Today was not the best of days. Mostly because it was a bad night, but I don't want to go into the details of that. I am frustrated, angry and disappointed. My nurse Lisa put a fine point on it this morning. She was astute to recognize that I often wear a brave face around here, not showing what is really going on in my head (and heart). She wondered if depression was starting to rear it's ugly head. But I don't think so. I don't always feel the anger, even though it is just below the surface. I would be better off (and I try) to channel the anger. Into something positive. That used to mean doing something like going for a run. But what is my run now?
It is going to be some time before I realize that everything just takes way more time then I think it should. Prime example: dressing. I had my OTA Kelly give me dressing tips this morning, so including rest time and shoes it took 20 minutes. 20 minutes! To get dressed? Yup. My nurse Nicole says I will get much more efficient, but working part-time next year is looking like the most likely outcome of this whole fiasco. I would otherwise not make it before first bell. Eating takes longer too, just because of the awkward angle that I sit at in my bed. Once I get into my own custom wheelchair I expect that will change.
I get also frustrated by the seemingly mixed messages. Like: You need to eat more fibre, maybe you are eating too much fiber, you need a stool softener, maybe that was too much stool softener... And then there is water, need to drink more, need to drink less, especially in the evening, it may be causing the puffiness in your feet... It is a fine balance, and one that seems to not be achievable, I hope to come close, but I do not think it will ever be mastered. My body is not my body. I was a fine tuned machine (for a 41 year old who works full time and has a family). But now my body is a stranger, an alien that does not follow the rules that were laid out by evolution. One that needs drugs to run "properly" and deal with pain.
My Mom's friend Andrea says the best way to deal with crappy days is to find one good thing, and focus on that to get to the end of the day. Here is one: I started my cognitive testing today. It feels like being in grade 3 all over again, the "gifted" test. I find it very interesting because this is the same test that is used in schools to assess our students, the very same test that my own children took. I was pleased with my results from today, apparently I answered two questions correctly that no one ever gets right. I guess my giftedness, at least some of it, is still up there in my head. Thank goodness.
Another good thing happened today, and I cry as I write because it just goes to show how much Theo loves me. He found my wibbly woo bear. This is Ella's small pink fleece blanket with a bear head and arms sewn to it. She is letting me have it for company while I am away from home and I have been sleeping with woo bear over my eyes every night to block out the lights of this strange room. Well I was, until last Sunday when she got swept away with the bedding laundry all the way to London Health Laundry Services. LHLS does all the laundry for all the hospitals around - even Wingham. So you can imagine how many lost items they get. Well Theo made a miracle happen, and he picked up woo bear this morning and brought her back. So tonight I get to sleep a little better. And I guess that makes two good things.
Friday, 11 September 2015
It's Not Just Bikes and Cars
I wish I could say that I was a model citizen when it comes to driving. When I turned 16 and got my 365 my Dad took me to a yet-to-be-built subdivision and said "okay, drive". So I did, and he taught me to do it safely. But I was not a perfect driver. A while back my at my women's group, our meeting opener was "what is your worst driving habit". I don't remember too many of them except for one friend who admitted to driving while pulling out her grey hairs (which she has stopped doing for fear of having no hair left). I admitted to eating my breakfast (bowl of oatmeal or granola) in the car on the way to work. I am pretty sure that at that meeting I said I would stop, but I didn't. There were no oatmeal driving incidents, but that doesn't mean there could not have been. I am pretty sure eating breakfast would lead to a distracted driving charge.
Theo and I have heard from many people who have told us that they have changed how they drive. Giving a wide berth to cyclists and slowing down when it is not safe to pass. Even a self-proclaimed "redneck driving" friend of ours says he has changed how he drives around cyclists. This is Huron County folks, that is big. But it is not big enough, because even people who do know my story have not changed or "make exceptions".
