Any way you look at it -30C doesn’t feel good and it sure doesn’t make the pain any easier to handle. This morning we woke up to -40C with the wind chill! This time of year is always hard for anyone dealing with chronic pain. With decreased blood flow to my affected limbs it takes no time at all for the pain to increase with the cold. When temperatures get this way in my part of the country staying inside is the best thing for me! Last week I promised myself that I’d do a better job at getting my blogging back on track. I have to admit that it hasn’t been very easy as of late because of me feeling so run down and having to deal with the increase in symptoms.In my last post I had mentioned that I didn’t have any figures for the number of people affected here in Canada. I did a little more digging and here are a few things I found out. Here in Canada 1 in 5 Canadians deals with some form of chronic pain. As I did a little more reading this week I also discovered a few more interesting facts that I just had to mention. Pain research is grossly underfunded here in Canada with less than 1% of total funding from Canadian Institutes of Health Research, and only .25% of that total funding going towards pain related research. Another interesting fact is that veterinarians get 5 times more training in pain management than regular human doctors.
Something is very wrong with this picture. With so many people suffering from chronic pain don’t you think that the training would take priority in humans over animals, or that funding in our health care system would increase. Reading all of this made me angry and I just had to vent. It’s no wonder that patients dealing with chronic pain have to see about five doctors on average before they find one that has some training on pain. I wasn’t planning on writing about this today but thought I’d better while my last post was fresh in people’s minds. When I did a little more digging I turned up the facts that more than 50% of people waiting for care at Canadian Pain Clinics are suffering from severe levels of depression, 34.6% have thought about suicide, and 72.9% have said pain stands in the way of regular work. Government and the Ministry of Health need to take notice of this!
The statistics I mention above might be for Canada but you can guarantee that what is happening in one country is happening in another. Yes awareness seems to be on the rise but what good is the awareness if the research, training, and funding don’t come along with? Do we get any closer to a cure? How many people have to commit suicide? Facts and figures like these are what full the fire within and keep me pushing to make a difference. It amazes me that with stats like these nothing is being done to make changes to our health system to help all those living with chronic pain.
Pain is the most common reason people visit (78%) their doctors or the emergency rooms. You would think with facts like these that again pain would be looked at a little more seriously but again it doesn’t. Sorry about the rant in today’s post but when I see facts like this I get passionate about trying to make any type of difference that I can. It isn’t just the responsibility of our governments or medical system however. Those of us suffering from pain need to stand up and be a voice that gets heard! If the numbers are correct then there are a lot of us out there that can bring about change to the things that need changing!
It’s been a pretty great week in my neck of the woods! All last week our fine city hosted Grey Cup 2013 with the big game being played last night! I can now say that our city is truly alive with celebration because the Riders brought home the cup last night, making history in the process by winning in front of the home crowd! Car horns and cheering could be heard well into the wee hours of the morning as fans celebrated the victory. This city and province are so proud of them and congratulate them on such a great season!
The month of November is CRPS awareness month and so I always put up a post that brings attention to this. I’d normally put something up at the beginning of the month but for whatever reason I didn’t and so your getting it now. Ok so I forgot about it!
Since being diagnosed I have always been passionate about creating awareness when it comes to this illness. A common question that people ask me is how many people have CRPS? That’s not an easy question to answer because in some places studies haven’t been done to determine the numbers. In Holland a study was done based on 800,000 patients determining that 1 in 4000 were diagnosed with this illness. In England a study shows that 1 in 2000 live with CRPS. I was unable to find any numbers for Canada and the U.S. but was able to find that in the U.S. 50% of all cases go undiagnosed. When I last checked on any studies being done in Canada there was one being conducted in 2012 to try and pull together the number of people living with CRPS.
