Pain Fog: Living in spite of Chronic Pain
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Day 49. Tomorrow is Day 50!!

4/12/2015

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Tomorrow marks day fifty of my blog. My intention when I started the blog was it would be daily until the surgery date then weekly thereafter. We thought it would be about thirty daily posts, before I switched to weekly. Since my surgery isn't going to happen in April it has meant I continued. I will see where it goes from here, however I want to tell my readers a little bit about who else is reading.

To my surprise there are people reading from forty six different countries! Forty six! That has really kept me writing. Hello to China, Russia, Egypt, United States, Japan, Italy and to the other forty countries, I appreciate you being a part of my journey, and I sincerely hope you stay along for the ride.

Most of my blog visitors have come to me from those of you who have shared my link on Facebook. So thank you for doing that. You may not be in pain yourself but you never know who around you will benefit from the blog. So I am humbly asking if you would share this link today. Remember not all disabilities are visible so there maybe someone reading you page who could benefit.

We are very close to the one thousand reader mark and we thought it would be fun to try to reach it this week. We currently have 952 readers on a regular basis. She this week, share, share, share and let's see if we can reach one thousand. (Click on the Facebook or Twitter icon below to share).
With the physical limitations I have it is fun to be able to reach out to all of you through writing. Knowing I have all those people curious about what I have to say adds interest and responsibility to my day.
I want to thank those of you who have taken the time to leave comments, either privately or on the blog. Knowing you enjoy what I am writing and can learn from some of my experiences makes it very worthwhile.

Finally a positive attitude is more than just glossing everything over, we know that. Together we will stay positive while being real. I look forward to moving forward with all of you and hopefully some of your friends.
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Day 31. The Unknown.

3/25/2015

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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.
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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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Day 3. Focus.

2/26/2015

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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.  It feels surreal that life is going on around you. This "crisis" of mine, was piled up on top of another family crisis.  My 87 year old mother had a very serious fall and has been in hospital for a month.   I 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 the fact that my mobility was getting questionable, travel was not advisable.  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 and 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. my mother moves into an assisted care home today.


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Day 2. Rehab?

2/25/2015

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I woke this morning with a feeling of death in the air.

I had to think about why I was feeling like this before even opening my eyes. Then it all flooded back. 

The appointment, the four hour car ride home and the many discussions with friends and family. I had a fitful night's sleep; I had to take extra medication to help me ease the pain of the drive home. It did help me sleep better than I would have, given what was on my mind.

I muddled through the day, not doing very much as I was exhausted and still in considerable pain. I did manage to get groceries with my daughter but then had a three hour nap. I have used meditation in the past to help cope with pain and stress, so I meditated three times today. I can't say I was very mindful but I am faking it until I make it now.

I am stuck on the rehab part of this equation. I had spent three months in rehab after a major spinal surgery over ten years ago and I still have nightmares about it. It was by far the hardest time of my life. Who would ever go back to the hardest time of their lives? I had blocked it out and thought it was in the past and here it is again.....in my face.

My family knows how hard this is for me and they are, of course, trying to look at the bright side -- its their job. After all, the surgeon did say it was only a possibility. It is the best spinal rehab center in the country, I would know what to expect. I did it before and I can do it again...

I don't want to go there, and it is clouding my vision so much I am hardly able to think about the surgery.
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Day 1. Again.

2/24/2015

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I sat in the waiting room at Toronto Western Hospital as I had done many times before, distracting myself with my iPad. I had a spinal lumbar decompression surgery four months ago and for the first time in twenty years I was pain free, but it didn't last. I had about four weeks of freedom from pain and the hope I felt was intoxicating.

I was following a strict protocol of recovery and finally was able to go outside for a stroll. It was the most beautiful day and I was totally enjoying being outside and walking by the lake with my daughter, husband and my dog Whinnie.

Suddenly, without any warning I went over on my ankle. It hurt so much! I tried to roll it back but it was as though it was somebody else's foot. It didn't respond. Everything changed that day. The pain started again. And now I'm back at Toronto Western.

I was lead into the doctor's office and met with two Surgical Fellows. They asked a lot of questions, scanned the x-ray, and MRI. Having spent many years dealing with doctors I wasn't shy so I started asking questions. It was clear they felt I would require more surgery and I wasn't surprised.

My doctor came in and once we started talking, it was obvious this situation was far more severe than either the Fellows had suspected or I had even considered. I would not be a small corrective surgery but a full reconstructive surgery. It would require a week in hospital and an extensive recovery.

My heart sank and I tried to keep prospective. I couldn't even look at my husband. I felt him beside me and I knew our disappointment was equaled by my usually stoic neurosurgeon. He apologized that I would have to go through such extensive surgery. I told him I trusted him, and I do.

The final blow came when he told me I should be prepared for the possibility of time in rehab afterward.

Tears filled my eyes and I barely held my composure.

I'm about to embark on my third neurosurgery. God help me.
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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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