The girls rushed to the hotel before us and set up an array of appetizers, flowers and cards. We felt pretty special walking into that. It was a very nice evening catching up on everybody's news.
The next day started with the float tank, followed by a much needed nap. Then we were joined by Meghan's boyfriend Travis and we went out of dinner. It was such a lovely evening. Good food, good company and lots of laughs.
On Sunday the plan was for Jerri to run into Toronto to complete her volunteer commitment and Meg Barry and I were to explore the lovely downtown Guelph with all its unique stores. We headed out and made it to a cafe for brunch when I started to feel ill. I was trying to decide if I was just tired or really was sick. I knew I was actually sick when the food arrived. I excused myself while they are and went outside to get some fresh air. Needless to say, I spent the day in bed, sleeping and feeling a little out of it. Barry and Meg went out to a hot yoga class while I recouped.
I woke feeling much better and wondering if it wasn't a part of the detox process from the float tank. Considering my last year, I'm not surprised I had some after effects.
We were together to watch the Grey Cup this evening and that in itself was a gift to Barry.
All in all it was a great weekend despite missing our downtown experience.
Thanks to the girls for making this happen.

Yesterday we celebrated my 54th birthday. Barry cooked with help of some close friends. It was a quiet celebration, but it was a celebration. In our family we believe in celebrating the gift of life. When I hear people dismiss birthdays as just another day I feel sad. If you can't celebrate the gift of life, what in it is worth celebrating? On the day of my birthday I think of my mother and all those years ago giving birth to her ninth child, then bringing me home to add me to the bunch! I also think of my daughters and the day they were born and what a miracle life itself is.
I enjoy being surrounded by family and friends and have a fun day.
I had a special gift this year. My friend Teri took an afternoon off, cooked lunch fur us and spent the afternoon with me. Her gift was the gift of herself. She wrapped Christmas gifts for me and helped me start to decorate the house for Christmas. It made all the difference. The house looks beautiful and I got to catch up with a friend. What a thoughtful thing to do.
My day started with my weight watcher's weigh in and I'm pleased to say after two weeks of nothing the scale moved today. I have lost a total of 7 1/2 pounds now. That's not bad for six weeks of effort. I'm feeling better in my clothes and eating well most of the time and that is what matters. It makes such a difference to have the community of sisters all around Canada, doing this with me and my soul sister Mary, right here in town. We have lost over forty pounds between us!
This weekend we are going to Guelph to enjoy a family weekend together. Jerri will come from Toronto and join us. It's a way to help the girls be a part of our November birthdays without disrupting Meg's studies too much.
I'm really looking forward to our family weekend, there's nothing quite like four of us together.