If you read my blog on a regular basis then some of this information I’ll be posting will be old news. My goal however with today’s post is to educate those of you out there that have little or no background with what CRPS is. CRPS is a multi-system syndrome with diverse symptoms characterized by chronic pain. It affects the immune system, central nervous system (brain and spinal cord), and the vascular system ( hot/cold). It is more commonly found in women( between the ages of 40 and 60) more so than men. As well children and teenagers are also found to be affected.
The pain that one feels with CRPS is a burning, stabbing, and shooting type of pain. It is considered to be one if not the most painful long term condition there is. On the McGill Pain Index it scores a 42 out of a possible 50, above both childbirth and amputation.
The chart above gives you a visual of the type of pain that someone living with CRPS has to deal with. With pain as intense as this it is key that it be diagnosed as quickly as possible. Often however the pain goes misdiagnosed, diagnosed too late, or the patient is told that everything is all in their head. Although we don’t have an accurate number of how many people live with CRPS between 80 and 120 million people live with some form of chronic pain. CRPS is a very real illness that causes suffering that you can’t begin to understand unless your living it! So the next time you come across someone living with chronic pain please don’t tell them it’s all in their head. Chances are pretty good that it isn’t and that the pain is very real.
Over the last couple of weeks things have been crazy busy! Doctors appointments and kids sports and just life in general has left little time for my wife and I just to spend time alone. So this week I planned a date night and took my beautiful wife out for dinner and even managed to get rid of the kids for a night! Only one thing stood in the way of the great plans we had. She came down with a cold during the day! We had a great dinner but by the time we got home she wasn’t feeling so hot and just needed to get some sleep. I can hardly wait for Hawaii when we get many days and hours alone together!
The last week or two have been a challenge for me to get through from a pain standpoint as well as mentally. I went to visit the staff at the implant clinic for some reprogramming of my stimulators, to see if we could fix the problems with the coverage in my upper implant for my hand. At this point things aren’t looking so great and it’s looking like I might have to go in for another surgery to place a new lead. No decision has been made at this point but I have a feeling I already know what direction this is heading. Like always though I hold my head up and keep moving forward. Why do things always have to go sideways all the time? Don’t know and don’t care! I’m a firm believer that I’m going through all of this for a reason, and that at the end of all of this everything will finally make sense.
As has been the case so often while writing my post it’s been a few days in the making to put this all together. Over the last few days there’s been a lot going through my mind and it’s taken away from writing my blog. As I mentioned before I’ve been working with the implant clinic here in my city to try and fix the problems with my upper implant. The bad news is that it looks like surgery is once again in the mix! We’ve done as much as we can to try and change the coverage of the stimulator with programming and now it looks as if a new wire and lead have to be placed in my spine.
You’d think with all the problems that I’ve had with this upper implant that I’d just give up on it and say enough already, but I don’t give up when I face a fight. Even though it’s effectiveness hasn’t been 100% I still believe that it’s helping and giving me relief. So I’ll go through whatever I have to in order to keep moving forward. So as I wait to meet with my new surgeon and get put on the surgery wait list I’ll busy myself with distraction in various ways. As a matter of fact if it wasn’t busy enough with life in general I’m working on a few photography projects for clients just to add to the craziness!
So I guess I’d better hurry up and post this so that it doesn’t get put off any longer. Over the next few weeks I’ll be making a few changes to this site to give it a bit of a freshen up. It’s been a while since I did that so I’ll be doing that and adding a few other things. So I’d talk to you all soon.
I had some time this morning to work on putting up a post which as of late seems hard to do. It seems as if ever day is packed full from the minute I get out of bed until I go to bed. Last week was a bit nuts as we tried to get the basement finished and ready for everything to come back from storage. Fit in the kids soccer and gymnastics and entertaining friends for dinner and it made for a really busy week. Did I forget to mention that I had my usual couple of doctors appointments in there as well! Even though it was a busy week, it was nice to see the smile on my girls faces as they got to play in their new basement. There are still lots of odd jobs to do but it’s finally functional!
