Here is a picture of our gang at the Wedding yesterday. You know I spent the night on the dance floor (as much as I could!).
Can't blog -- too busy recovering from yesterdays celebrations. Big events always take it out of you, but when you are also dealing with chronic pain, it takes extra planning and extra recovery.
Here is a picture of our gang at the Wedding yesterday. You know I spent the night on the dance floor (as much as I could!).
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Can't blog -- too busy celebrating the love of a beautiful couple, with my beautiful family!
I'm bored. I have never watched so much T.V. in my life. I have done all the little things around here that I am still capable of doing; and yet there are more hours in the day than I can fill. I have read everything I can get my hands on and spent many hours chatting on the phone.
Tomorrow that changes. I get to go out amongst people again, probably for the last time before my surgery. This is a very special occasion. A wedding. When I first found out I was going to have surgery there were two weddings I would have to miss, this one and one in July. When they changed the date of the surgery it allowed me to attend this one. The Lochheads are a wonderful family. A family we have been very chose to for almost 25 years. Our daughter Meghan was the flower girl in their eldest daughters wedding (Shanna & Brian) and now their second daughter Rachel (& Dan) is getting married tomorrow. It is so wonderful to see a family grow and change over the years and even have families of their own. This feels like a circle of life moment. I am so very happy I'm going to be able to be there to witness it. Tomorrow our daughters with be there with dates of their own. A lot of planning goes into every wedding and I am sure this one in particular will be wonderful. Rachel has an eye for detail and is a meticulous planner and with Shanna as a Matron of honour, they are unstoppable. I had an approach of planning regarding this wedding myself. I knew if I was going to be able to make the drive and the wedding I would have to be in the best shape I could be. This week I did nothing! Since Mother's Day I have been preparing for tomorrow. I have only been out once this week and that was to get a bag of groceries. I've gotten more sleep and rested through the day. I consciously controlled the pain as it came. I think I feel pretty good, considering. There is no trace of the flu left and the pain is better without the usual activity. How I look, well that's another story. I have never been in worse shape in my life. My 87 year old mother has more muscle tone than I do, and I'm white as a ghost! The good news is there probably won't be a weight competition at the wedding and I can wear a lot of make up. It's taken me a lot of time to discover how much preparation makes a difference when you really want to do something. It often means the difference between doing it and not. • We arranged an early check in. I will rest or go to the hot tub before we get ready for the wedding • The day of the wedding, like every day, I will scan each room as I enter to find the most comfortable chair, or place, to situate myself. I do so inconspicuously because my injury is invisible and especially at a time like a wedding, I want it to remain so. • I will allow Barry and the girls to cover for me if I need to walk away from a conversation to find a seat or quiet place. I won't stand at all cost to be polite. • I will look around the room and realize that I am not alone. In any larger gathering of people there are others like me, who have limitations and are making the best of it. • Most importantly, I will not have any negative self talk about me and my injury. I will enjoy what is possible for me at this time and not bemoan what is not. • Acceptance acceptance acceptance • I find joy in other people and their ability to throw their heads back and laugh, find fun in the moment and go for it. Time with family and dear friends who are like family is nourishing to the soul. I will enjoy every minute. Tomorrow is a blessing and one that I so look forward to. I will drink in all the beauty and store up the laughter in my memory to draw upon as needed in the future. "You can argue with the way things are. You will be wrong 100% of the time." Byron Katie I'm not going to pretend to know enough about neuroplasticity to explain it fully here. I have known about the importance of it when talking about pain for quite a number of years. I don't have enough of a scientific mind to do it justice. I can however explain how it has affected my life in a good way. In essence I will tell you in simple terms and give you a few links to read what the science is telling us.
