Today is the last Sunday we will spend here. I slept a little later and Barry was later coming but but by two o'clock the day was dragging on. It's foggy and raining here in Toronto and looks more like a June day in Newfoundland, than Toronto. Had the sun been sunning we would have had a different day, maybe we would had gone up to the roof top or out to the park and we definitely would have had a latte at the little cafe down the street.  It's pride  week here so we could have gone somewhere to watch the parade.

Instead were stuck inside.  We had a walk around the building.  There are ten floors here each has a different speciality. This weekend we walked them all. It was great therapy as far as walking was concerned but it is a pretty sad place to be. Many are here for a very long time. It's been 27 days for us and a week at Toronto Western before. We are feeling the fatigue and wariness that comes from limited conversations and being in hospital and all that comes with it.  I am truly grateful for what I have been able to accomplish here, although I am not at the level of readiness I had hoped to be, I am going home.

As I lie here tonight knowing tomorrow is my last full day here, I can't help but feel excited. I don't know how we filled the time but we did. We are a team of four who has done it before and are doing it again. All the old says about whatever doesn't kill you makes you stronger can be an annoyance at a time like this, however I have to say there is a glimmer of truth to them.  I feel mentally stronger right now than I have in a while.  For sure there have been some incredible down times through this process but Roth now on the brink of getting out I know there is a lot ahead of me but I feel strong enough to do it. I have gained a lot from the support I have been given. People have showed up for me right when I needed them. It has been wonderful to allow myself to gain strength from others.  It's been a hard lesson for me.  I love to give but receiving has been difficult. 

This process has allowed me to receive gracefully. I accept help, encouragement and practical things more readily than I ever have in my life. It feels good actually to accept without hesitancy the loving kindness that is not only offered to me but to our family. " A kind gesture can reach a wound that only compassion can heal" Steve Maraboli.

I know I will look at our pet therapy visits a little differently than I had in the past.  I can see now from a patient's point of view, especially the long term patients, what a visitor from the outside can bring in.  It has always been lovely visiting with Whinnie and seeing the joy and delight she can bring but I know it will man so more more to me in the future.

I want to hold on to this feeling of appreciation for as long as I can.  I was looking at pictures that were on my iPad of our house and the surrounding area.  How fortunate we are to have what we have and to be able to enjoy it all as we do.

It's so close now I can feel it. I have already started to let go of this place and this experience. I have written cards to those I have had a good connection with and I will have my final assessment tomorrow. 

I'm leaving with a better feeling of Toronto. I have always enjoyed my time here, but I have seen the lush green side of Toronto this time.  I have also experienced the beautiful neighbourhood of Old Cabbagetown. It is so well cared for and there are so many trees and flowers. We saw many young families walking dogs and taking their kids to the park.  Toronto wouldn't have seemed like a good place to raise a family had I not seen this little snippet of Toronto life.  There are many other areas that are similar; Riverside, Leaside, Rosedale, etc. From my bed I can see the Don Valley which is full of trees and parks and the bridge that connects Bloor and Danforth and the skyline of the downtown. It is an interesting combination of what Toronto has to offer.

"The bridge", as I call it, that connects Bloor and Danforth is actually called The Prince Edward Viaduct.  A viaduct is a series of arched bridges that go over a valley or water.  In this case it does both. The interesting thing about this viaduct is that it has had a transformation as of late.  They have added a light show.  I got a sneak peek of a couple of nights ago as they were trying it out before the big revel on July 4th. This is not any light show; it will change within every minute, every gust of wind and every change of season.  The cost of 2.6 million dollars has had politicians fighting about it since its inception. It is a lot of money to spend on lights, but from my vantage point, it is an amazingly unique addition to this city. Here are some facts about the bridge;

16.5 million Colour possibilities
35,000 LED lights
45,000 feet of cable
2008 The year plans began to illuminate the bridge
3 Large computerized lighting controllers