Here is an example. A couple of weeks ago Theo arrived to visit me one evening and he was seething. Now this is a man who is tough to ruffle, so this, of course was quite shocking. He described a distracted driver who was on the phone behind him, driving way too close for comfort. Those of you who live in the area will know that Hwy #4 is stop-and-go with lots of bridge construction. At each bridge there is a stoplight to allow for one-way traffic over the bridge. Theo took a red-light opportunity to get out of his car and go talk to this lady who was behind him. She made many excuses for herself even after he explained that he was on his way to see his wife who was paralyzed after being hit by a car. While he was walking away, she said she knew my story, and that she was sorry. After the bridge she pulled off the road, we assume to finish her conversation and we hope, to think about her driving decisions.
Over the past couple of years at Madill we have been inundated with the idea that we choose our behaviour. And the same applies here. Choice. Make a decision to drive with care, care for the passengers in your car, the people who are taking advantage of the five months of good riding conditions the people whose life requires a horse for transportation. For me, Share the road is not just about bikes vs cars. I know I am up on my soap box here. I originally said this in my interview on Ontario Morning but I think it needs to be said again. And again. Remember that Vidal Sassoon commercial? I'll tell two friends, and you tell two friends, and so on, and so on...We need to share the road with everyone. Not just bikes, but with tractors, pedestrians, horse and buggies, and each other.
So when the province introduced new bike safety laws I thought they were good, a step in the right direction, but it is not enough. Because it's not just bikes and cars.
Theo and I have heard from many people who have told us that they have changed how they drive. Giving a wide berth to cyclists and slowing down when it is not safe to pass. Even a self-proclaimed "redneck driving" friend of ours says he has changed how he drives around cyclists. This is Huron County folks, that is big. But it is not big enough, because even people who do know my story have not changed or "make exceptions".
Here is an example. A couple of weeks ago Theo arrived to visit me one evening and he was seething. Now this is a man who is tough to ruffle, so this, of course was quite shocking. He described a distracted driver who was on the phone behind him, driving way too close for comfort. Those of you who live in the area will know that Hwy #4 is stop-and-go with lots of bridge construction. At each bridge there is a stoplight to allow for one-way traffic over the bridge. Theo took a red-light opportunity to get out of his car and go talk to this lady who was behind him. She made many excuses for herself even after he explained that he was on his way to see his wife who was paralyzed after being hit by a car. While he was walking away, she said she knew my story, and that she was sorry. After the bridge she pulled off the road, we assume to finish her conversation and we hope, to think about her driving decisions.
Over the past couple of years at Madill we have been inundated with the idea that we choose our behaviour. And the same applies here. Choice. Make a decision to drive with care, care for the passengers in your car, the people who are taking advantage of the five months of good riding conditions the people whose life requires a horse for transportation. For me, Share the road is not just about bikes vs cars. I know I am up on my soap box here. I originally said this in my interview on Ontario Morning but I think it needs to be said again. And again. Remember that Vidal Sassoon commercial? I'll tell two friends, and you tell two friends, and so on, and so on...We need to share the road with everyone. Not just bikes, but with tractors, pedestrians, horse and buggies, and each other.
So when the province introduced new bike safety laws I thought they were good, a step in the right direction, but it is not enough. Because it's not just bikes and cars.
Wednesday, 9 September 2015
Ready to Go Home
I am exhausted. What seem like just a few little things, have added up to be a tiring, but accomplished day. Now that I am healed and my brace is off, I am able to do more with my body. It started yesterday in PT. Kristen helped me reach forward while sitting straight-legged on the plinth, and from there I was able to touch and reach past my toes. That felt amazing. I have always been fairly flexible and that has been and will continue to be to my benefit through this recovery and into my new life. Boy, if there is one thing I have learned (and I said this to my fit friends Nancy and Karri-Anne who visited yesterday) being fit and flexible is so important because you never know when you are going to need it.
That increase in flexibility and my new found freedom to reach my toes lead to my curiosity about dressing myself this morning. And so I did. Underwear, leggings, bra, t-shirt, socks AND shoes. I have been doing my "uppers" for a while, but was not able to sit in a position to do my "lowers". I surprised my nurse and the folks down in OT when I told them, but Kelly is still going to come up and give me some pointers and short-cuts, because I was exhausted by the time I was done.