Many years ago when doctors realized I had a spinal cord injury, and the severe pain I was having was caused by it, I was prescribed pain medications. It was a very scary amount and it did little to address the pain. I was also very, very resistant to taking it. Once it was clarified and diagnosed as neurological pain, the medication type and amount was adjusted. I felt some relief. Not gone, but better. I was categorically told I would not have pain relief from my surgery. The purpose of the surgery was to prevent paralysis. I was still hopeful that I would have pain relief until it was explained that once the pathway to pain has been established for as long as I had been experiencing it, it was unlikely to reverse. The pain, being neurological in nature, had actually changed my nervous system to respond in that way. Controlling the pain was my only solution. There were a lot of very smart doctors in that room that day. I was hearing what they were saying, but finding it very hard to accept. After my surgery, not only had the pain not gotten any better, I had the additional pain from surgery and nerve root pain. I can't even describe how it felt. I don't want to remember that right now, being so close to my upcoming surgery. Let's just say I was more than willing to accept their theories about pain, and the drugs that go along with it. I had a job to do. I had to learn to walk again so I could go home and be with my family. Being the stubborn soul that I am, the minute the pain was lessening I started complaining about the amount of drugs I was being given. My neurosurgeon asked the president of the Canadian Pain Management Association, a doctor in Toronto, to see me. He knew he was fighting a losing battle with me but he knew how to fight back. He realized I needed education on this subject, and he wasn't getting through to me. I still had the dream of living pain free without medication. It was quite a process to get me there. I was not walking at all at that point. An ambulance took me from my bed at Lyndhurst Rehab Centre to downtown Toronto. I was wheeled through the corridors of Mount Sini Hospital where I would spend the better part of the day. Looking back on it, I smile now. They were ready for this feisty Newfoundlander. I would love to have heard his conversion with these doctors beforehand. There was a team of them, and Barry and I. I saw them one after another, telling my story and how I got to be where I was up to that point. I never missed an opportunity to tell whoever would listen I hated taking medications. How naive I must have seemed to them. They had my chart, MRI's, the missed opportunities along the way and finally the desperate surgery to try to prevent permanent paralysis. The truth be told, I was in extreme pain while seeing them, the ambulance ride over damn nearly killed me. Those of you who have been unfortunate enough to have a ride in one know it feels a bit like the back of an old pick up truck. Couple that with lying flat on a hard stretcher and it makes for a very uncomfortable ride. There was much consulting going on through the day and the "Top Gun" would come by once in a while to check in. Finally, they all sat down with me and Top Gun did the talking. He made it very clear that I would have to learn to embrace the medications I was taking. He laid it out for me like nobody else had ever done. Allowing my body to consider this much pain to be the norm was creating a pattern of pain in the brain that would become permanent. It was very important to control pain of this magnitude, fast,and keep it at bay at all cost. I did not want this to become my new normal. He explained by living as I had without a proper diagnoses set me up for a life time of chronic pain. Now, he said, we have some work to do, and you must be on board. He did talk about alternatives to medications but said I was far from that at that point. Once we controlled the pain, if they were even going to be able to do that, then and only then could we move on to other methods of controlling pain. He spoke with such certainly, backed by science that he changed my life that day. I went back to Lyndhurst with a new appreciation for the medication I was taking. They did tweak some of the prescriptions, took away some, added some but the main purpose was accomplished. I was a much more educated and therefore a compliant patient. It took a few days to get used to the new medications and side affects. Once that happened, I noticed I was able to do much more in the pool and at my Physio appointments. Everyone was happier with my progress. There was actually a pretty substantial difference in the quality of my life and sleep as well. My stubborn attitude about medication had been holding me back. I knew I had a long road ahead of me so I agreed to make friends with the pills in my hand. Instead of resenting having to take them and spending endless hours fighting it, I agreed it was necessary for that time in my life. I also made a pact with myself that day to be more open minded and respectful to those in the medical profession who obviously knew more about this than I did. That was my first brush with neuroplasticity and today I read about the Canadian author of The Brain That Changes Itself, Norman Doidge. He is proposing that we can change the way the brain perceives pain. It is a complicated process, but it is starting to be researched and soon it we will know more. What can you do?