It has given me pause for the spending of public money.  When you visit a city and see these things they tend to stay with you. Toronto has had the CN Tower lit since 2007.  It has an eight minute light show at the top of every hour.  The colours are chosen by the public and charities for the most part. There are obvious colours such as red and white on July 1st for Canada Day and on the day of the Pride parade, June 28th, the colours of the rainbow will be glowing from the tower.  As frequent visitors to Toronto it has always been of interest to us to see the tower lit up.  I remember vividly bringing Taka, our Japanese son, to Toronto for the first time. We had gotten an amazing deal on a downtown hotel room that faced the CN Tower. Taka had a roll-out cot in the room right next to the window.  He was in awe.  He asked if we could leave the curtains open so he could see the colours of the Tower as he fell asleep.  He told us he woke several times to see it that night .  What has become commonplace to many, I am sure, is a treasured memory for those who see it for the first time in person.  So it brings me to the cost of the Prince Edward Viaduct. It may seem like a lot of money for lights, but it is what defines a city; the modern artistic expressions that leave us with vivid memories.


While I have been here they opened a revitalized Queens Quay (a 1.7 km stretch along the lakeshore right downtown), completed numerous buildings and venues for the upcoming PanAm games (including 6 new buildings for the Athlete's Village which will be re-purposed after the games, creating a new, re-vitalized neighbourhood near downtown), and put some new modern street cars and subway cars into service.  Barry has commented many times as he walks back and forth from the Hospital to Jerri's, that Toronto has become a different place in the last little while.  It actually feels like you are "somewhere", like Toronto has finally grown-up and fits as a  modern, vibrant city in our ultra-modern world. 

I wish I had a picture to show you the Viaduct lights, but it was lit long after I was tucked in for the night and my family had gone home and thankfully, I won't be here for the grand reveal on July 4th.  So it is just a memory in my head for now; that is until I visit Toronto again and drive down the Don Valley at night and see the most unique light show.

Here is an article from the Toronto Star regarding the viaduct lighting

I have to admit one of the things I wondered about most before my surgery was, what it would feel like to have a steel rod and screws in my back. I didn't like the idea of having something foreign in my body. I know it is a very common thing with pacemakers,artificial joints, and and so much more. I have to admit it made me feel a little uneasy. Not enough to not want to have the surgery but I did wonder how it would feel. Well let me tell you. In the last two weeks I have been having feelings of sensation in my lower back. Up until that time I was not feeling much of anything other than pain, though not near as much I had anticipated. Well all the other concerns with AD, the pain was well controlled by a pain management team to help keep the AD under control. 

It was only after transferring to Bridge Point and at my request that we start to lessen the amount of pain killers that my back let me know what was going on there.  It hurt.  I was doing a lot more physical activity; and seeing more people, so I was naturally going to feel more pain.  I didn't want to mask it completely,but I had to be comfortable enough to get through an hour of Physio and all my exercises through the day. I had added leaving the floor every day, then leaving the building daily.  Those outings were exhausting and often painful.  There is a fine balance in pain management and it includes anticipating pain and staying ahead of it. So before  and after Physio I took pain medication and then I judged every other time day by day.  The exception is always through the night. If I went through the night without pain medication I would be in too much pain to go to morning Physio, I am woken at night for pain meds.  I have cut in half the amount I am taking now compared to the first week here. That was totally my own plan nobody discouraged or encouraged me either way.

As far as the success of the surgery time will tell.  I have to say that the minute I woke from surgery the very first thing I noticed before I tried to wiggle my toes was my leg no longer hurt.  My right leg was so incredibly painful when I went into hospital the morning of my surgery that I likeY would have agreed to amputation. It was nerve pain and it had gotten increasingly worse, to the point that I never knew what to expect when I put my foot on the floor. There were times when I would cry out in pain, no matter where I was, or who I was with.  That nerve pain was gone. For that I am truly grateful. My back hurts I have to be very careful with movement and not to do too much. That I think is only fair this close to a major surgery. I cannot judge what kind of pain and movement yet it is too soon; but I feel very hopeful. My right foot has lost some feeling in parts of it. It feels like a solid brick at times and it was very difficult to trust it when I was learning to walk again. If I hadn't experienced the lack of feeling with mobility in the past I doubt I would have been able to walk as quickly as I did.

I am walking with a walker now for the most part and for longer trips I'm in a wheel chair.  I have starting to be able to walk for a short period of time with a cane as long as I have supervision.

There's a feeling of perseverance for sure but allowing yourself to feel vulnerable is also important. I knew from experience it was scary but pushing through the fear would have to happen at some point.

