Pain Fog: Living in spite of Chronic Pain
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Day 29. Sensitivity. 

3/23/2015

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Le Nordik Spa in Chelsea Quebec is a wonderfully relaxing place. It has many saunas and hot tubs, along with cooling stations and relaxation and quiet areas. There are a host of treatments available but my sister and I go for the water therapy. It is a full day of wandering to and from saunas and pools. This time Jerri joined us and it was a fantastic day.

I would be remiss if I didn't mention the difficulty in the accessibility of the place. To be fair, they don't claim to be accessible, there are steps everywhere. Having weighed the pros and cons my sister and I felt the front entrance was probably the biggest challenge. She emailed and asked if there was another entrance explaining that we realized there were stairs inside. Inside the stairs have rails and are not covered with snow and ice. Outside there is a series of flat rocks as stairs, beautiful but dangerous for someone with balance concerns.

We were reassured when we got an email with instructions for a handicap entrance and parking in another area. We arrived and had some difficulty finding this "handicap" entrance, but eventually found it.

There was some effort to park, although there were three spaces, there was a large truck unloading supplies right in that area. To make matters worse there was a car parked in one of the spots, idling, waiting for someone. That someone turned out to be an employee who came running out of the building, and jumped into the car.

Finally parked, we went looking for the entrance we were told about which didn't require outdoor stairs. The only thing we saw was a locked door which read administration. Standing there in the falling snow we decided to knock on that door since we couldn't see anything else. A pleasant young woman opened the door and we explained we were looking for the handicap entrance that we had emailed about. She had no idea what we were talking about. She suggested we take the snow covered two flights of stairs to our right. I asked if we could just walk though the administration entrance. Off she went to find a manager, leaving us standing in the falling snow. We weren't even invited inside to wait. I am using a cane now, so not so invisible with the disability.

Eventually, a manager came back and opened the door, and invited us in. We explained we had emailed ahead and were given an alternative entrance. She allowed us to go through the office hall away and up the indoor stairs.

It was a lovely day from that point on, but it is a hard way to start a day of fun and relaxation. Thankfully, I have learned to let it go once I have been assertive about the need for sensitivity.

I was able to spend an incredible day with my sister and my daughter. What more could I ask for? Sensitivity training for staff would be a good start.
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Day 19. Readjusting. 

3/14/2015

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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!

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Day 4. Life. 

2/27/2015

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Life never stops when you are having a crisis, however if it is normal life it feels as though it does. If you have had a death in your family, you may have looked at strangers going about their day buying groceries, banking, joking and smiling, all the while you are at a dead stop and it feels surreal that life is going on around you.

This "crisis" of mine was piled up top of another family crisis. My 87 year old mother had a very serious fall and has been in hospital for a month. I had travelled across the country to see her and help with the load my family was dealing with throughout her crisis. It was not very good timing for me as I knew my condition was getting worse and the pain was becoming unbearable. Coupled with that was the fact that my mobility was getting questionable, travel was not advisable. But I had to go. My need to see her, to be there and do whatever I could was over ruling the fact that I was having a crisis of my own.

I went to Newfoundland and did have a very good visit with my dear mother. A visit in which I can feel good about. I cared for her, fed her well, we had honest conversations about her situation, and above all we had some very good laughs.

That was one of those cost/benefit situations. I could have easily said I couldn't go and who could blame me? Those who saw me knew what I was going through, but it was important to me. I was driven to go and do what I could. My husband as always is my safety net and as long as I have him by my side I am able to risk. Risk I did, knowing what I know now, about my condition I am glad I went when I did. Who knows when I will be there again.

So, life doesn't stop, and it can feel like piling on at times, but take one step at a time and know what it is you want and go for it. I am sure glad I did.
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    Maureen Clout

    I'm going in for a 4th neurosurgery; this time it's a repair to my lumbar fusion. Here, I will post my daily updates on dealing with diagnosis, surgery and recovery. Join me on my journey.

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