Remember how I said that they often surprize me in the morning and add something to my schedule? Well that happened again today, "Speech" was added - but I quickly learned that the plan is to assess my cognitive abilities to determine if my brain is still the way it used to be. I already know that my word recall speed is not the same and my reading eyes are different, so I am curious to know the outcome. The testing will help me make decisions about returning to work and any help that I may need in the future. Connie was interested in the fact that I was blogging, apparently that is a good sign. :)
After meeting with Connie I went straight to PT where Theo met us so we could try out transferring from chair to car! Now, he was supposed to bring the Kia, but he forgot and got distracted by the need to drive a clean car for Laura whom he brought with him this morning. Apparently living in a car leads it to not being clean enough for company? So anyway, before going outside there was some serious debate about whether or not this would work, as the Element is so much taller. All the worry was for naught - we did it anyway. It certainly was an uphill battle, and there are a lot of dangers to look out for, but I (we - thanks to Barry and Kristen) did it! I think that there will be dangers no matter what car - all those knobs and bits of metal that are inside the car door frame pose serious danger to my back as I can't feel it if I scrape along them as I get into the car. Safety first.
Even though I just wanted Theo to drive away with me in the car, we went back inside to the elevation table. I got all the way up to 65 degrees which is the highest they go! Yahoo! Now Kristen said I have to do it several more times to prove that my bp can handle it, that it wasn't a fluke. You see the whole time I was on the tilt table Theo was telling me about the home assessment that happened yesterday, and about all the changes that would need to be made for me to come home - even for a weekend. So, Kristen's theory is that Theo's talk was what kept my bp up, perhaps I was a bit worked up...I guess we will see.
To top off my day I learned how to do my own catheter. The nurses were all right - I am easy. So when all is said and done, I am ready. I can get dressed, get into and out of a car and pee on my own. What else is there? I am ready to go home. I wish it was that easy.
That increase in flexibility and my new found freedom to reach my toes lead to my curiosity about dressing myself this morning. And so I did. Underwear, leggings, bra, t-shirt, socks AND shoes. I have been doing my "uppers" for a while, but was not able to sit in a position to do my "lowers". I surprised my nurse and the folks down in OT when I told them, but Kelly is still going to come up and give me some pointers and short-cuts, because I was exhausted by the time I was done.
Remember how I said that they often surprize me in the morning and add something to my schedule? Well that happened again today, "Speech" was added - but I quickly learned that the plan is to assess my cognitive abilities to determine if my brain is still the way it used to be. I already know that my word recall speed is not the same and my reading eyes are different, so I am curious to know the outcome. The testing will help me make decisions about returning to work and any help that I may need in the future. Connie was interested in the fact that I was blogging, apparently that is a good sign. :)
After meeting with Connie I went straight to PT where Theo met us so we could try out transferring from chair to car! Now, he was supposed to bring the Kia, but he forgot and got distracted by the need to drive a clean car for Laura whom he brought with him this morning. Apparently living in a car leads it to not being clean enough for company? So anyway, before going outside there was some serious debate about whether or not this would work, as the Element is so much taller. All the worry was for naught - we did it anyway. It certainly was an uphill battle, and there are a lot of dangers to look out for, but I (we - thanks to Barry and Kristen) did it! I think that there will be dangers no matter what car - all those knobs and bits of metal that are inside the car door frame pose serious danger to my back as I can't feel it if I scrape along them as I get into the car. Safety first.
Even though I just wanted Theo to drive away with me in the car, we went back inside to the elevation table. I got all the way up to 65 degrees which is the highest they go! Yahoo! Now Kristen said I have to do it several more times to prove that my bp can handle it, that it wasn't a fluke. You see the whole time I was on the tilt table Theo was telling me about the home assessment that happened yesterday, and about all the changes that would need to be made for me to come home - even for a weekend. So, Kristen's theory is that Theo's talk was what kept my bp up, perhaps I was a bit worked up...I guess we will see.
To top off my day I learned how to do my own catheter. The nurses were all right - I am easy. So when all is said and done, I am ready. I can get dressed, get into and out of a car and pee on my own. What else is there? I am ready to go home. I wish it was that easy.
