Priceless

Today, being Monday, I was back to physio with Bill and Mark. I was working on some core stuff that I was not able to do six or so weeks ago. I can now hold the bar out in front and lift it up and down. I was throwing the four pound medicine ball, sitting on the end of the bed feet on the floor, back and forth to Bill. We tried a version of "Russian twist" - but I have a long way to go before it looks anything close to real! Satisfying to know that many of these activities were not doable in earlier attempts, even throwing a beach ball was difficult at Parkwood.

Here you can see Barry holding me up from behind - the olden days.

I guess it would be a good marker to have record of what I can do now. I will have some pics taken on Wednesday.

The other great thing about today was that I got to Wingham for physio, the post office and the Family Tree all by myself. Theo was out and the kids are away at camp this week, so there was no one to load my chair but me. So I did it, and it only took me five minutes this time! I knew I would be able to do these errands on my own because both these businesses have made themselves completely accessible. No help required.

Oh, and did I mention that my bladder held too? Upon reflection of our day in Owen Sound last week I couldn't help but think about an old fashioned VISA commercial that went something like this: (cue the Morgan Freeman voiceover)

Botox injections (2 vials - the face uses only one) $795.
Watching the Dr inject the botox into my bladder. Free.
Lunch out (where I ended up eating everything because there was egg in Theo's salad dressing) $25.95
New shoes (because I just happened to find a great running shop) $75
Knowing that I now can get to physio and back without peeing my pants? Priceless.

For everything else there's VISA (which is how I paid for the botox).

Money doesn't buy happiness, but it does buy peace of mind.

New Shoes

It's a small world. Today I ran into someone that I have coached  beside for the past six years. She didn't recognize me, which was not surprising because we often have a lot of layers on at those races, especially on our heads. I told her that the other reason why she did not recognize me was because the last time I saw her I wasn't using a wheelchair.

Where I ran into this fellow coach was at a running shop in Owen Sound, and it was the shop owner who knew who I was. She remembered hearing my story back a year ago and remembered specific details, like how I had written a letter to the paper asking drivers to be more careful around cyclists. I hope there are more people out there who still remember and are changing how they drive. I have had lots of friends tell me that they (and their children) have changed how they drive, I hope that my story has had that effect on strangers too.

Theo and I were in Owen Sound for the day where I had my first botox injections. The hospital staff were lovely and very accommodating. They even let me watch which the biology teacher in me loved. After discussing it with the doctor, we decided that I would have the procedure done without the use of an anesthetic. Due to my lack of sensation we felt that the increased recovery time caused by the anesthetic might be a waste of energy. I was glad that I was awake, it made me feel better about what was going on (I can't help but feel better knowing that I can "supervise" what happens) although I was nervous.

Nervous, even though I knew that I couldn't feel the catheters that I use sometimes ten times a day, so why would I feel this one? Because it was huge! I use what is called a 12 or 14 French catheter, this one was a 17 French! The doctor assured me that the female urethra is very stretchy. So reassuring. What was reassuring was how kind the anesthesiologist (spelled correctly on the first try!!!) was. He introduced himself and said to me "I understand you have had a tough year". Even though that statement made me cry, I appreciated that he knew what I had been through and why I had ended up there. He gave me a heated flannel over my chest and shoulders and we chatted as I watched the urologist make more than 20 injections in the wall of my bladder on the big screen. Dr said I would hopefully know that the botox was working by the weekend.

Did I mention that the botox cost $795.00? Even the doctors and nurses were shocked at that! Here's hoping that Sun Life is going to cover it. What Sun Life won't cover are my new shoes. I have been wearing those black runners with pink laces for a whole year now, and if you know me you are saying "what! only one pair of running shoes??" I just happened into this Runner's Den (Theo was going to the music store) and I just happened to find a lightweight pair of runners that were on sale. So I bought them. Just because.

My full time job

Teachers always tell their students that if they have a question there will be others with the same question. Maybe that applies here? In fact, I am sure it does because as September looms and the back to school ads are taunting the poor children, people are asking:

"Are YOU going back to school?"

I am NOT going back to school in September, at least not in any official capacity. I may volunteer every once-in-awhile, or speak to particular classes or groups. I may help coach. But I will not be found in room 239. There are lots of reasons why I won't be back this year, or maybe even the year after that.

