This weekend the temperature is suppose to fall to a balmy -59 C! Something is just so very wrong about that! There is cold and then there’s ……… ! Sorry no words can really describe weather like that. My plans are to stay inside and try and stay warm. My CRPS isn’t liking the extreme temps this winter and this weekend I’m sure will be no different. Not having my upper stimulator working properly isn’t helping matters. I’ve had more flare ups in the past few weeks and need the stimulator fixed asap! Any time spring wants to show up is fine with me. Apparently however the groundhog saw his shadow so six more weeks of winter it is! Yipeee!!!! Can you tell that it excites me. No wonder I found myself going through my pictures of Hawaii this week. So here’s a few more for any of you needing to think warm thoughts!
I know! I know! I’m from the prairies and I’m not suppose to complain about the weather because this is a part of life here but sometimes you reach a breaking point. I think I’ve reached it! This will be one of those winters where we set a lot of heating cost records. Not to mention how the weather can change the life of a person living with this illness. I’ve spent a lot of time indoors this winter. I usually try and get out to do some photography over the winter months but it’s just been to cold not to mention that the camera equipment doesn’t like to work.
So I think two paragraphs of ranting about our weather is good enough and that I need to move on to something else. I’m worn out this week and trying to find energy to do the things I need to do has been a real effort at the best of times. I had planned to give my website a bit of a facelift but I just haven’t felt up to doing it. So I apologize and hopefully in the next few days I’ll begin work on that. It’s been a while since I’ve done anything to my site and so I’m feeling the need to make a few changes. One of the changes I’ll be making will be to overhaul the links to other CRPS sites. So if you know of any good ones that you’d like to see me put up on my site then please email me the links.
The main focus of this blog has always been to tell my story while living with CRPS and to encourage others that we can get through this together and by supporting one another. That will always be the way I focus my content on this blog however I need to do a better job at mixing in more content that speaks to CRPS and the specifics about the illness itself. I’ve always felt however that it’s important to let the professionals do the speaking about CRPS itself, so that I don’t misinform people about our illness and chronic pain in general. So I’m still thinking about how to add that content into my posts. Lots of small tweaks are on the horizon so keep checking back. If you have any suggestions about things you’d like to see added to my site then please send me an email with your ideas. I’ve even thinking about adding a section to my site to sell my photographs where the proceeds would then go to CRPS research. I’m still very much in idea mode at the moment!
On the surgery front I’m still waiting to get a date that they will fix my upper implant. For the time being I’ll increase my meds to try and get me through. I’ve also increased the prayer asking God not only to give me strength to keep fighting but to heal my body. Well the kids are needing some daddy time along with my amazing wife so I’d better wrap things up for today. Stay positive and keep fighting!
This week has been one of those weeks where you just want to put it all behind you and move on! I kept finding that I was transporting myself back a few short weeks to when I was on the warm beach in Kauai! There wasn’t any stress and everything was moving at a much slower pace. I’m including a few pictures in my post today to try and take me back in time. This week the stress level along with my pain has reached the critical level once again! I don’t know quite what set things off but over the last couple of days I’ve been having a really hard time controlling pain. I’ve spent most of the weekend trying flat on my back trying to quite my angry nervous system!
So why was this week one of those weeks? I went to see my new neurosurgeon about the problems I’ve been having with my upper implant. One thing led to another and to make a long story short I’m going to be having two more surgeries. The lead that goes in to my spine has shifted and so a new lead has to be put in in order for the stimulator to work properly. We’ve tried over and over to fix things through different programing but it just isn’t working and now we have the reason why.
In order to manage the pain I’ve had to increase my medications and hopefully in a few days things will stabilize. This is the unpredictability of CRPS at its best and the reason you don’t know how things will be from one day to the next! I hope things settle down quickly though because our kids started their week break from school on Friday and I want to get out and spend time with them.
At this point in time it would be easy to get down and say just take it out already! However I’m not willing to give up on something however that in my opinion works! Even though it’s been several months since the stimulator has worked properly it was giving me some relief in the hand. What people need to understand is that the stimulators are not a cure. They are a way to control or manage your pain better and I sometimes think people forget about that. Even though my hand doesn’t get the same relief from pain as my foot, it was working well enough to take the edge off as I like to say. The stimulator helps to manage the frequency of flare ups and other symptoms that I suffer from.
If I can reduce my pain meds enough so that I’m not walking around in a constant haze and so that my nervous system is a little more under control all the time then those are successess in my opinion. In no way am I saying that the stimulator will work for everyone but if your left with no choices then what do you do. We all want a cure for CRPS but at this point there isn’t one, and sometimes I think it can be easy for people to jump right over what’s right in front of them. What I mean by that is people often focus on the things that are out of their control instead of things they are in control. Your time and energy needs to go into managing your pain not focusing on when a cure might come.
