Well I wasn’t planning on putting up a post today but the timing was right. With no kids, and no other distractions around me I thought I’d better take the opportunity now! Not to mention that I’m not going very far because my pain isn’t very good today. This is the time that I need the upper implant to be working because if it was I’d be able to control the pain better. In case you hadn’t realized it yet I’m a real advocate for the implants because when they’re working right they do work in managing your pain. I’ve been pushing things pretty hard and so the flare ups have been pretty intense and so getting over them has been much harder without that upper implant working.
So how do you manage getting through every day when your living in a world of pain with CRPS? When I think about that I could give you all kinds of answers. So many things make living with my CRPS easier but today I want to speak towards family and friends! I have such an amazing family that recognizes the struggles I go through every day. They make things easier by making huge sacrifices and so they need to be recognized for that. Often in a world that gets centred around what’s going on around us we forget about that. My wife for example has taken on two jobs to assure that we meet our financial needs. Not to mention all the extra things she does around the house. Often she does so much more just to make it easier for me! You encourage me every day to keep going. So thanks babe I love you!
This doesn’t just happen within my immediate family but within my extended family as well. Often they will make sacrifices themselves when I’m not feeling good and I want to say thanks to all of them and tell them how much I love them. It’s a huge blessing to have you all in my life and to have a family that understands as much as you do. It might be something that’s so small that you do but understand that in my world it’s huge! Not every family understands what we have to deal with every day with CRPS and I’m truly blessed with one that does. I love all of you and thanks for the support and the things that you do to make life just a bit easier.
Although you might not be family I also want to thank fellow CRPS sufferers and the countless people that I’ve met through this site. Your support gives me the constant encouragement to keep fighting and overcome this illness. I’ll often receive a comment on a bad day that lifts my spirits and it reminds me that I need to keep up the fight. Even on the good days I’ll receive comments from some of you that help me find that extra step I need to keep pushing. We are in this together and will take it on together! Some of you who have blogs need to know that I’m often encouraged by the posts that you put up and that those words truly speak to me. Lastly I want to encourage you in that you can get through this.
I want to say “THANKS” to everyone because you help make all of this just a bit easier to deal with. The message is quite simple in that the small things you do or say are so much bigger than you really know and I’m thankful for it all!
It was a busy month of June and it took a lot out of me! Rest and relaxation is just around the corner. We’ve moved out to the lake for the summer and in a couple of weeks will be off to B.C. To visit my family. I wanted to put up a quick post to let you all know I haven’t fallen off the face of the earth and in a couple of days I’ll get to putting up a proper post. I’m just taking some time to myself to recover so I’ll see you in a few days!
It’s a busy time in our household as we near the end of the school year for the kids! I’ve been trying to get to this post for a bit now but every time I try something comes up. I have to say it’s been rather frustrating because it isn’t just a five minute job in putting a post together. With my CRPS everything seems to take double the time to do especially writing. No more excuses I just have to pound this out and get it done. My pain continues to be up and down at the moment with no sign of when I might be having surgery to fix my upper implant. It’s frustrating really because I was hoping to have had the surgery before summer but it’s looking more like fall now because everyone knows that surgery slows in the summer!
As I mentioned before I keep getting distracted from trying to put this post together and the phone just rang a few minutes ago. It was surgery scheduling getting back to me after I had called them this morning. The disappointing news is that the wait sounds like it will be around another 4 to 5 months before they get to me. Let’s just say that my heart sank a little knowing that I have to wait even longer now. I am on the cancellation list however so I hope I get called sooner rather than later. Surgery wait times are suppose to be getting better in our country, where they are trying to get a patient in for surgery between 3 and 6 months after agreeing to surgery. If I end up waiting another five months I’ll be at almost a year I had to wait. That doesn’t really fit into their target times does it!