Sunday, 6 September 2015
How are the Kids?
Yesterday I had a morning visit from my friend Shannon and spent the afternoon with Theo and the kids, and it was great. The kids scootered on the paths out back, we raced (I really thought my wheelchair was faster than it is), we ate from my giant bin of food in the fridge and just enjoyed the day. Everyone helped me do some of my physio homework and the kids got a kick out of how floppy I am (read: laughing hysterically). I wish home was closer and they could come more often, and not just for me. Their laughing, smiling faces bring happiness to others that are here. Children are therapeutic. My old neighbour in bed B says she will always remember the time she watched Oliver crawl right up into my bed and snuggle right in beside me, pure happiness.
Just before they left to get subs to eat in the car on the way home, Oliver said to me that I was lucky. "Oh, why is that?" His response, "You get to lay in bed all day." Which of course made me cry, and I feel awful about that. Awful. Because he was just being a nine year old boy. Then he wished I could trade places with him - which just made me feel sick because of course I imagined that it was him lying in this bed. To which I responded NO WAY. He doesn't get it - he's not there yet, and that is okay, because he is nine. In his mind, lying in bed all day would mean that he would be able to spend even more time memorizing his pokemon cards.
While we were racing, Ella asked me if being in an electric wheelchair was fun. And of course I can't just say yes to her. Instead I said, "if I didn't have to be in one, I probably would be." I don't know why I can't just think like a kid and not take everything so seriously. It's hard.
So "how are the kids" is a pretty common question these days. My response is that they are fine because I don't really know, and I think that they are. Ella understands, I think, but Oliver is not there yet. I am missing Ella's experimentation with make-up phase and Oliver's joy of having new back to school shoes. Things will be different when Mom comes home in a wheelchair, then we'll see how the kids are.
This was the location of the race - behind the dumpsters where are the old hosptial beds go to die.
Just before they left to get subs to eat in the car on the way home, Oliver said to me that I was lucky. "Oh, why is that?" His response, "You get to lay in bed all day." Which of course made me cry, and I feel awful about that. Awful. Because he was just being a nine year old boy. Then he wished I could trade places with him - which just made me feel sick because of course I imagined that it was him lying in this bed. To which I responded NO WAY. He doesn't get it - he's not there yet, and that is okay, because he is nine. In his mind, lying in bed all day would mean that he would be able to spend even more time memorizing his pokemon cards.
While we were racing, Ella asked me if being in an electric wheelchair was fun. And of course I can't just say yes to her. Instead I said, "if I didn't have to be in one, I probably would be." I don't know why I can't just think like a kid and not take everything so seriously. It's hard.
So "how are the kids" is a pretty common question these days. My response is that they are fine because I don't really know, and I think that they are. Ella understands, I think, but Oliver is not there yet. I am missing Ella's experimentation with make-up phase and Oliver's joy of having new back to school shoes. Things will be different when Mom comes home in a wheelchair, then we'll see how the kids are.
Friday, 4 September 2015
And the award goes to...
Patricia came to see me today and asked if I had been taking pictures of my PT/OT work, she was very amazed by it. I said no, not ready yet. But that will be soon.
Finally
I have been behind in my writing these past couple of days. Working through emotions about not going back to work, dealing with an incredibly tired neck that will not allow me to sit up and write and just being plain busy. I am like a retired person who has an appointment and then *poof* the day is gone! (Sorry Mom and Dad, Mary and Bill). A few significant baby steps have happened in the past few days, and all the baby steps add up to make a difference. Finally.
Monday was our "Family Meeting" where my family, the Parkwood Yellow team, Rehab First team and my legal council all came together to discuss what's next. The "it's all about Julie" talk was about 45 min, then we got to ask our own questions, which was nice for us. Solving some things that we identified as puzzles, more than problems. Because that is what our life is like now. A puzzle that has been dumped on the floor, you have no lid to look at and some of the pieces fell through the vent in the floor, never to be seen again. We have hired a few good people to help us put this puzzle together, but we have no idea what the image will look like when it is all done. And about the world of insurance...let's just say my eyes have been opened.