Giving up on managing my pain isn’t an option! It’s a daily struggle with this illness. The last four or five days I’ve been in a war with my CRPS trying to get things back under control. At this point in time there’s nothing I’d rather do than climb out of my skin. So what’s more important? Getting all those symptoms under control or worrying about when a cure will happen. I’m not saying finding a cure isn’t important at all because we need a cure in the worst of ways for my sake and everyone else out there. What I am saying is that it’s a lot of hard work to manage your illness. You have the choice to either do that hard work or wait until they find a cure.
Every day I make that choice to do whatever I can do to improve and decrease the pain. Some days it works and some days it doesn’t but at least I’m trying to improve my chances at a better quality of life! Every day God gives me the strength and ability to put one foot in front of the other to continue on. Some days are harder than others and sometimes I wonder when this crazy journey as I call it will end but He always renews my strength and strengthens my spirit. This past week has been one of discouragement but I’m choosing to move forward and not let it slow me down.
When I last updated this site I was in Kauai on holidays basking in the warmth of the sun! There are so many highlights to a great trip. The best part about getting away on this trip however was being able to slow down and forget about the pain and the daily grind in fighting this illness. The amazing scenery that surrounded me couldn’t have served as a better distraction! For the first time in who knows how long I was able to get lost in my photography, and through the course of this post you’ll see a small sampling of the photos that I got while I was there. Somehow I managed to take over 800 shots while there and I probably could have taken more.
While we were away I was able to stay pretty active although by the end of our stay I was starting to feel the affects of the increase in amount of activity. When your on holiday there is so much you want to get out and do as well as see. So although you tell yourself that your really relaxing and that you can take things easy, your always end up doing more than you think! I managed to pace myself through the entire trip but it still took a lot out of me. The hardest part with our trip I’d say was the travel to get to and from Hawaii. The hours of flying and the pressure changes on my affected limbs made my pain more of a challenge to deal with. This is a life with CRPS however and you can’t let it stop you from trying new things or getting out and being as active as you can.
Over my time away with my wife I had time to reflect on how things have changed since my diagnosis. The biggest change of all however is in my mindset and how I look at everything differently from when I was first diagnosed. Over the seven year span since first being diagnosed my attitude has gone from “I can’t” which then turned into “I’m not sure” to where I am today which is “I can”. It isn’t easy and every day is still a challenge but I take on each day as a new challenge and that I’m going to push just a little bit harder and find something positive to take away from it. God has truly transformed the way I think about my life and how I choose to live it. My body may not be the same but my mind is still mighty and powerful and can be used to accomplish so much!
Am I passionate about finding a cure and getting the use of my limbs back? Absolutely! What I’m not willing to do however is sit around feeling sorry for myself and waste the next twenty years of my life in the process. I believe God has challenged me to work within my disability and live an amazing life, and that through this disabilty will come amazing things. My story is still playing out however and so as much as I’d like to tell you how it’s going to end I can’t right now. I’m sure I have more challenges and struggles to face in the months and years to come but it’s all part of God’s greater plan in my life. I know in my heart that He’s using the positive and the negative to grow the faith I have.
So on the point of not wanting to sit around feeling sorry for myself I challenged myself while in Kauai! I wanted to go zip lining while we were there. When your living with a disability the first thing that goes through your mind is that there’s no way I’m going to be able to do this. With one hand and one leg I shouldn’t be able to do this right! I had to use my mind to overcome the odvious and not allow it from stopping me. All it took was a little digging into finding the right company that would work with my disabilty and I was able to have the experience of a lifetime. Dangling from a wire 250ft off the ground is an experience let me tell you! Your brain is going to try and tell you when your dealing with a chronic illness that there are lots of things you can’t do! I refuse to let my CRPS make all the decisions though and won’t give up trying to bring about positive change.
I’ve said it before and I’ll say it again! Don’t let CRPS stop you from doing the things you want to do. Expect that your going to fall sometimes but know that you can always get back up. The illness we live with is cruel and causes so much pain and sadness in a person’s life. I don’t want to be that person! Somewhere deep down there’s happiness and a great life awaiting you. You just have to say a little prayer and find it! I’ll be posting more pictures when I get finished going through them.
After a really long trip we finally arrived at our little island paradise. Even though my wife and I were exhausted from a long day of travel when we arrived at our cottage we had rented we knew this was going to be something special. It was late at night when we drove in but you could tell as you were driving in that you were in the middle of a lush green tropical paradise. With the time change it was about 3am our time when we got to bed so the first day yesterday we were pretty tired. My body is trying to process and deal with a fare amount of extra pain but I have some great distractions to keep me busy, and to keep my mind off the pain. All the flying and the pressure changes have caused some extra swelling and I’m sure it will take a few extra days for my body to sort things out.