This week I’ve decided that I’m going to slow things down a bit so I can reduce some of the stress which has been causing my pain to be increased so much as of late. I also want to focus on putting a few key pieces back in place for the ongoing care that I need in dealing with my CRPS. Last week I saw the surgeon that has been responsible in giving me a quality of life back for the last time. I knew this day was coming as he gets older and will now be retiring. So tomorrow I will visit the implant clinic and set up a transition of all my files and care to a new neurosurgeon who will look after me from this point forward. At the same time I’ll have a few adjustments made to my implants to help cover the pain a little better, as I’m not getting the relief in my hand that I’d like right now.
As I was thinking about what to put together in today’s post I felt as though it should talk about walking in faith through your journey and not through fear. When I was first diagnosed with my CRPS it could have been very easy to become paralyzed by fear. You start facing all kinds of obstacles and challenges that bring on different fears. My faith was being challenged in all kinds of ways, and there were lots of occasions where I had to make choices to either live in faith, or to be held captive by all those fears. When my finances got cut in half by my disability I could have chosen to live in fear that I wasn’t going to have enough money to pay the next bill or have faith that God would put the pieces in place and provide for our family.
At what point do you stop living in fear? I allow the big problems to be lifted off my shoulders and placed upon God’s shoulders which are so much bigger than ours could ever be! Having faith though is most certainly not easy at the best of times, and trying not to let the fear seep in can be even harder. Making this transition to a new surgeon is a perfect example of that. As I make the change between doctors there are all kinds of questions that come up. Am I going to receive the same level of care? Will the transition be smooth? If I choose to dwell on these questions it can cause all kinds of doubt to enter ones mind which can then lead to fear.
Having faith is a real challenge and means that you have to give up control which for some is easier than others. For myself it’s been a learning process and there have been times where it’s been easy and other times where it’s been a real fight to let go and just trust that God’s going to work it all out. It’s something I have to remind myself about every time I’m facing anything that might bring about fear. I consciously have to tell myself that I’m going to choose faith instead of allowing the fear to deeply root itself within causing anxiety and worry. It means having a positive attitude even though I’m going through a season in my life where there are all kinds of uncertainties.
Life at the best of times is full of making difficult choices and adding an illness like CRPS certainly makes things more difficult to manage at the best of times. So my question to you is simple. Do you choose faith or fear?
I’m having a really tough week! Not only am I trying to deal with an increase in pain but I have a lot going on! We are in the final stages of finishing our basement and hopefully furniture will arrive from storage in a few days. I’m in a bit of a funk however because I’m having problems dealing with the pain side of things at the moment! The flare ups have been getting worse and my nerves have been on edge more as of late. Wait just a second, isn’t that a typical day for a person living with CRPS!
There isn’t a day when your dealing with this illness where you don’t have to battle through a day. Some of those days are easier than others, and with me I always try to stay positive no matter how hard a day I’ve been having. Lately though I’ve been having a tough time in doing that with the increase in symptoms. It’s almost as if all the alarm bells are ringing and you can’t get them to stop. Have you ever had your security system go off and when you punch in the code it doesn’t want to shut off. Or it just goes off for the strangest of reasons. Sometimes this is what CRPS does, all your symptoms starts going crazy off and you don’t know why! I continue to stand in faith that God will heal me and that the testimony in all of this will be used for His good.
I stopped asking the reasons why a long time ago and focused my attention on managing the symptoms. Focusing on the “why” only seemed to stress me out more and make things worse. If I’m having a bad day I chalk it up as just that and move on to the next day in hopes that it’s going to be better. Some days are easier than others but I always try to move forward. I get asked a lot about what I do in order to stay positve or see the good when your dealing with an illness like this. There is no one answer to this question but let me back up for a minute so that maybe you can draw some conclusions to this question.