Wednesday was the day of all my follow-up appointments at Victoria Hospital. Plastics liked the look of my forehead, agreed that my nose is a bit crooked and wanted to make sure I could breathe through it. All good. The trauma team wanted to know that my lungs were clear and that the chest tube sites had healed well. Also, all good. Then we saw Dr. R. my spinal surgeon, super nice guy. He asked me if I would be doing cycling safety advocacy in the future, and he offered to help - even giving me his personal email address - Jane says Drs never do that! He was impressed by my rapid healing (on my forehead) and, after looking at my x-rays, said my vertebrae had healed well too. And I quote "you heal well". Which means...drum roll please...that I get to start taking off my brace!! Around here they call it "brace weaning" and by day seven I should be brace free. Here is what brace free will mean: I can get into the pool, I can have a shower, properly. PT and OT will be way more difficult because I will not have a brace to "keep me upright" and the truth about my lack of abs will come out. Scary. I will have to do more too, like learn to do my own catheter and dress the lower part of my body.
The other two bits of progress are that I have got an upgrade of wheelchairs. Now I have an electric chair that has a tilt mechanism which is essential for the low blood pressure days. The electric part of it gives me freedom. I no longer need someone to push me, I can go outside and I don't have to wait for company. Also, in the transportation vein is that I don't need to use the sling and the motorized lift to get in and out of bed any more! Yahoo! I am doing a sliding transfer from bed to chair and back again. I just need someone to supervise my feet and make sure they are where they are supposed to be.
And today, Friday, this just in...I got to do my bathroom business in the bathroom! I won't say more than that except that a tiny part of my dignity was restored today. I also tried reading again today, and with my new dollar store reading glasses and a large print book, it went okay. Note: this sentence was attached to the previous two for a reason. These things all take time...
Stay well, my friends.
Julie
Monday was our "Family Meeting" where my family, the Parkwood Yellow team, Rehab First team and my legal council all came together to discuss what's next. The "it's all about Julie" talk was about 45 min, then we got to ask our own questions, which was nice for us. Solving some things that we identified as puzzles, more than problems. Because that is what our life is like now. A puzzle that has been dumped on the floor, you have no lid to look at and some of the pieces fell through the vent in the floor, never to be seen again. We have hired a few good people to help us put this puzzle together, but we have no idea what the image will look like when it is all done. And about the world of insurance...let's just say my eyes have been opened.
Wednesday was the day of all my follow-up appointments at Victoria Hospital. Plastics liked the look of my forehead, agreed that my nose is a bit crooked and wanted to make sure I could breathe through it. All good. The trauma team wanted to know that my lungs were clear and that the chest tube sites had healed well. Also, all good. Then we saw Dr. R. my spinal surgeon, super nice guy. He asked me if I would be doing cycling safety advocacy in the future, and he offered to help - even giving me his personal email address - Jane says Drs never do that! He was impressed by my rapid healing (on my forehead) and, after looking at my x-rays, said my vertebrae had healed well too. And I quote "you heal well". Which means...drum roll please...that I get to start taking off my brace!! Around here they call it "brace weaning" and by day seven I should be brace free. Here is what brace free will mean: I can get into the pool, I can have a shower, properly. PT and OT will be way more difficult because I will not have a brace to "keep me upright" and the truth about my lack of abs will come out. Scary. I will have to do more too, like learn to do my own catheter and dress the lower part of my body.
The other two bits of progress are that I have got an upgrade of wheelchairs. Now I have an electric chair that has a tilt mechanism which is essential for the low blood pressure days. The electric part of it gives me freedom. I no longer need someone to push me, I can go outside and I don't have to wait for company. Also, in the transportation vein is that I don't need to use the sling and the motorized lift to get in and out of bed any more! Yahoo! I am doing a sliding transfer from bed to chair and back again. I just need someone to supervise my feet and make sure they are where they are supposed to be.
And today, Friday, this just in...I got to do my bathroom business in the bathroom! I won't say more than that except that a tiny part of my dignity was restored today. I also tried reading again today, and with my new dollar store reading glasses and a large print book, it went okay. Note: this sentence was attached to the previous two for a reason. These things all take time...
