It has been a month since I saw my neurosurgeon and was given the news that another spinal surgery was necessary. I wasn't surprised that something serious was wrong, I had been down this path before. I was shocked however by the extent at which they would have to go to fix the problem.

This wasn't a planned surgery so I am being fit into an already full schedule. That is where the unknown comes from. I have to wait until it all works out to know when the surgery will be. It has made it very difficult to plan. It's been hard enough getting used to the idea of another surgery but the unknown has made it worse.

Another unknown is how long the recovery will be. It is said to be three to six months for this type of surgery, however with a pre-existing spinal cord injury it is not easy to judge. The spinal cord loses resiliency we are told, the more times there is surgery on those of us with injury. It doesn't mean it will not recover, it means there is no clear path.

I was told to prepare for rehabilitation in an inpatient centre in Toronto. It is not a definite, and once again there is no way to tell for how long. We are also uncertain about the areas of the body that will be affected. Will it include the legs, back, bowel, bladder? We are unsure.

To add to the mix of uncertainty we are unsure of where our girls will be when this happens. Meghan, having finished her university year, has applied to jobs in her field in Guelph, Toronto and here. Jerri is applying for graduate schools and jobs in Toronto and abroad.

Given some timelines, Barry may be able to work in Toronto while I recover, but without dates, he's at a loss.

What we do know is very little and much is out of our control. It is a lesson in life, we think we control a lot, but in fact very little is in our control.

I'm very happy I have started meditation and mindfulness because it has helped with the lack of control, and impatience I'm feeling.

What I know for sure is I have a great doctor, in a great hospital and if I need rehab it will be in a first class rehab centre. But I still wish I knew more.

It seems I've struck a nerve with yesterday's post. I'm not the only one who feels judged while parking in the handicapped spot. Some of you have some pretty awful stories. I knew there was much to be said on the topic from my point of view, but obviously it has affected many of you as well. One thing I hadn't mentioned was the difficulty to get the carts to the car in these winter months with so much snow in the parking lots. It's tough because we can't carry the bags so we need the cart, and yet the cart can't always make it through the snow. Even when we are able, it can hurt to push it.

While we are on the topic, let's talk about a few other things that are difficult. I have known for quite some time now that a heated therapy pool is excellent for pain and mobility. In fact on a recent trip to Arizona I used it daily to help with pain and it was very effective. I found before my day started I could get into the hot tub for about twenty minutes with my coffee in hand, and I would feel much better when I got out. After the day was over and we had dinner, I usually lead the willing group right back to the hot tub to warm my weary bones and muscles. It's quite a pleasant way to get pain relief. Of course it didn't take the pain away fully but it made it more bearable.

Why then don't I take advantage of the lovely facilities at our local YMCA has? There is a full sized therapy pool with a whirlpool on one side and an exercise portion on the other. It was there 13 years ago when I came home from my first surgery. It was in fact, a written part of my release that I use the pool twice a week. It was recommended that it be a therapy pool with the temperature of not less than 95 degrees.

At first the knowledge that we had this facility available was very impressive. When I set myself up to use it, my doctor, Physiotherapist and I were a little shocked. The "therapy pool" was not set at 95 degrees, because .........wait for it...that was too hot for the babies. Babies in a therapy pool you ask? Yes every day, and every time of day it turns out. I love babies and I love being close to them but this is not the setting.

The facility has four pools. There is a general large pool with a normal temperature. There's a children's pool, which is a little warmer, and then there is a toddler and baby pool, which is warmer again. So why then is it imperative or even allowed that the moms and babies dictate the temperature of a therapy pool? I'm confused about that but that is how it is.

Another concern for me was to be in a pool with several babies in diapers. This can mean a risk of infection for someone who is very susceptible to infection in the first place. It was very difficult to stretch and do the routine required by my Physiotherapist with a host of moms and babies in the pool.

Walking to the showers is always a challenge with the wet slippery floors. Then when I get to the shower, often the handicap shower with a bench to sit on is taken by a family. I understand, believe me, I know showering toddlers after swimming is not easy, but neither is standing without the needed safety handles in a regular shower.

Then there's the case of public stairs. Many times I have been walking down a flight of stairs carefully using the rail and people are stopped talking right in front of me, leaning on the rail or just sitting on the stairs. I get a quick look and they go on with their conversation. Manoeuvring stairs is a tricky business. And those of us who can still do it need the rail, and we need not to be forced to stop half way done. Proprioception is a strange thing. I learned about it the first time I tried to stand when I was paralyzed. So what it means in my terms, is where you are in space. And an incomplete paraplegic doesn't have good proprioception. I would suspect some

of you with MS may not either. Our feeling does not always go right to the floor and attach to our feet. Therefore we need to be in continuous motion, as much as possible while going down the stairs. Try explaining that!!!

"Excuse me, my proprioception is acting up would you please move?" I don't think so.