What do you do though because there are people just like me who’ve been waiting just as long as me and so I have no right to complain. You just have to take it all in stride and do the best you can until the call comes in with your scheduled date. When speaking to the person doing the scheduling I had sympathy for her in doing a job that I wouldn’t want. Every day she has the task of telling people like myself who call “sorry you have to wait just a little bit longer for your surgery”. I think as the patient we need to step back and no matter how disappointed we are with having to wait, understand the difficult job they have at hand. It’s not her fault that there aren’t enough surgeons or that there isn’t enough time in the O.R. They are doing a tough job and too often people call them up yelling at them about how long they’ve waited!
I know that we are frustrated by the long waits but we need to have a little understanding and that they are doing the best job they can do. It’s your local government that needs to be lobbied to make a difference. Let the people doing the ire job do just that, they don’t need us making the job any harder believe me. I’m not saying not to check up with the person scheduling surgeries I’m just saying that when you do, go into it with a little compassion for the person on the other end. Find out all the facts first before you get upset! Our pain sometimes gets the better of us and sometimes we want things now. That isn’t always possible and there are other people out there just like you and I who are in fact worse off believe it or not. Who knows someone needing a new heart might have been scheduled before your surgery. There are reason that we may not necessarily know that others get scheduled before us. This isn’t always the case but I just want people to think about that.
So just like that this post has been written! It wasn’t what I’d planned on writing but it was something I felt I needed to talk about because too often we complain. I don’t want to be that person. I can be disappointed but I don’t want to be that person who complains and takes it out on others!
So you might be wondering why I haven’t posted anything for a while! Once in a while you need to step back and take a break and this has been one of those times. So I decided to take a few weeks away from the writing and put more focus on looking after my health. Putting this blog together takes time and a lot of energy and so when I’m having more flare ups and pain it takes twice the energy to put it together. So I was finding that trying to put together my posts was taking a lot more out of me than what I had in the gas tank! Don’t worry I’m not going to stop blogging because this site is just to important to me! My last post will be the day that I am able to put up a post saying that I have no more symptoms and have full function of my arm and leg back!
So in a way I wanted today’s post to be about a fresh start putting the last several months behind me and focusing on moving forward. My biggest strength in fighting my CRPS is meeting my setbacks or any adversity head on. I’m not going to let it stop me from living life. When I look at all I’ve been through over the last eight years I’ve come a really long way and inch by inch I’m winning even though there are days that it doesn’t feel that way. Giving up isn’t an option! God has always been faithful in helping me get through any and every setback and I need to put control back into His hands with this latest setback. So why should this latest one be any different? God has a plan for my life and I have to trust that He will walk me through all of this to reveal that plan.
My message is simple “Never Give Up”! I can’t tell you how many times I’ve had to face an obstacle and wanted to give up. It took a good long time for me to realize that giving up wasn’t an option, and that my happiness in life doesn’t come from hopes and dreams that I once had. Happiness comes from knowing the greatest things in life and knowing the value, the purpose, and destiny of ones life. I want to know the destiny that God has planned for my life, and I get excited and motivated to move forward when I think about this. If He’s already doing amazing things to get me through my CRPS then what plans does He have for my future or my destiny in life. You never know what’s going to come from all the broken pieces when you pick them all up and that is something that I want to know.
You see I look at things a little different now than when I was first diagnosed. I want to come out on the other side of this illness and prove the doctors wrong! My goal is to be able to weather the storm and then when I come out on the other side be able to speak into people’s lives and tell them ” yes it is possible to beat CRPS and live life to it’s full potential”. Most of all I want to be able to live out the destiny that God has for my life. If I give up then it’s the worst thing I could possibly do because then I’ll never get to experience all of that. So what choice are you going to make?
Well we’re back from Easter holidays ready to get back to the regular routine. Actually for a few days now we’ve been getting back to it, I just haven’t had the chance to put up a post. Our family spent the holiday out at our cottage which is always relaxing. It was a much needed break with my CRPS having a mind of it’s own as of late. We also didn’t want to be around the house in the city because we were having new flooring put in through a few areas of the house. It’s kind of hard to cook when your kitchen is in your living room. There is still no news as to a surgery date but I just have to remain confident that it will happen soon.
