sure that this post would help improve my ad revenue...
It's the night before a "bathroom" day which means I get a nightcap of milk of magnesia. When I was teaching science we used to have some in the chemical storage room. I used it in an experiment once and was highly doubtful that it existed for the purposes of human consumption. Well, it is, because people (like me) consume it. That doesn't mean it is fit for consumption. It makes me want to gag and feel nauseous for a little while, but it does it's job (usually).
The other substance I have been consuming regularly are the UTI drops. I have been told that they could be used as an air freshener (because they are so strong) or as something to clear one's sinuses. They were working for me, but then something changed. I am not really sure what that was, but I know that the company is backing them. I got a message today from the representative that said she was sending me two bottles of the "old stock" that I had been using before. She found it in a warehouse in Alberta and she was putting them in the mail to me free of charge. I quite respect how much they have stood behind their product. I sure hope these ones help me break this infection streak.
The other beverage that is supposed to help with UTIs is cranberry. Yes, you can take concentrated cranberry pills, but there is no regulation about how much actual cranberry is in them. I asked Oliver to pour me a glass the other day and he said "I dare you to drink it without making a face!" This is the unsweetened juice, face puckering stuff. It's expensive too - pure just no sugar - for about $9.00! I would pay anything to feel better. The active ingredient that makes the difference (prevents bacteria from adhering to the wall of the bladder) is D-Mannose. It also comes as a supplement. It's a form of sugar, but it doesn't act like a sugar. It, for one, does not taste awful.
Since I stopped taking my pain pill at night I don't fall asleep like I used to. I did not realize until a few days ago that there was a connection. It must make me woozy enough to fall asleep quickly. I have been trying to meditate in lieu of drugs, but that does not happen very regularly. I refuse to start taking sleeping pills again, they make me super groggy in the morning. So what am I left with? Melatonin seems to help but I am afraid of what it might be doing to my teeth. It is supposed to hangout under your tongue (good blood circulation there) which it does. If it stays there all night (unless you talk in your sleep) then you are left with the chalky substance filming your teeth. Which reminds me I need to get back to see Dr. Lee...
Blogger keeps sending me info about how I could make money with my blog. Not sure that this post would help improve my ad revenue...
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| This is my collection of just some of the things I have to take... |
Friday, 2 December 2016
How would you rate your pain?
"On a scale of 1 to 10 how would you rate your pain?" Have you ever been asked this question before? I can not count the number of times I have been asked this question is the last 16 months. And who can answer it accurately anyway? Is that even possible? It depends; are you in childbirth which, we all know, comes to an end? Or are we facing something that we have never faced before and will likely never see the end of? Are you tough or are you a wimp? What has been your life experience? How healthcare providers can gather any accurate information from this question is beyond me. Not all pain was created or can be treated equally. This last part is what I am still learning. What is this pain from? Is this crap I have another infection pain or is it from a balls to the walls workout?
For months now I have been wanting to get off of the painkilling narcotics that I have been on. These drugs with their magical nerve blocking effects, as you likely know, have their downfalls. For starters these are the drugs that have the "do not operate heavy machinery" red labels because of the foggy haze that they cause in your brain. Then, of course, they constipate which, when you already have a neurogenic bowel disorder, causes additional problems. I feel like they are rotting my teeth because of the dry mouth that I wake with every morning.
Before I left Parkwood I asked how long I would have pain. The doctor said likely for one year. So as that one year mark came and went I kept looking for a sign; something that would tell me it was time that I no longer needed to keep taking those pills for pain. Instead of a sign, along would happen another UTI, and another and another. With each infection the pain comes back, and, as they say, with a vengeance. For whatever reason that is how my body responds to bacteria in my urinary tract - crank up the neuropathic pain. Alas I never did get my sign, just decided it was time to try and remove it from my system.
So I did. I first cut the dose in half; instead of twice a day, just once. Then a week ago, no more. The first thing I noticed was the lack of "hazy brain" that I would often feel in the morning and had been blaming on low blood pressure. Well, it turns out, that was the drugs. I had expected to feel an immediate increase in muscular pain in my back, but that has not happened. What has happened was not expected, and that is the spasticity that I wrote about earlier. It was there all along, but was being blocked by the narcotics.
Today, as I deal with another evening of pain that gives me the chills and causes me to just want to be held, I wonder if it's worth it. Here I have weaned myself off what was 6mg/day to end up having taken 2mg just to get to bedtime. Now this is a Friday, a day after a particularly grueling robotics day, so not every day ends like this. These pills take the chills away, but not that nasty nerve pain, the one that feels like my bra band is on fire.
I don't write about this in order to gain sympathy; my goal is only to inform. In my former life I used to get up at 5:30 to get to the gym or pool and workout to the point of pain or almost vomiting. When Oliver was born he came so fast there was no time for drugs. I can take it. But this is different. Tonight for example, I laid in my la-z-boy and had Oliver balance the Connect Four board on my lap. This way I could spend time with him, we could play, and I would not have to move.
I have developed a healthy respect for those who suffer from chronic pain. I knew nothing about it before and now, here I am, a part of that club.
I hope you never have to join.
Before I left Parkwood I asked how long I would have pain. The doctor said likely for one year. So as that one year mark came and went I kept looking for a sign; something that would tell me it was time that I no longer needed to keep taking those pills for pain. Instead of a sign, along would happen another UTI, and another and another. With each infection the pain comes back, and, as they say, with a vengeance. For whatever reason that is how my body responds to bacteria in my urinary tract - crank up the neuropathic pain. Alas I never did get my sign, just decided it was time to try and remove it from my system.
So I did. I first cut the dose in half; instead of twice a day, just once. Then a week ago, no more. The first thing I noticed was the lack of "hazy brain" that I would often feel in the morning and had been blaming on low blood pressure. Well, it turns out, that was the drugs. I had expected to feel an immediate increase in muscular pain in my back, but that has not happened. What has happened was not expected, and that is the spasticity that I wrote about earlier. It was there all along, but was being blocked by the narcotics.
Today, as I deal with another evening of pain that gives me the chills and causes me to just want to be held, I wonder if it's worth it. Here I have weaned myself off what was 6mg/day to end up having taken 2mg just to get to bedtime. Now this is a Friday, a day after a particularly grueling robotics day, so not every day ends like this. These pills take the chills away, but not that nasty nerve pain, the one that feels like my bra band is on fire.
I don't write about this in order to gain sympathy; my goal is only to inform. In my former life I used to get up at 5:30 to get to the gym or pool and workout to the point of pain or almost vomiting. When Oliver was born he came so fast there was no time for drugs. I can take it. But this is different. Tonight for example, I laid in my la-z-boy and had Oliver balance the Connect Four board on my lap. This way I could spend time with him, we could play, and I would not have to move.
I have developed a healthy respect for those who suffer from chronic pain. I knew nothing about it before and now, here I am, a part of that club.
I hope you never have to join.
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