Nothing could prepare me for what we saw the next morning as we saw our surroundings for the first time in daylight. No wonder they call this island the “Garden Island”! I can’t begin to put into words how lush and green everything is. All I can say is that my camera is going to get a real workout while we are here. I have to say it was worth bringing all my camera equipment with me. With the two of us being pretty jet lagged we decided that the first day we’d stick to driving around to get our bearings as well as take in some of the amazing sites and beaches along the way.
I started writing this post the other day but the internet connection in the place that I’m staying was having connection problems so I couldn’t continue! So here I am a couple of days later a bit more refreshed and over the jet lag. We’ve spent the last couple of days touring this amazing island seeing so many great things. We’ve even had the chance to go snorkelling a few times which was high on my list of things to try. I was a bit worried that I wouldn’t be able to do it because of my disability but with a little adaptation we made it work. All it took was a life vest so I could float and when I needed to move somewhere my wife was there to help me swim. There was a sense of accomplishment to just getting in and trying! Too often people say “I can’t” before they even try doing something. The way I think of things is that you try first and then your justified in saying that you can’t.
Without a doubt my pain level is up and down at the moment but I’m making sure that I take things easy and that I don’t push to hard. The hardest thing at the moment is trying to get my body onto the proper schedule. With a four hour time change my body starts needing my meds at all the wrong times, so it’s taking a little bit to adjust. What’s very nice here however is the constant temperature. Without the drastic swings in temperature it makes the CRPS easier to manage. Maybe I need to move!!! Wouldn’t that be nice!!
With yesterday being such a busy day I’m feeling the need to slow things down a bit. So today we’re going back up the east side of the island to visit some of the local markets and to watch some of the amazing surfers on the north shore. The forecast today is for 40ft to 50ft swells so I hope to see some great surfing and get some great shots as well. Well I guess it’s time to get out on the next adventure so I’ll update again soon.
Here I am again except this time it’s Thurs night and it’s the eve before our trip. If I could sum up how busy the week has been the one word I’d use is insane! Ever since the weekend it’s been none stop and my body doesn’t react very well to all the extra stress. I’m dealing with quiet a bit of extra pain at the moment but I know when I get on the plane tomorrow all that extra stress is going to fall off. Although I still have one big hurdle to get through and that’s all the travel. It’s going to be one very long day tomorrow and I only hope that I have a good pain day.
The last couple of days my symptoms have been a bit worse and I really need something to be done with my upper implant. The good news is that today I got the news that a date to see the surgeon has been booked. The week after we get home I’ll be going to see him and hopefully move to a surgery date after that. At least there is a little forward progress as I can’t keep going without something being done. Over the last couple of days I’ve been dealing with a constant dull headache and I haven’t been as sharp mentally as I know I can be. When things get like that I know the CRPS is trying to wage a war, so I know I have to push back twice as hard to win the fight.
Our trip to Hawaii couldn’t come at a better time, as I know my body and mind can use the distraction. I’me really hoping that I’ll be able to distract myself taking in the world class scenery and better yet capturing a few world class photos along the way. The last time we were in Hawaii I wasn’t able to snorkel because without the use of my hand and foot I can’t swim. This time I’m going and my hope is that we’ll do something called snuba which is a combination of scuba diving and snorkelling. It is a perfect fit for someone with a disability and allows me to not have to miss out. I always look for ways that I can modify my holidays so that I can still have a good time and not have to sit on the sidelines all the time.
I get a feeling that this is going to be one of the best holidays yet and what makes it all the better is that I get some alone time with me wife. Living with CRPS can grind away at a relationship and cause a lot of extra stress. You have to take time out every so often to build each other up and take back what CRPS try’s to steal. So I’m looking forward to a lot of great laughs and quality moments together. Well it’s almost midnight and I have a long day ahead of airports and planes so I’d better get some rest. I’ll try to put up a post while I’m away along with a few photos. For the most part however my plans are to leave most of the technology behind. Talk to everyone soon!
Happy New Year everyone! This year for New Years we decided to see a movie with the girls followed by dinner ordered in! My youngest daughter has been sick with bronchitis and and has an ear infection so we decided not to do to much. Any way you look at it though it’s been great because we get to be together as a family spending lots of time together.