You might be asking yourself where is he going with this? Or what point is he trying to make? That will all become clear in a moment! When I was first diagnosed with my CRPS I used to think about how the next forty years of my life was going to play out. With no cure and not a lot of hope for treating CRPS it was hard to see anything good about my particular situation, in fact all I kept focusing on at the time was all the “why’s” that CRPS forces you to think about. Now fast forward eight years and that type of mindset has changed. Why do you ask? I could either spend the next forty years of my life in misery trying to figure out why all of this happened and where my life was headed or I could live in the moment and appreciate the small things!
Still wondering where this is going? I find my joy and my happiness in all the small things that I have in my life. Like a smile from one of my kids when I’ve made them laugh, or when they tell you that even though you have a body that doesn’t work right that your still the best dad ever! That moment in time is all I need to be happy and can turn a bad day into a great day on the turn of a dime. It can be through the power of words that I hear in a song that I’m listening to on the radio as I’m driving to one of the many doctors appointments I have each month. As I listen carefully to the words they can encourage me or just plain make me feel good! Or it can be an amazing wife who encourages me every moment of every day telling you how much she loves you and believes in you!
My point is that it’s the very small things that are a part of every day that allow me to find the positive amongst all the craziness and allow me keep fighting! It’s knowing that God is walking through all of this with me that brings a smile to my face! He wouldn’t allow me to go through anything I couldn’t handle. Those small things in our lives are so much bigger than we think and you don’t really appreciate them until everything else around them is stripped away. So live for today and find something positive in each day because it’s there you just have to find it.
It’s been a really difficult week around my parts and trying to put a post together hasn’t been easy! I tried putting together a post last week but every time I tried to get the fingers moving on the keyboard my brain went into shutdown because of everything going on right now. We are putting the final push on to get our basement finished and let me tell you I’ll be doing a happy dance when the furniture comes back in a week or two. To add to all of that stress at the beginning of last week I witnessed a pedestrian get hit and killed by a bus last week.
So to say that my stress has been increased over the last few days is an understatement! I keep thinking about the family that has been affected, and the bus driver who now has to deal with all of this as well. I tried to do what I could to help the pedestrian along with someone else who had stopped but there wasn’t much we could do but wait for the ambulance to arrive. What I could do however was pray for the pedestrian! It was a long day filled with all kinds of emotion and it reminded me about how quickly life can change!
I’m now on day three of trying to put this post together and things just aren’t happening. I’m having a lot of trouble putting my thoughts together and I know a lot of that is due to all the stress. So I’ll say sorry ahead of time if this post doesn’t flow the way I’d like it to. It’s taking me a bit to work through everything that happened but slowly I’m proccessing the whole thing! While I’ve been working through all of this it caused me to think about how lives get affected by crisis, and when I think back to my own time of crisis a whole lot of emotions come flowing back.
It’s been almost eight years since I was diagnosed with my CRPS, and when I think about all the different ways in which our family has been affected my mind starts spinning out of control. So my heart goes out to the family of the pedestrian because their world has been turned upside down this week and all you can do is ask God for strength to get you through the storm that never seems to end. In a lot of ways I can relate to how that family is feeling at this moment. You just want things back the way they were. Everything seems so sureal and you can’t believe the things that are happening.
At times you just want to wake up thinking that it’s all a bad dream, and that life will pick up where it left off. The reality however is that from that day forward things will be different. In the time that I’ve been dealing with my illness there has been a lot of change for our family, some good and some not so good but life continues on and we face our battles head on. I know this post doesn’t really go anywhere but I’m physically and mentally exhausted at the moment and when I’m feeling better I’ll write a post that makes more sense!
Once again I have failed to keep this blog updated on a regular basis. Things have been crazy busy however and there has been little or no time to do everything that has to get done. It doesn’t help that I’m not feeling all that good at the moment. I’m most definitely doing more than I should but what choice do I have! I’m not made of money and so I can’t hire everything out and have to try and do some of the things myself. The good news is that we are really close to being done and once again have a working bathroom with the rest of the basement not far behind! Having gone with only one washroom for about the last nine months has been interesting to say the least!