Today’s post is about self-confidence! The reason I chose to address such a topic today is because its something that you have to keep such a close eye on. CRPS can shake your confidence to the very core, and lately I’ve had to stay on top of it in order to stay confident within my situation. Some days I do a good job and others not so good! When I get irritable it’s easy for the pain to try and take control of my mind, and then my confidence starts to slip and it isn’t so easy to stay positive. Just ask my wife about the times that I get a bit grumpy or short with my family! The pain can push me to the point of no return, and if I don’t give myself a pep talk to turn it around it can start a spiral in a direction that I really don’t want to go.
Recognizing what causes you to lose self-confidence helps you to change your situation. Can you identify what’s causing your confidence to be shaken? The stakes are high with CRPS and there are a lot of things at risk or that can potentially change in ones life, and because of that sometimes you become paralyzed in fear. As a result your confidence becomes shaken and you might give up on your hopes and dreams. If you want to identify what’s causing it to be shaken then you need to ask yourself a few questions. Are there to many “unknowns” and do you lack control of your situation? Do you have a clear path or plan on moving forward? What about your situation is causing you to be unsure of yourself? Once you ask yourself those questions and figure out what’s causing your self-confidence to drop then it helps you formulate a plan and change your situation.
When I was first diagnosed there were a lot of unknowns and it paralyzed me with a lot of fear! I’d lost control of my particular situation and so I had to hand everything over to God. I didn’t know what my future was going to look like or what day to day life was even going to look like. I had to entrust that God was going to handle everything and every situation that I faced. CRPS tries to steal away your confidence in so many different ways, and early after my diagnosis it was being attacked on all sides. Through a determination from within however and a lot of help from God I was able to stop that attack that was affecting me so much. It doesn’t mean that I don’t have to stay on top of it though because I do. As you face various situations as you deal with your CRPS, it’s only natural that your confidence level is going to come under attack. How do you handle it?
So often we focus on dealing with pain or the symptoms that come as a result of CRPS. I really wanted to speak towards an area that is just important! It could be the reason that you find yourself stuck and unable to move forward with your life. It could be the difference between you achieving your hopes and dreams and not achieving them. I don’t know about you but I want to achieve mine!
Happy Easter everyone! As we head into Easter this weekend I thought I’d take the time to put up a post before we head to the lake. Like always we will be headed out to our cottage to spend the Easter holiday with family out there! I’m looking forward to being out there with family and don’t really want to be at home in the city because we are having new floors installed while we’re at the lake.
I’m writing this post tonight with a bit of a heavy heart. This week I found out that the surgeon that’s been responsible for my care over the last couple of years passed away suddenly on Sunday night. Words don’t really explain what he did for people suffering from chronic pain over the years. Dr.K.Kumar was a world renowned neurosurgeon who had been recognized through numerous awards for his achievements in the field of neurosurgery including the Order of Canada in 2009. He will be missed by many not only in the medical community but by those of us who he has helped in trying to deal with our various issues of chronic pain. Over the time that he was my doctor he did a lot to help with my CRPS.
I can still remember the first time I went in for surgery to get my first implant. At that point I still wasn’t sure if I was making the right decision or not in getting the implants. He came to my bed before the surgery and I still remember him grabbing me by the arm and saying to me “we’re going to try give you back a quality of life you haven’t had in a long time”. Those words really stuck with me and for the first time I really saw how much he cared about me as a patient. At that moment I knew that God was putting me in the hands of a surgeon that was going to make a difference, when up until that point nobody had been able to help me at all. I had been going back and forth in my head should I do this or not. In that five or ten minutes before the surgery talking to him there was a calmness and peace that I had that this was right! It wasn’t him saying all the right things, it was the look he had and how sincere he was about what he was saying. You could hear it in his voice and see it in his eyes!