Christmas was a lot of fun even though I had to manage a few flare ups over the coarse of the week. I just focused on staying on top of the pain and not letting it get out of control. It was great spending time with family, and getting away and not having to go to a doctor’s appointment was even better. I was also reminded about how blessed I am to have the amazing family that I do. We are a large family and we had a total of 39 people at dinner! I always go into dinner not knowing how my CRPS is going to be affected but this year went pretty well. The weather smartened up for Christmas day and we were able get outside with all the others in the family and enjoy some skating on the lake as well. Well in my case I watched! Great food, great conversation, and great company it doesn’t get any better than that.We really do have the best Christmas’s in our family!
For the most part the holidays have been really quite and so that helps with the CRPS. Visiting with relatives and family has been just the right amount of time so that my flare ups have been held to a minimum. In other words I’ve managed to make it through another Christmas season. It might sound like a sigh of relief that I got through the business that this time of the year brings but it really isn’t! It’s just what life has become now and building in all the skills to manage day to day is just a part of my routine. It took some time but now those tools have just become second nature and I don’t have to think about them. If I feel as though a flare up is about to start my mind automatically goes to what I have to do in order calm my nervous system down.
This winter has been extremely cold here on the prairies. It seems as though we’ve had a few days here and there where the temperature hasn’t been -35C. I’m sure there are those of you who suffer from CRPS who can agree with me when it comes to the cold. So in a couple of weeks I’m looking forward to taking in some much needed warmer temperatures! That right two more weeks until Hawaii!! That’s right 15 days until we touch down on the tropical paradise of Kauai! Time for some much needed alone time with my wife and to relax and do whatever we want. Now if you ask me if I’m looking forward to the travel side of things I’d give you a different answer. Going through airports can be tricky with all the metal and wires I now have in my body. Often I tell security not to waste time and load me in to the body scanner so as to speeds things up!
Kauai is one of those places that I’ve always wanted to photograph so needless to say the camera gear is going with me. It’s been a while since I’ve been able to get the camera out so what better place to get back into it! It’s a perfect start to my photography portfolio for 2014. Between surgery and a basement being renovated last year I almost feel as though last year was a lost year when it comes to my photography. I look forward to spending more time shooting and developing my skills, trying to keep my mind away from the pain. For Christmas my wife gave me a fantastic present of a two day workshop to Greg Johnson the Storm Chaser. If you’ve ever seen his photography it’s amazing!
I should probably wrap up things for now so Happy New Year!
I hope everybody is having a great Christmas! I just wanted to put up a quick update and say Merry Christmas even though it was two days ago. We don’t have full access to the internet out here at the lake so I have to either check my phone or use my sister in-laws.
I hope you all have a great holiday season with family and when we get back to the city in a few days I’ll be able to update you on how things went!
Yet again I’ve fallen behind on my site sorry about that everyone. It’s that time of the year again Christmas! The thing about this time of year is that it’s my favourite time of the year but it’s also the toughest time of the year. All the hustle and bustle that goes on is stressful to a person living with chronic pain. The added stress makes pain worse and if you have CRPS some of the triggers that set off my pain are really unavoidable at this time of year. Getting together with family and friends and just hanging out is so much fun, but it doesn’t come without a price attached to it. Over time though and with lots of practice I’ve been able to manage those triggers to the point where I don’t let it ruin my Christmas.
The girls get an extra long holiday this year because of where Christmas falls, so at the end of the week school is done until Jan 6 and we get to enjoy lots of lake time. Family will come from out of province and Christmas will be great as it always is but sometimes it all gets to be too much and I have to take some time out for me! Fortunately I have a very understanding family and they know what I have to do in order to keep my pain levels under control.
My family means the world to me and no illness or disease is going to take that away! This is the time of the year when all the alarm bells start going off and I sometimes want to crawl out of my skin, and I know a lot of you who suffer from CRPS can identify with that. I have to put all the coping skills I’ve learned into action to be able to function in and around family and friends. I know I’ve posted about this before but I want to encourage you to try to put those skills to use because they really do work!
If you don’t about what coping skills I’m talking about, then email me and I can send you a reply with some of the things I put into action in order to calm down the flare ups. Christmas should be a time where you enjoy being around all your family and friends not having to isolate yourself because you can’t cope with your pain. I’m not trying to say that by using all your coping skills that things will be perfect and you’ll be totally pain free because that isn’t the case. The last time I checked this illness was called CRPS and you never know when or where the symptoms are going to hit. If you manage the pain though it can make things a little bit easier to handle.
So my message to all of you out there who find this a hard time of the year to deal with is this. Don’t give up! It took me a long time to figure out what worked and what didn’t when it came to dealing with Christmas with my family. I had to figure out what set off my triggers that caused flares and how to work with them. This is a really busy time of year for most families and the best piece of advice I can give people is to pace yourself. Make sure that you take time out for yourself when it all gets to be to much.
So for now I say Merry Christmas! I’ll talk to you all soon!
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.