Reason #1.
I still pee my pants. "Um, hello office? Excuse me, but could you please send someone to cover my class so I can go and change my pants?" Awkward. Neurogenic bladder is the name given to the lack of bladder control from spinal cord injuries (as well as other neurological conditions). Although there are drugs to treat these issues, none of them have really worked for me.

I met with a urologist in July and he says I am "the perfect candidate" for having botox injections in my bladder. Botox is not just for wrinkles anymore! I have many Parkwood friends who have had Botox injections and they claim that they were life changing. Botox is a neurotoxin that comes from the bacteria Clostridium botulinum. It is the same bacteria that causes botulism! When injected in the proper doses it paralyses muscles. So the hope is that the botox will prevent my bladder from spasming when it has more than 250 ml of urine in it. Here's hopin.........................................g (sorry, cat) it works and that I can wear the same pair of pants all day long!

Other reasons.
I am still recovering - as I am still seeing improvements in my core muscle function as well as a tiny bit more sensation. Last week in physio I was able to pull myself up onto all fours on the physio bed. That is, on my hands and knees, with no help!

I started doing my own version of breaststroke in the pool last week, and yesterday I walked 2 km on the Lokomat. So long as I am still seeing gains, I have to keep making physio my full time job.

The plans for building the house got stalled last month which means we won't be starting until the spring. We are okay with that. It means we won't end up stuck with a house partly built and not yet closed in. We are building slab-on-grade which means that the cement has to be kept warm, which means we need to have a roof before winter. We were cutting the timelines too close and feeling presser to make decisions we didn't feel ready to make. So we wait. Part of me thinks that building a house is just a dream and I will have to keep working in my full-of-swear-words kitchen for the rest of my life. Please no.

Anniversary of being alive

We have just returned home from a week away. A week that just happened to coincide with the anniversary of my collision. It's not really something to celebrate, is it? Of course not, but it just so happened that there was no lacrosse, soccer, or camp and the cottage we wanted was available. Besides, I think it was good to be away. Thank you to those who sent me messages this week. Although many of them made me cry, I was warmed by the feeling of being loved.

This is how I got around. There were five little cottages in all, one kitchen and four bunkies. All on one island in Georgian Bay. Four of those cottages were connected by boardwalk which you would think would make them all accessible - they were - but not all independently accessible. Imagine Canadian Shield - it's not exactly flat. So we spent our days at the bottom of the hill, closer to the water unless we wanted to spend some time closer to the sky.

We spent the anniversary of my being alive together as a family. We paddled around our rented 15 acres, read books, drank coffee, swam, played cards, ate chips and got way too much sun.

Below you will find three more posts that are more reflections about our time away. These posts were written off-line or by hand (with pen and paper) and I have up-loaded them with pictures now for the full effect. Although, you would have been able to read my handwriting, my spelling is quite atrocious.

Deck Shower

Yesterday I tried out the "cottage gift" that Theo bought for me. A battery powered shower! Theo and the kids can scrub down in the lake – I don’t get in the water as easily as jumping off the dock - so I get to have a shower.

The grey seat you see in the photo is my travel commode. It packs up into a Samsonite suitcase with wheels - pretty convenient, but darn heavy. It is not as sturdy as the commode I use at home, but it works. Well, most of the time (if you set the legs at the correct height - right Mom?) The first time I used it at the cottage I tipped forward and landed on the floor. Theo was down in the kitchen cabin at the bottom of the hill so I sent him a text “I need your help. I’m on the floor. Don’t panic.”  I didn’t hurt myself, but I learned a lesson about balance on uneven cottage floors…

We wanted to find the best spot out of the wind and in the sun. The photo shows what they call the “sky deck” and with the red chairs you can see it for miles across the bay. I thought that tucked away in the corner was good, and it was close to our cabin at the top of the hill where I could be rolled back to get dried and dressed in bed. So Theo brought me all the equipment up to the top – bucket, battery and hoses. Then he carried up a large pot of hot water and went down to the lake to get a bucket of cold. He mixed what he said was a good temperature “showers don’t need to be hot, right?” He connected the leads for the pump to the battery and voila – I have more water pressure coming out of this shower head then I do at home!