The mindfulness meditation I do, is based on developing new “habits” which involve neuroplastic changes in the brain. This course which has been taken by over 10,000 Ontarian's now is based on the very premise that we can teach our brains new ways to receive pain. If you live in Ontario and are interested in taking the course or if you would just like to read about it or buy the book, here's the website. The bottom line is chronic pain is complicated and not the same for everyone but there are things we can do to make a better lives for ourselves we need to be open minded to all of it. Not just the parts of it that we think are good for us. You never know until you try. Today was the date,I was originally given as a surgery date. May 13th. I would be nearing the end of it by now, having started at 8am. Instead I am two weeks away from the surgery date. I was disappointed to have to wait two weeks longer, but now that it is here I am okay with it. I am of the belief that things happen as they should. I woke early this morning and it being grocery day I got up and got out of the house early to drop Barry at work.
I have become disengaged with food these days. I find it hard to make meals, and grocery shopping can be absolute torture. Which I am told it is for some people all of the time. If you hate cooking, than that's one thing, but for someone who loves to cook these feelings are new to me. This dread I feel about choosing groceries, getting them home and putting away, is a new experience all together. You see for those of us who love to cook having someone else get the groceries is almost unheard of. I used to love to look at; the cut of meat, the freshness of the fish, the vibrancy of the peppers and the smells of the fruit as I shopped for our family. The choosing of the food was a part of the cooking of the food. That has changed. There's not much joy in that whole process when every step is painful and you feel as through you're on borrowed time before your legs give out. Now I go with somebody, or Barry picks it up on the way home. Not quite the same. I have to stop myself from being critical of some of the choices he makes. He does well, but does make different choices. It all feels so piecemeal when it is done like this as well. I like a plan and a full fridge to choose from. Those days will be back, until then we will make do with how it goes now. I have never much cared for pre-cooked meals in grocery stores. Eating out is an occasional thing for us, so I am responsible for the planning, buying and cooking of all of our meals. It has never felt like a burden to me, I quite enjoyed it, that is, until now. The trouble is for someone who loved home cooked food, canned soup and grilled cheese, doesn't cut it. That was Barry's suggestion for last night. Instead he went to the grocery store and found a nice pork tenderloin which we marinated and barbecued, veggies and rice and it was a fine meal. Cooking takes time, energy and interest. One thing I know for sure about recovering from surgery is, good food helps. I love a good take out once in a while, but there needs to be homemade food as well. Jerri and I were busy preparing and stocking the freezer to help with the after surgery meals. We should be good for a couple of weeks. I have some old standards that we use in a pinch. There's a bottled butter chicken sauce that requires only a couple of cut up boneless chicken breast sautéed then simmered in the sauce. We serve it with basmati rice and cauliflower and broccoli. Another fast favourite of ours is baked potato, vegetables and anything on the barbecue. I alway have spaghetti sauce prepared and frozen in freezer bags, and have lots of pasta on hand. Those days when I feel as though I can't put a meal together we get a salad in a bag and dig out some spaghetti sauce. As for fresh vegetables I buy three or four different varieties and wash and cut them up all at once. They are stored in a freezer bag and ready to go anytime we need them. I can grab a handful of each and put them in the steamer for any meal. I had always made salads, but now find the bags of salads offer such variety for such a good price that I buy them now to make it easy and quick. So far we have gotten by with out too many ordered pizzas and fast food, but I know those days will come and we will enjoy that too. Here's hoping my love and interest in cooking comes back with my ability to do so! Today is Fibromyalgia awareness day so I thought I would write a little about this syndrome. Fibromyalgia is diagnosed generally between the ages of 25 and 60 and woman are 10% more likely to get it than men. In Canada about 2% of the population has been diagnosed with it. What is fibromyalgia? It is s combination of pain and fatigue to put it quite simply. The pain however is widespread and the fatigue can be debilitating. Those with it do not get restorative sleep and feel a brain fog because of it. It is for all intents and purposes a condition that is invisible. Many people who have this condition look