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....
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

This is my favourite picture from Greg's Ride. You can almost see my whole family as we were setting off on this sunny fall day. Greg's Ride is the major fundraising event that Share the Road puts on each year.

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...

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.