I have done well with Physio, I have a great young female physiotherapist who has a great understanding of balance. She encourages me to go as far as I can, but won't push me past my comfort level. She allows me to do that for myself. Megan is her name and she and I have a great cooperative relationship.

Mayleen is my occupational therapist. She is a little Dynamo. She has a smile every time I see her and we hit it off the minute I met her.  The funny thing is, I never really understood the role of an occupational therapist, even though I had one for two months while at Lyndhurst.    She has restores my faith in the occupation. She has helped me from getting a spinal gel bed the day I realized the bed I was in was causing me problems, to helping me learn to dress without bending and everything in between. We have a great time together and always have lots to talk about.

The third person who is a part of my team that has really impressed me was another young woman. She is an intern working with the physiatrist. Her name is Dr. cavalier. She is a very down to earth doctor who believes in treating the whole person. She, and her mentor, Dr.mcNeil were the only two who knew what Autonomic Desrefleaxia is,and how to treat it. Without them I wouldn't have been able to remain at this facility.  Besides that, Dr. Caliber has a wonderful personality and comes across always, as caring about a good outcome.  I would say she has been the cornerstone to my treatment here.  

I will know more about the outcome of the surgery as time goes on. Right now my focus is and has been walking and walking independently again.  As time goes by we will see the benefits of the fusion.  I see my Neurosurgeon and his team on July 20th. At that time I will have tested to see if the bone as started to fuse. It is early days but they can start as early as six weeks.

I feel confident that when I get through the rehab period I will be far better off than before the surgery. 

Home.  Four letters that mean so much. Tuesday cannot come soon enough. Barry and I want to be in our home managing my care with the confidence that we can do it, in the comfort of our own home.  I miss my bed (though I do love this gel bed), I miss my deck, I miss the lake.  Most of all I miss the control I have over what and when I eat.  The privacy that you give up in a hospital is also something that wears thin over time.  We want to be alone to discuss whatever little thing that is a concern at the moment without everybody else's opinion.

I have loved the fact that I got to see Jerri every single day. Barry and I have been here to hear all about her transition into her job at Sick Kids. I also have been fortunate to have Barry to help with my rehab. It is a full time job, and it takes having family members around to fill in where staff are short. One of the many things family has helped with are my trips outside of the hospital. It would have meant a longer hospital stay and more rehab if I didn't have them to bring me out into the world to push my limits daily.

Meghan and Whinnie arriving on the weekends when there is no Physio or appointments helped make the long hours here on the weekends more fun. 

Friends and family visiting, calling and communicating with me has helped a lot with the initial sense of isolation. 

But being in your own home has a sense of comfort and contentment that nothing compares to.  We will need assistance to get me through these next couple of months but I have faith that the many professionals in North Bay will meet and likely exceed our needs. I'm also grateful to have a sister and husband willing to come and help out for some time. 

I'm excited today because I asked my physiotherapist to measure my legs for comparison. There is a big difference between my right and left leg (due to muscle atrophy from my first surgery). Being laid up has exacerbated that difference. What I know from the past is it takes way longer to build muscles than to lose them. So, that's why I was excited today when my legs were measured again and we saw as much as a centimetre and a half difference in some areas. I felt so motivated. I know I can do this. It is slow and steady but when you have clear data like that it really can give you the encouragement needed to keep plugging away. 

With or without the walker, I have to walk to be able to walk; so, Callander people, get ready to see me doing just that.  It will be great to walk along the Lake Nipissing shore once again.

I'm getting out!!!!  The release date is June 30th. I'm ready to go and I think Barry is too.  He has packed up some of my things already and there are six days to go.  I'm walking with a walker for the most part and have used the cane with supervision.  My physiotherapist wants me to have a walker in place for my return home.  To be honest I had hoped that I wouldn't need it by that point but progress is a little slower than I thought. I can still improve as time goes on and I feel certain I will.

My occupational therapist, Maylene, had me work around the kitchen today.  It was interesting moving around the kitchen finding things and getting items from the fridge to make an omelette. I would say I did it with relative ease, however I was exhausted after I finished cooking it and it did take me almost forty five minutes.  Barry was pleased to have something to eat that I had cooked and so was I.