just fine. They may come across as not quite as sharp as they used to be, and slower moving along with a sometimes tired look about them. Fibromyalgia is difficult. So difficult in fact that I'm finding it hard to write about it. My sister Mary has it and I can tell you all about it from her point of view. What I'm having difficulty with is telling you about it from mine. I was diagnosed with it about six years ago. I went to my doctors mid winter for a regular check in and I was sore and jumbled is the only way I can describe it. I talked to him about how difficult I was finding it to do the simplest tasks lately. I had been relatively stable with my spinal injury pain to that point. The sarcoidosis had settled, so what was this feeling. He said those of us with serious chronic conditions are predisposed to fibromyalgia. He told me he wasn't surprised and had suspected it in me in the past, then did a pressure point test to confirm I actually had fibromyalgia. According to the studies the theories state that these are the risk factors to developing fibromyalgia. * Possible risk factors for fibromyalgia include: * gender (usually female) * genetic disposition (may be inherited) * menopause (loss of estrogen) * poor physical conditioning * surgery * trauma to the brain or spinal cord (after an injury, accident, illness, or emotional stress) When I looked at these I knew my doctor was correct. I'm female, I was going though menopause. I had had surgery therefore I was in poor physical shape, and I had a spinal cord injury. I didn't know until this year that my sister would also develop fibromyalgia, so I fact I had not one or two of the predispositions, but all of them. So why then would I be so dismissive of the diagnoses from I doctor I truly trusted. I will admit it here. I was not willing to label myself with another invisible illness/injury. I had been given the unexpected diagnoses of a serious lung disease, called sarcoidosis and had a spinal cord injury from an incomplete injury to the cord. I looked like every else, but I was already struggling to keep up with society's expectations of what a "healthy looking" forty something woman should be. I told my husband and that was all. I didn't research it, I didn't talk about it, I put it aside. My sister became ill rather suddenly it seemed to me, but looking back she had had two infections in a row that really made her sick and then wasn't the same afterward. It took many trips to the doctor and many tests to rule out all other things before it was finally decided she had fibromyalgia. It was through her that I became somewhat educated about it. She studied it fully, goes to a support group and we talk frequently. I have been able to impart some of my knowledge about dealing with chronic pain and she in turn has educated my about fibromyalgia. She has enlightened me to some of the symptoms I had put down to other things. I do have symptoms I had just become good at explaining them away. The house bustled with activity this weekend. Jerri arrived on Wednesday and Meghan after work on Friday. We had a great time this weekend. It felt as if it had been a long time since we were all together without the strain of work schedules and exams.
We played games, watched movies and cooked great food. I was so happy to see both girls in the kitchen knowing their way around and preparing some great things for us all to share. Meghan, being a vegetarian, made a wonderful pasta dish and stuffed pepper, and Jerri made a terrific steak dinner. I have a lot to be grateful for. Barry was right there with them helping out and cleaning up. Nothing says love like a home cooked meal. What is frustrating though is the amount of pain I was having this weekend. It interfered with the activity level for me. On Sunday I was grateful for the overcast day as the heat of the sun was not mixing with the remnants of the flu. We spent a few hours outside with a fire in the pit and we all did some much needed puttering in the yard. Fire wood is split and stacked, the gardens are weeded and ready and our hanging baskets are good to go. There is no doubt that all of that - except the firewood - is a Mother's Day labour of love for them. I'm the only gardener in the family. I was unable to do much but being outside with the crew was fantastic. No phones, no T.V and no internet, just outdoor fun. One of my Mothers Day gifts was a wonderful spread of delicacies that Jerri picked up from the St. Lawrence market in Toronto. It was served on a beautiful platter made by Meghan which also was a Mother's Day gift. So thoughtful. So today I did what I know I need to do. Stay home, have a very quiet day and do very little. It's recovery time. Weekends like that nourish more than our bodies, it nourishes my soul and helps me keep it all in perspective. I'm very fortunate to have a good family. The pain may be constant, but so are they. |
Maureen CloutI'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. Archives
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