If we aren’t dealing with our house then it’s been dealing with kids and their activities outside school. Somehow I’ve been able to manage to check my pain and keep pushing on. Some days I surprise myself by how I keep going, never giving up and always giving as much as I can in spite of a nasty illness. Today I saw that same fight and will to never give up in my oldest daughter. We were at her cross-country meet and as a parent it was one of those days where your both proud and sad for your child. As each age group entered off the course and came into the track we kept our eyes peeled for our daughter. When we finally saw her we cheered her on as any proud parent would but knew something wasn’t right. She had a look of pain on her face and looked upset.
When the race ended we discovered that twice she had fallen to the ground and been stepped on by other runners. One of those times she had been pushed to the ground by two girls! My girl got up though and pushed herself to finish the race even though she was hurting. She could have made the choice to give up and not finish, yet she was determined to give her all. Nothing can make you prouder as a dad! It was a quite evening with a heartbroken girl but at the end of the night I tucked her in and told her how proud I was of her that she kept going.
Seeing her today gave me perspective into this illness called CRPS and how you have to face each day. No matter what you finish running the race. It doesn’t matter if you walk or run but you do everything in your power to cross that line at the end. In our world of CRPS that might mean two years or it could even be twenty but the most important is that you keep going. It’s been busy over the last six months and I’m tired of all the extra pain that I’ve had to deal with. Several times I’ve had to pick myself up and brush off the dirt but I keep running.
Seeing my girl finish that race today encourages me to keep going and face any type of adversity that comes my way. Lately there have been lots of days where its been tough to make it through the day from start to finish. Seeing my girl today has renewed the fight in me to find another gear to keep up the fight.
Well week one of the school year has come to an end for my girls and I’m finally able to find some time to sit down and write this post. It’s been a bit of a crazy week trying to get back into routine and at the same time finish work on our basement. Yes I did finally say finish! Although it’s not quite done by the end of next week we should be 99% complete. It’s been a long time coming and although I never thought I’d see the end I think I can honestly say I see it now. It comes at the right time because I don’t think I can handle much more. Pain has been harder to handle as of late and the flare ups have been more frequent.
I know things are starting to get a little tougher to manage when my thought process starts to suffer. My short term memory hasn’t been what it normally would, and even trying to interpret what someone is saying can be a challenge as of late. That’s when the frustration level can begin to grow and I find myself asking God to step in and help. I’ve come a long way with this illness, and it can be so frustrating when I suddenly get tripped up and hit out of the blue by certain symptoms of CRPS. It’s that uncertainty of never knowing when your symptoms are going to strike that makes this illness so hard to handle at times. It’s that constant reminder that never goes away.
The mental and physical exhaustion with CRPS is a twenty-four hour a day job. Learning to manage it isn’t easy and when your in the heat of the fire you may think it seems crazy to try and manage it. I’ve spoken with lots of people who say they’ve tried to manage there pain and symptoms, only to try it for a short time and then give up saying it doesn’t work. Managing is a lifestyle and I’ve been doing it for almost eight years now. It took me a long time to identify and learn about my triggers and how they affected my CRPS. Then my therapists and myself had to come up with a short term and a long term plan on how to manage not only the symptoms but the pain as well. Even with my implants I still have to use all my tools every day.
My point is that it takes a long time to see the results, it isn’t going to happen overnight. Along the way there were all kinds of adjustments that we had to make to make things more effective for my specific treatment plan. There has been a lot of hard work along the way and I can honestly say that I’m in a better place because of it. Are things perfect? Not at all! The important thing is that my quality of life has improved for the better. I’ve been able to learn where the lines have to be drawn in order to minimize my pain and reduce flare ups. It isn’t a perfect system though because CRPS has a mind of it’s own and we can’t always control what it’s going to do. There are still lots of days where the pain gets the best of me and I can’t do very much.