That brings me to the topic of food and its importance in all of our lives.  Don't get me wrong; I get tired of shopping, preparing vegetables and cooking, however when those things are taken away it leaves you with a bit of a helpless feeling.  It is a luxury to decide what we would like to eat each day instead of having something put in front of you that you either do not like or are not in the mood for. We all have those days when we just want a certain thing.  That's a bit hopeless when you are in a hospital bed.  Usually it wouldn't matter if it is a week or so but I'm into my fifth week now and I'm tiring of the lack of choice, the poorly prepared meals and the lack of healthy vegetables. I've included a few pictures for you to decide for yourselves if you would eat it.  I've tried to be cooperative and eat the hospital food the majority of the time but some days I just can't do it. Even when there is something I like there usually isn't enough of it.  I see a lot of bigger people here and I wonder how they survive. 

I have the good fortune to have a daughter who has taken on the task of  cooking for herself and her Dad this whole time. This past weekend Jerri and Barry spent Sunday morning chopping and cooking for the next ten days.  Every now and then I break down and dip into their stash of healthy, good food.  I have never understood why hospitals and nursing homes are notorious for having bad food.  This one  is especially bad because when there is something I do like, the portion is so small it doesn't ever feel like I've had a meal. I am used to an evening meal with at least two vegetables and sometimes a salad or garlic bread.  One evening I was served a very good curry chicken drumstick with carrots. That was the full meal.

It's going to take me a while to be strong enough to shop for groceries, but when I do, I know I will enjoy choosing fresh produce and healthy cuts of meat, fish and chicken. Preparing foods that are familiar to me and have an abundance of taste and choice will be one of the many benefits of being home.  If you ever hear me complain about shopping and cooking....please remind me of this time in my life!

We've realized that my discharge date of July 3rd is not very practical. It is a Friday and half of Toronto heads North on Fridays. We know from experience this can add two hours to our trip home dealing with traffic. With that in mind we approached my team and asked for an earlier discharge of Thursday July 2nd. We no sooner had that arranged when we all realized that with July 1st being a holiday I would be just putting in time until the 2nd. So now we have requested a release date of June 30th. They said It would depend on how many discharges they already have that day.

Today Barry and I left the hospital again for the afternoon.  We wandered around the Leaside area (Bayview Ave.), in and out of quaint little shops and stopped for coffee when I needed a break.  I'm finding it way more difficult to walk outside then here at the hospital. That is the reason these outside ventures are so important. It is mentally exhausting as well as physically, because you have to be so aware of other people. One little bump or nudge and I would be down right now.  And falling is not an option. Falling after a spinal fusion can cause so much damage. I am not going to fall.  I would not be able to have these outings and stay safe without Barry at my side.  This is the best therapy I am getting, both physical and emotional, and it's helping me move forward at this very important time in my recovery.  Even my therapists have said that there is only so much they can do and that getting out into the world - safely - is a necessary step.

We've reached our breaking point at Bridgepoint; it is time to leave. My patience is wearing very thin and I'm losing my pleasing personality. That's just a nice way of saying I'm becoming very cranky.

It has been 21 days in this rehab hospital. I was told I would have a primary care nurse. I have had 21 different nurses at least.  Each day I have to tell them my story, what I am capable of, what is needed from them, etc. etc.  It's exhausting and takes my focus away from moving forward, having to go through the past over and over again. Most importantly, I have had to educate each and every nurse about Autonomic Desreflexia,  which is complicated and in my opinion, shouldn't have to be explained to nurses who deal with spinal patients.

With continuity comes relationship building, comfort and trust. When it is someone different all the time, mistakes are made, and there isn't a chance to build a relationship.

I have to say any day I have met a student nurse has been a good day. They are eager, caring and compassionate. There are a handful of long term nurses here who have those qualities as well, but I have only gotten one or two shifts with each of them.  When we see each other in the hallways they are interested in my progress and encouraging. That can make all the difference.

I asked the nursing manager after a particularly uneasy mix up in medications if I could be excused of meeting anyone new.  Fortunately my doctor had gone ahead of me and made the same request. So for the week I have left, they will do their best to assign nurses to me who have already heard my history and know what AD is. 

I look forward to the day I see Lake Nipissing again and sleep in my own bed.