Life should not only be lived, it should be celebrated - Osho

Although I have lived for about fifteen years with chronic pain, last year I felt I had reached a renewed high, in pain levels. I found I had used all of my usual "go to" things and still wasn't able to get it under control. What I didn't know at that time was nothing I could have done would have helped with the pain physically, it needed surgery to do that.
I had heard about a meditation group for people in chronic pain from my dear friend Margie. I had always been a fan of meditation, and always willing to try ANYTHING to help with pain control, so I decided to look into it.
It turned out that there was in fact a terrific program for people in chronic pain, and it was covered by the Ontario health plan, which was even better. I put my name on the list and eventually I was called to attend.
As I have written about previously in this blog, it is called The Mindfulness Solution to Chronic Pain. I don't know if solution is the right word, but it is a great way to help deal with pain. It was a thirteen week course that not only gave me another way to deal with pain, but introduced me to some great people.
There are a solid five of us who meet sporadically for tea and keep in touch regularly. That was the biggest gain from the thirteen week course. Until then I didn't really have anyone who was my age and dealing with pain as I had been, with one exception. Now I have a small group of people around my age with various conditions that prevent them from living daily lives as they would want. Before this group of people I identified more with the elderly than anyone else. It's not that I thought I was the only one, I knew I wasn't, but It took this group to have the daily support I needed.
I do have a sister with fibromyalgia and a close friend with chronic pain. I had been dealing with my condition for years before they came upon theirs. They were happily working and living their lives as most of my friends and family were. So for all intents and purposes I was alone.
I tried to assimilate, changed career path, and even took part time jobs for the sake of getting out, but for me it wasn't meant to be. The more I did outside the house, the less I could do at home. More importantly, the less I was myself at home. I chose to be here as my best self at home so that I could do what I could for my family.
It was a deliberate decision I made with my family doctor one day. He really wanted me to stop working, I loved my job. I also loved being a mom to my two daughters. After much discussion he asked which is more important. No question, not for any mom, my daughters. He explained how chronic neurological pain affects the nervous system and drains energy faster than any other pain. He said I could continue to work part time but would need to rest the remainder of the day. I had experienced the very thing he was saying. It didn't leave time for honest energy for the girls. I walked out of that office that day with a steadfast decision. I knew what I had to do, doing it however was much harder. I had loved my job.
I didn't look back, not for a long time, but I didn't look forward either. I don't have children home to care for any longer, and the part time job I loved is long gone. In fact all those years of being home while friends worked is coming to an end. They are retiring, talking about it or some are now off on long term disability, so I'm no longer the only one.
Thankfully I have been able to help with some of the adjusting to that change for them. It really is a different world from this prospective.
Back to my chronic pain friends. We have met for support and companionship over the last year. I have had two neurosurgeries, another has had an MS flare, and yet another has had two heart attacks. The other two are dealing with the constant issues of chronic pain. So when we meet you would think we would be an obviously disabled group of people who sit around and complain. That's not the case. If you were to walk into the coffee shop, you would see a group of well put together women, who are laughing and talking. I looked around the table yesterday and saw what others see, just an average group of woman having a chat. It proves you cannot prejudge anyone. There are so many of us walking around, living our lives with so
very much inside that others don't know we are dealing with. Kindness is more important than ever in this world of misunderstanding and chaos.
We are as many are, dealing with what life handed us in the best ways we know how. We learn from each other, we draw strength from each other and we gain the kind of acceptance from each other that is not often given by others.
We have called ourselves P.I.T.A, it's a little play on words. We were calling ourselves the pain group when one day I said we are more like the pain in the a** group! My clever friend coined us the PITAs. We are there for each other; although we don't see each other often when we do it is great, and even knowing we are connected has made this crazy ride of chronic pain more bearable.

Three days ago it was 20 degrees. Today there is snow on the ground and it looks like it is here to stay. Although it has been one of the nicest Novembers on record, as in 24 degrees on the November 4th, I'm still not ready for the snow. It's not that I don't like winter. I love the change in seasons and don't mind snow. It's just that is stays to friggin long in this part of the world.
It is of course a real danger for those of us mending bones and rehabbing bodies. I have to rethink everything I do. And I can no longer walk outside easily. It means boots, heavy coats, mitts and hats. None of it matters except the change in footwear. Every little change in how I walk changes the outcome of how I will feel afterward. There is a lot of trail and error. I had the footwear for Fall perfected, now I will start the search for winter. I have more footwear than most but none of them cute or sexy. Just sensible and sturdy. I used to love nice shoes, now I live through the girls shoe selections.

My physiotherapist gave me a suggestion today. He said with the beginning of winter they also have a great public service announcement to remind people to be careful of slipping and falling. They recommend that you walk like a penguin. Let's face it, they walk on ice all the time. So what walking like a penguin entails is lending you upper body forward, and shuffling your feet along in short little steps. I'm going to give it a try.
​
I'm particularly reminded this year of being careful because a fall this early in recovery could be disastrous. My sister Val, was going to work the other night and it was just after seven in the evening. The sun had set and it had gotten colder. Just as she walked out her front door she slipped and fell on her steps. Her husband Charlie heard the bang and went to find her on the ground and when he went to help her he also slipped and fell. Charlie is okay, but Val wasn't so lucky. She is in hospital with a shattered elbow awaiting surgery.