There is all kinds of adapting and changing that goes on along the way and you have to be prepared for a fight. When one thing fails to control your pain then try another, but the last thing you want to do is give up. I know I’ve preached this message before and I’ll keep preaching it because change is possible! What it takes though is a whole lot of fight, tougher than anything you’ve done before. You might ask how do you find that fight within yourself. Well the answer is plain and simple, I pray and ask God to give it to me. Without Him quite honestly I don’t think I’d have the same fight that I do.
I’m back! The last couple of weeks I just had to take a mental break. It’s been a really busy not to mention stressful summer, and I needed to take something off of my already too full plate. It just seems like over the last couple of weeks like I’ve hit a brick wall and I’m slow to get back up. Even though I had a great holiday my body seems to be running on empty and my pain really seems to be on the rise as of late. Normally with my implants I can bounce back from my flare ups pretty quickly but lately its been taking a little more time.
We had a great holiday with my family but as soon as we got back I had to go into general contractor mode and organize all the trades that are doing work on our home. My hopes are to get our basement back by mid September if all goes according to schedule. My girls are getting ready to go back to school so we are a very busy family at the moment. When the end of the day arrives I have very little left in me and mentally I feel drained as well. So you don’t need to worry when things calm down I’ll be able to get back to a normal flow again with this site.
For me summer has been anything but relaxing. Most of the time summer is that time of the year where I can recharge my engines and find the time to let go of some of the stress that builds over the year. Some of that is starting to catch up with me and so I need to start slowing things down a bit. My CRPS has been screaming at me in so many different ways and so it’s time to start listening to my body again and not what I want to do. You see it can be really easy to do want you tell your body to do. We need to remember though that our brains aren’t functioning at 100%. It’s kind of ironic that from an early age we are taught to listen to our bodies and that they will tell us when to stop. If your dealing with CRPS then your best line of defence is to listen to your body very closely.
In my next post I’m going to get into this a little more in depth. It’s been a really long day and I need to rest and try and calm the nerves that are frazzled at the moment. As well in my next post I’ll have a few pictures to post from our holiday in Montana and Idaho as well. That is if I find the time to download them from my camera!
Today I finally had a moment to stop and write a little about our second half of our holiday. We left the Hungry Horse, Montana a few days ago and have hit the Post Falls Coeur’D Alene area which we totally underestimated! We are already planning a trip back because there is so much to do in the area. Yesterday we hit Silverwood Amusement park for the kids which turned into Dad pushing himself to the limits once again. As I mentioned before this is a trip for and about the kids and so I’m bound and determined to check my pain at the door and have fun with them. Why should I have to sit back and watch my kids when I want to be a part of those memories?
My daughter is a thrill seeker and she really loves the rides that make you lose your stomach. So I told myself I would do anything I had to, in order to ride a roller coaster called “Tremors” with her! Besides being turned upside down several times, plunging into tunnels, and being dropped about twenty stories straight down it made her day. That’s what it’s all about, making the memories that mean so much to them. My body may not have liked going on the ride but the trade off was that my kid has a lasting memory of the vacation we took to Silverwood. So you have to ask yourself is pushing yourself harder than you’d like worth it in some instances?
On day two I didn’t get to go back to the park as my youngest daughter had become ill and is running a fever and has been throwing up. So my wife went back to the park to take in the water park portion of the park with my oldest daughter while I hung around the house with the short one. I really wish we’d booked the house for a few more nights because there was just too much to take in over the three days we were there. We are already planning to return next year without any sickness! Today was a driving day up through northern Idaho into Canada again where we have just booked into our hotel for the night. I’m trying to find time to write my posts wherever I can. It’s been a great holiday but at the same time it will be good to get home to our own bed.
On the pain side of things the past couple of days have been pretty tough. I’ve been taking extra meds to get me through each day but managing none the less. Like I said if I have to put a smile on my face then that’s what I have to do. No it’s not easy some days but what choice do I have, not a lot when it comes to the pain. I just have to find a way to work around it. At the moment though it’s time to get a little sleep for yet another long day of driving!