It was lovely, until, as I am washing my hair along comes an old guy in a boat, just cruisin’.  It’s one of those situations – I know that if I can see him, he can see me and Theo is doing a terrible job being a curtain. So there I am, in the nude, on my commode having a shower. So much for being in a quiet corner of the bay! It didn’t deter me though; it felt wonderful to get clean.

I learned something else from this experience – it is possible to shower using only one bucket and one pot full of hot water. Talk about conservation!

Wetsuit for sale

I remember the advice a friend gave me a while back; that during the first year (post collision) there would be a lot of firsts and many of them would be hard to get through. I came to this holiday with that in mind.

One of those firsts that I had been thinking about for a while was the challenge of getting into my wetsuit. I bought it at the beginning of the 2014 tri season – I got one full season of racing in it. Anyway we brought it along knowing that the bay would be cold and due to my inability to regulate body temperature we thought it would help me last longer in the water.

Getting it on was hard. It was tough pre-collision, and that was when I had muscles in my legs and core that worked to squirm into it. Theo had to basically get me in as far as I would go and then pick me up by the wetsuit and shake me into it. Kind of like stuffing a sleeping bag into a stuff sack. It wasn’t pretty.

Once we got me into it I got hot, fast, and we knew I needed to get to the water before overheating. Upon arrival our host showed us how to use the water chair. It was something they had made in order for his brother (who has MS) to get into and out of the water. The challenge for me was getting onto the chair because it was quite a bit higher than mine. Taking a chance, we used the slider board to get me on but decided not to do that again – the distance being too far. Theo and Ella have done a lot of lifting this holiday. For quite some time we have ribbed Ella for not having many muscles…my tune has changed now. I have been encouraging her when she uses them – especially now that she is my leg lifter.

Getting into the bay was nice – as I was quite hot already – but l forgot how floaty a wetsuit makes a swimmer. It was actually quite awkward as I was used to my legs dragging through the water far below the surface, and here they were floating right on top! It set my balance off and I actually had to work hard at getting into a vertical position in the water. I never in a million years thought I would gladly accept the help of my 13 year old future lifeguard. Several times Ella helped me flip so that my head was up. It never was a dangerous situation, just a bit awkward.

We swam across to the next island, about 150 meters. That felt like an accomplishment – but getting out of the wetsuit was even more!

For the rest of the week I swam without the wetsuit and stayed in for shorter periods of time. I am going to have to do some reaserch about wetsuits that have zippers up the legs. I know I have seen one before, but I am sure it will

#outofmychair

I started using #outofmychair this week. I have only just started using instagram and I get to twitter occasionally, but it just struck me that I should do this. I am not trying to boast about what I am doing, but I want people to see the kinds of things you can do with some help and a little bit of returned strength. I would not have been able to do the things I did out of my chair this past week without the help of Theo, Ella and Jane. Well, I suppose I would have been able to get out (no help needed to get onto the floor) but for sure not safely, or back into my chair. Someday I will be able to do this, I have been working on it, but I'm not there yet.

"Uses a wheelchair" - not "in a chair" or, heaven forbid, "confined to a wheelchair". These last two phrases have got to leave the language that is used when talking about people with disabilities. Someone I heard speak recently put it this way - "your body is just a way to move your brain from place to place". While I do believe this is true, I also think the body has a lot to say for itself. I used to like to push my body to do things, things that weren't always easy. Early morning boot camp at the complex comes to mind...

Being in my wheelchair is not a horrible thing, but it gets tiring and I like to make a change. Slowly I am learning the best ways to make that happen (aside from being in bed - which is easy to do). Because my chair is my legs, my means of getting around, when I do get out I need another mode of transport or I just sit. Which sometimes is just fine, too.

Ella is driving the boat...some were wondering!

It was a goal of mine, to lay on the rocks again. So we found the perfect spot. 

Yes, those are my feet, and I am paddling this kayak! It took some adjusting, but the third time out it was actually comfortable!

We paddled to a beautiful part of the island. Natural pink stone with black lines running through it. And yes, Theo brought pillows for me. 

No explanation needed. #outofmychair