It's important to keep active but it is also important to be mindful when walking in the ice and snow.

There is good news: If you find yourself slipping, remember “tuck and roll."


If you feel yourself losing balance, tuck into a ball, make yourself as small as possible and keep your head and face away from the fall, experts say. Don't put out your hands to catch yourself, or you'll risk breaking your arms or wrists. Try to land on the fleshy part of your body rather than your knees or spine.


Walk like a penguin. The waddle keeps your center of gravity over your front leg and will help keep you upright. Spread your feet out slightly, to increase your center of gravity, and take small steps.


Also, keep your hands out of your pockets while walking — that decreases your center of gravity and balance, according to the Centers for Disease Control and Prevention. You need your arms for balance.


So, Happy winter everyone, remember the best defence against falling is being in the best shape you can be in and being mindful while walking in snow and ice.

I'm a member of a couple of chronic pain groups and I'm seeing a very common thread. The most frequent complaint those who are in these groups have is, their families, friends and coworkers do not understand.
My response to that is, of course they don't understand. You have to live this to really get it. That is also true of emotional pain, mental health issues or a tragic life event. We never can truly put ourselves in the shoes of another. And even if we could, it still wouldn't be the same. We are all built differently, with a different set of life's circumstances to help or hinder in the dealing of it.
The argument of the alcoholic comes to mind; I drink because my father drank, says one son. The other son says, I don't drink because my father drank. Whose right about the father's influence? They both are of course, because they are individuals, and individual people respond differently to the same set of circumstances.
The same disease, condition or life event will have similarities to others who are dealing with it, but it can never be the same. We have all been raised differently to deal with adversity, and that in itself will affect the way each of us responds.
My physiotherapist was talking to me about my resilience yesterday. She complimented me on how I have the ability to keep going, to never give up. I have to say it's not the first time I have heard that. I don't give up. I have never really given up, but there have been times when I have wanted to, when I had had enough, my fight felt like it was gone. I think that scared my family more than any other thing. It seemed to be more concerning for them then the many hours I was hooked up to many machines in the I.C.U, when I couldn't walk and the many other things they have dealt with They were lost, they didn't know that person, and found it hard to help me.
My point is, you have to help yourself. You must be on your own side for others to be on your side too. That means trying things you don't want to try, doing things you don't feel like doing, and getting up and being up when you don't want to be up. Physio,exercise,chiropractor,acupuncture,osteopathy,naturopath,pain clinic,medications,meditations,massage,supplements athletic therapy,aqua therapy,laser treatments, ultrasound treatment, ice, heat, over the counter rubs and medications, and so much more. Those are the things I have tried and continue to be open to.
I have seen, a MD, Internist,endocrinologist,gynaecologist,orthopaedic surgeons, Physiatrists(rehab doctor), Respirologist, ear, nose and throat
doctor,Urologist,neurologist,neurosurgeon, cardiologist and those are the ones I remember. Our system in Canada is such that you cannot just call a specialist and go see them. It must be warranted, and usually suggested by, then referred by your family doctor.
Most of these doctors have or still do deal in one way or another my spinal cord injury. Those that don't are because of the sarcoidosis and spinal stenosis.
This is all very time consuming and usually involves travel and out of pocket expenses. The thing is, I have always felt that I had to give it my all. In some cases they have not helped much, but in others their particular expertise has been the exact thing I have needed.
I am an involved and informed patient, I listen, ask prepared questions, then decide with the doctor if a drug, treatment or new test is what's needed. Being a passive patient, leaves you feeling your life is in somebody else's hands. It already feels out of control because of pain or injury, so that's my way of being in partnership with my physicians. I have gained a lot of respect from them by doing so.
My family and friends know that I have done, and tried everything to help myself. It makes it easier for them to then help me.
My point is, if you're sitting waiting for somebody else to save you, it ain't going to happen. Save yourself, be your best self in every situation, not just when you feel good. If you do for yourself, others are more willing to do for you what is needed.
There are times in every person's life when they need others to just pick them up and do what is needed and that's okay; however if that is your everyday expectation you will be left behind.
Others become as overwhelmed as you are. They do not know what to do or how to help you. Caregiving is a draining existence if there isn't a reprieve. We need to give that reprieve even if we don't feel strong enough to do so. Be kind and respectful and most of all appreciate those who care for you.
I just watched a little clip that I think says it all, here it is.