There are challenges everywhere and challenges most people don't see, but the fact that I can walk, drive and get out on my own most days is enough for me. I will accept these challenges and try to be polite and light hearted as I enlighten those who want to be enlightened, and then just forget about those who don't.

I used to like shopping. I even liked grocery shopping. I always went on a Tuesday morning to get food for the week and then Friday morning early, to top up for the weekend. It was nice because the store was never very busy at those times and it wasn't too difficult to get a parking space. I would start with a list, coffee in hand and take my time.

That has changed a lot for me in the last year because my mobility has become so compromised. I need to park close if there are close parking places available. If not I use the dreaded handicapped parking with my parking pass. Here's where the negativity begins. I often get a look from some stranger who is deciding whether I am disabled enough to use that space. Once, just once I would like to say what is on my mind.

"Old man, you stand there and judge me yet I am half your age and my legs are in worse shape than yours. I have a spinal cord injury, a lung condition, and a knee that needs to be replaced. Just to name a few. And you stand there on your two good legs trying to make me feel worse about myself"!

Of course I don't say that. I smile and walk away and let him or her think whatever they want to. I can't deny it hurts and that’s the reason I don't often use it. So if you are shopping and see a younger person in a handicapped area please don't make assumptions. We may look good, but wait until we come out of the store and make it back to the car, that's a different story. Let the police look after those who offend this law.

That brings me to another point. It's the invisible illness curse. Many people live with a disability you can see. It is impossible to hide a wheel chair or canes etc. When you have an incomplete spinal injury there is no wheelchair, thankfully. Believe it or not that comes with its own set of problems. I cannot stand for any length of time or walk for very long stretches. I have to say that in every situation. It brings the conversation back to my disability when I would rather talk about anything else.

I'm not alone; there are others who have the same problem to deal with. Many who have MS, Fibromyalgia, cancer, etc. can look normally healthy on any given day. It doesn't mean that they don't need extra provisions made for them to be able to attend an event or get through the day.

My theory has always been to stay home if I don't have the energy to at least fix myself up a little. I often try harder if I feel bad the more dressed up and put together I am, probably means I'm in a lot of pain. Then somebody will inevitably say, "You look great". Don't get me wrong, I love to hear that, but as every chronic pain sufferer will tell you there's a "You look great!" and there's a "You look great".

We hear what your saying by the look on your face. We read your sincerity and appreciate it, but we can also read the look that says, you're not sick, in pain, or suffering in any way. Now to some that may sound a little crazy, but to those who have experienced this you know exactly what I mean.

The bottom line is there are people who love and support you and there are people who question whether you really are struggling. If you haven't experienced chronic pain, it is difficult to imagine getting up and dressed and out to an event, if you are having pain. The person judging you may have only experienced pain in an acute situation. When you have acute pain yes, you generally stay home and don't fix yourself up to go out. Chronic pain sufferers know if we have that attitude we won't go anywhere. If you can manage it at all, it is best to do what you can to get out in the world. We know that, they don't.

It is up to you to surround yourself with those who support you and do their best to not focus on the pain, but help you live the life you want to.

Don't let a stranger steal your joy, don't let the judgement of an acquaintance ruin your night.

I would certainly say this is a readjusting period for me. I had a surgery in September that was not easy, but it certainly left me feeling better than I had felt for years. That was for about a month. I was basking in the feeling of having fewer restrictions. I could sit longer, stand longer and walk longer. I wasn't anywhere near going to the gym or living like the average person my age but compared to before the surgery I felt wonderful. I was truly grateful for the break from constant pain.

That changed for me on a beautiful fall evening when I decided to get out of the house with Jerri and Barry and of course Whinnie. We had a goal of a fifteen minute walk. It wasn't long into the walk when I went over on my ankle in a very unusual way. It wasn't a trip, I hadn't stumbled, it just happened. What was even more bizarre was as I was looking down at it I couldn't make it move. My ankle stayed that way for what seemed like an eternity, as much as I tried to fix it, it didn't co-operate. Finally I was able to stand again. Barry and Jerri questioned what had just happened, wondering what I had tripped on. Secretly I knew there was a problem, my swollen sprained ankle was the very least of my concern.

When you have a spinal cord injury the signal sometimes doesn't get to the brain. This can mean a quick mishap, like a fall, or I can't always pee when I need to and various other things. It usually corrects itself fairly quickly.

This was different because it left me with back pain, leg pain, and inflamed nerves. I tried to carry on with the hope I had before this happened.

When I went to Toronto for my surgery follow up, the cat was out of the bag. After a brief examination it was clear that I was dealing with a bigger problem. Nerve conduction testing, MRI, and neurological testing confirmed that there are many different areas of nerve entrapment and two discs that have to be removed and replaced with artificial discs as well as rods and screws. For all you medically inclined here is the link that shows an animation of the procedure. 

This is a big surgery, period. However for someone with a spinal injury it adds risk and the recovery is much longer.