Stay well, my friends.
Julie
Thursday, 3 September 2015
My Madill Team
Good morning to my Madill Family. For a fleeting moment this morning I thought that I should do a video post for you; take the protective tape off the camera of my chromebook, show you how well my forehead has healed, my slightly off-centre nose and my two new front teeth but we all know that I would just end up being a blubbery mess in 30 seconds or less. So here instead you get your very own blog post, I call it my Madill Team.
Those of you who have been reading know that I am surrounded by a wonderful group of spinal cord injury experts, they are called "Team Yellow". The difference between this team and my Madill team is that here, I am a student. I have not been a student for a very long time. Down in OT, Gary tells me that athletes make terrible patients. And we all know that teachers make for terrible students, so therefore I have two strikes against me. But you also know that there is no way that I am going to let any of that get in the way of my recovery. In fact, I have already won an award - one that I didn't know even existed. It is handed down from person to person on the Spinal Cord Injury floor, given by a person who is homeward bound to a person who is new and is working their ass off in rehab. I guess that's me.
I am always asking for help from my Yellow Team: A hard thing for me to do. For my Madill team I have only one request: talk about me. More specifically talk to students about how I got here. The more I hear stories from my cycling friends, the more I realize how much work we have to do to educate drivers. And what better way to do it then before they start driving? It's not just about cyclists vs. cars. It's driver vs. anything on the road. And the reason for this is that no one is paying attention any more. Everyone thinks they are so good a multitasking that they can do whatever and drive. We can't. And it's up to us - the teachers. We spend more time with these kids than their parents. We don't want what happened to me to happen to anyone else AND we especially don't want one of ours to be the cause.
I love you guys so much and I am completely heart broken to not be with you tomorrow. Imagine, wanting so badly to go back to school? That's me, except the school I am at and the team I am with is not the one of my choice. Thank you so much for all the love and support you have sent me and my family, words can not explain our gratitude.
My goal is to be back in to see you by the end of October, on wheels or otherwise, time will tell. And I will be back on the Madill team some day, have no doubt about that.
PS Tell the kids I miss them too. When I talk about "my kids" here people stop my story to see which kids I mean, my own or my students. It feels so much more natural for me to call my students "my kids" because deep down I love them all too.
Those of you who have been reading know that I am surrounded by a wonderful group of spinal cord injury experts, they are called "Team Yellow". The difference between this team and my Madill team is that here, I am a student. I have not been a student for a very long time. Down in OT, Gary tells me that athletes make terrible patients. And we all know that teachers make for terrible students, so therefore I have two strikes against me. But you also know that there is no way that I am going to let any of that get in the way of my recovery. In fact, I have already won an award - one that I didn't know even existed. It is handed down from person to person on the Spinal Cord Injury floor, given by a person who is homeward bound to a person who is new and is working their ass off in rehab. I guess that's me.
I am always asking for help from my Yellow Team: A hard thing for me to do. For my Madill team I have only one request: talk about me. More specifically talk to students about how I got here. The more I hear stories from my cycling friends, the more I realize how much work we have to do to educate drivers. And what better way to do it then before they start driving? It's not just about cyclists vs. cars. It's driver vs. anything on the road. And the reason for this is that no one is paying attention any more. Everyone thinks they are so good a multitasking that they can do whatever and drive. We can't. And it's up to us - the teachers. We spend more time with these kids than their parents. We don't want what happened to me to happen to anyone else AND we especially don't want one of ours to be the cause.
I love you guys so much and I am completely heart broken to not be with you tomorrow. Imagine, wanting so badly to go back to school? That's me, except the school I am at and the team I am with is not the one of my choice. Thank you so much for all the love and support you have sent me and my family, words can not explain our gratitude.
My goal is to be back in to see you by the end of October, on wheels or otherwise, time will tell. And I will be back on the Madill team some day, have no doubt about that.
PS Tell the kids I miss them too. When I talk about "my kids" here people stop my story to see which kids I mean, my own or my students. It feels so much more natural for me to call my students "my kids" because deep down I love them all too.
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