Our greatest glory is not in never failing, but in rising up every time we fail. -Ralph Waldo Emerson.

The gold standard when it comes to testing for Osteroperosis is a noninvasive test called bone mineral density test. I had one of those in September, there was some concern about getting a proper reading because I had rods and screws in my back. The tech however seemed to think she was able to get an accurate reading despite the hardware. My results were sent onto Dr. Lau in Toronto. I just want to add that for those of us with compressed vertebrae a false reading is usually the case because the amount of bone in the area becomes larger than usual.
When the test results were back I saw my MD who wasn't surprised that I had a high reading. Bottom line he thought it was an inaccurate reading. My scores were better than a 21 year old woman. His explained that sometimes the scores are artificially high because of compression of the discs and vertebrae. We wondered if that or the hardware was skewing the scores.
Today we got some answers. Some, more to come later. He agreed the back scores could be dismissed as skewed. The hip had a proper reading however that showed arthritis but also showed a high score. So that one can't be explained away.
So what I learned today is that while the bone mineral density is a gold standard seeing the bone first hand as Dr. Fehlings did is the ultimate reading. I do have Osteroperosis in that area of my back, it was seen and touched and felt like sponge. It is possible however that is the only area of my body affected. There are other tests that can see if the body is making new bone as the old bone dies. They can also measure whether you are losing bone at a faster rate than you are replacing it. All of this is done through blood work. It is only available in select hospitals throughout the province and Toronto General is one of them. So off I went to have twelve vials of blood taken. I won't see him again until March and in the meantime I am to do weight bearing exercises.
The complication of sarcoidosis makes it dangerous for me to take vitamin D or calcium without the results of this blood work. It is possible I have an abundance of calcium and vitamin D and growing bone where I shouldn't be. This can cause such things as spinal stenosis. Hmmmmm. Is this where it came from in the beginning I wondered. Well, time will tell.
All of this is rather complicated because of my medical history, but for those of you without my history, please follow steps for bone health. It is a very important part to growing older with grace and movement.
As my friend Mary, a yoga instructor, reminded me. There are many fun ways to increase bone density such as doing yoga. Here is another brief but informative article about other ways to build it.

Today started in Barrie with a lovely breakfast with Margie and David. They are such a wonderful part of our lives. They feel like family and it feels like being home in their company.
With an early start we left to join the traffic headed for the city.
My appointment wasn't until 1pm but we were on a mission. I had one of my photos prepared as a gift for Dr.Fehlings. My hope was to go to Toronto Western and the Neurosurgery clinic to see if I could get a minute to present him with it.
I had wanted to find a way to express my appreciation to him and at the same time show him why my need to go home was so strong. The photograph is of a sunset across the street from my home on Callander Bay. As you can see from the photo the sail boat has furled sails. I think it shows the beauty of the boat in the sun although we traditionally consider a sail boat beautiful when the sails full mast.
It reminds me of how I am now, and how I have been this year. I am not my full self; yet, I'm still here, and with the glow of the sun, I will be my full self again. The photo shows all of us we don't have to be our perfect selves for others to think we are beautiful.
Thankfully Estelle, his receptionist, has gotten to know me and readily agreed to interrupt his very busy clinic day to ask for a minute for me. He came around the corner and was shocked that we had taken the time to come there with a token of appreciation for him. He hugged me and thanked me for always being so kind to him. That is humility, after all he has done for me. He looked at the photo and put his hand on his chest and said it touched his heart. Another hug. He said it truly made his day. All the while I was thinking about how worthwhile it is to say thank you to people important in your life. Another hug and he had to run. Not only did it make his day it made mine.

Here's the photo.