This is not the outcome I wanted, not by a long shot. It is what I have to do if I want to try to experience that elusive feeling of freedom I experienced this fall. It was a short period of time but it left me wanting more. I want to have a little more freedom, a little less pain and most importantly not live under the threat of paralysis. Choosing not to have the surgery would be a wait and see game and I'm a proactive person, so surgery it is!

One of my readers pointed out that she doesn't have physical pain, but does have more than her share of emotional pain. From what I am learning though my own research and the Mindfulness course I am doing, there is a very strong link between both.

Those of us who feel more physical pain (in particular fibromyalgia patients) can usually track back to its onset, and see that we were dealing with a very difficult time emotionally. So what I want to say to those reading who live with chronic emotional turmoil, do your best to deal with it, or else you may be adding chronic physical pain to your emotional distress. In fact there are people in our chronic pain class that are there for emotional pain alone. Meditation does help both. In his book The End of Stress as We Know It, Dr. Bruce S. McEwen, states that prolonged or severe stress can actually weaken the immune system, strain your heart, damage memory cells in your brain, and deposit fat at your waist and buttocks which is a risk factor for heart disease and cancer. Stress also has been implicated in irritable bowel disease, aging, depression heart disease, rheumatoid arthritis, diabetes, just to name a few. So having stress as an inevitable part of your day is not to be taken lightly. You are setting yourself up to become sick.

The sun is shining and that helps with mood especially after the long winter we have had. Although I can't go for a walk, I think it is only a short time away till I can sit on the deck while writing and reading.

I have also recently learned that taking vitamin D can help with chronic pain. It appears as though this vitamin has many benefits. We all know how it affects mood and is said to help prevent cancer - and now pain relief. It is worth looking into. It is effective only when taken in large doses so you need to read the specifics around it before taking it. I have heard from a doctor not to take it if you have sarcoidosis or are prone to kidney stones. So unfortunately that leaves me out.

With spring around the corner I am finding myself feeling the hope of a good summer. I love to garden, fish and be out on the boat taking pictures. That's my goal moving forward, to think about what I want for the future and plan on it.

Another busy day on very little sleep.  I couldn't get to sleep again last night and it has really affected my day. My head feels jumbled and the pain level is higher when I haven't had a good sleep. I'm not sure sometimes which happens first, the pain or the emotional unrest when sleep eludes me.  
One thing I know for sure is lack of sleep affects so many important functions in our lives that it is not to be taken lightly.  It can cause serious depression in those of us with chronic pain.  
I remember the first time I had surgery and rehab, every time I went to see my doctor he asked about my sleep and emotional health.  I questioned him about it and he told me lack of sleep is the quickest way to depression for a chronic pain sufferer. 

Having worked in the mental health field and knowing enough about depression, I heeded his words and did whatever I could to get a good night's sleep.  It seemed to be easier in those days for me.  I did have disrupted sleep because of the pain but I could always fall back to sleep.  Now I am finding it harder to get comfortable enough to fall asleep and if I wake during a painful roll over, I tend to stay awake.

I'm working on it.  I know, as with the clutter we are cleaning up in the house, there is emotional clutter I have to let go of as well.   Not as easy as I would like but I'm working on it.  
I had a difficult time even writing today because my concentration is so affected by the emotional stuff and lack of sleep.  I know how important this is to my overall health and the preparation for surgery so, it has become my number one priority. 

Tonight I have a recipe for good sleep; hot bath, no electronics before bed, dark room, cool bedroom, meditation and let go of what I cannot change. 

I gave myself a deadline.  I could wallow a bit, feel a bit sorry for myself, get all of the negative thoughts out and then I had to move on.  Friday afternoon was my soft deadline and the end of the weekend is the hard deadline.  I chose to do this because if gives me freedom to let it all out but then get on with life afterward.  I have found this to be helpful in the past because I have noticed that if not given a voice the fear, anger, disappointment will raise it's ugly head in some form or another, so I might  as well give it permission.  
Vulnerability is a curious thing.  it is not seen as a positive or even useful emotion in our society.  We are constantly reassured and bolstered up when we are feeling down about anything.  A little soul searching and tears are not the end of the world. I am a honest person, some may say honest to a fault, andI have always felt it important -- yet when it comes to pain, honesty is a funny thing.  When asked "How are you?"  you learn quite quickly who to answer honesty.  Let's face it, no matter how close a friend or family member is nobody, and I mean nobody, wants to talk about somebody's pain all the time.  It is depressing.  I get sick of saying it myself. So I try to be the stoic person who has pain and health issues, but gets on with life anyway. 
 When handed a fresh crisis like this one, I need a little break from being stoic. I need to have a planned break down and let it all hang out, but only for a short time.  It's a slippery slope.  Depression can take hold and you can feel justified in it's existence, so you have to be very careful.  The "poor me's" are unattractive and unproductive so they have to have a lifespan and it has to be short.