I feel very blessed that I was able to get treatment from someone with such skill and so much knowledge in his field. Last May after my most recent surgery he informed me that it was time to slow down, and that he would be retiring so he put me in the care of a new neurosurgeon. There were a few mixed emotions because its hard to leave a doctor when you know your in such good care. Sure there were times when I didn’t agree with what he was saying but I had to take a step back and ask myself who the expert was! Not me that’s for sure! Twelve hour days in surgery followed by other countless hours in his office after that showed just how much he was dedicated to his patients. I can remember my first appointment and seeing him in his office at eight o’clock at night. A doctor at the hospital I’d been seeing called him and without hesitation Dr.K.Kumar said send him down I’ll stay and see him. There was no clock in his head! It truly showed his level of dedication to his patients and the field of neurosurgery.
A couple of years ago I was hardly walking and he was the reason that I can walk without a cane today. Even though my CRPS is still affecting my life in a lot of ways he made a big difference and gave me a quality of life that I didn’t have before. When I met him for the first time that was what he said he’d do for me! He told me point blank that there wasn’t a cure for my CRPS but that he could make a difference in how I could live my life. Dr.K.Kumar will be missed!
It’s been a while since my last post but I haven’t been feeling up to writing much over the last few weeks. It’s been a really rough go as of late and with my upper implant not giving me any relief, my pain levels have been pretty up and down. I’ve been having quite a few flare ups and trying to get them under control is taking up a lot of energy. My nervous system is so tightly wound up at the moment that it takes next to nothing to bring on a flare up! Add to all of this a cold that I’ve been fighting to get rid of a cold over the last few weeks and I’d say I’m not having a lot of fun at the moment.
It seems that over the last few months things have been more unstable when it comes to keeping my pain under control. With my upper implant not working properly, it’s like the CRPS is trying to gain the upper hand. Any opportunity it has to unleash it’s wrath on my body it’s been trying to take but I won’t let it win. This go around has been really tough but like all the other times I find a way to bounce back and get back on my feet. It’s exhausting both physically and mentally but the only way to win is to keep moving forward. As hard as it sometimes seems I know I’m going to win this fight because giving up isn’t an option. When your learning to ride a bike and you fall off what do you do? Get back on!
So enough negative for today because I don’t believe in staying in a negative frame of mind. Actually it’s morning now because there was a writers block that was going on last night so I gave up. As is so often the case with this disease you go into a mental fog a lot because of the medications and the illness itself. So rather than try and push through it, I just step back now and take a break so I don’t build up stress. So sometimes it means I have to space out posts because I’m just not clear up in the brain.
When your trying to overcome an illness like CRPS it can be so easy to only see the negative things that surround you. As a result people don’t focus on the positives they’ve got going in their lives and it prevents them from moving forward. So you see among all the pain and the difficulty right now, I’ve got some pretty good things going on in my life. Take my family for example. Before all this happened I was a huge sports person, playing sports like golf, tennis, hockey, and others. I have a daughter who shares a love of sports with me who is playing competitive soccer. Even though I can’t play the sport myself I get to live that passion for sport through watching her play. Not only do I get to be a proud father watching his daughter play something she loves but watching her and listening to her talk about the sport fills a huge void in my life.
Recently I joined a group of photographers who post their photographs on a National Geographic site. It’s a great way to see other photographers amazing works, and it gives me some great ideas for my own work. An added perk though is that two of my photographs that I posted to the site are being considered for publication! It has always been a dream of mine to have a piece of my work published. Maybe that will happen or maybe it won’t but the very fact that its even being considered brings an amazing amount of joy to my life.
The biggest positive is that God is doing is there bringing me strength, joy, hope, and so many things as I walk through this journey!
Today is the perfect day to write a post seeing as I’m stuck in bed! Overnight things turned very nasty and my pain level has shot up. It’s days like this where I have a hard time because out of nowhere my symptoms explode and leave me pretty rocking in the fetal position. This leaves my wife having to pick up everything that needs to be done with the kids or around the house which I can’t stand! At the same time however I’m lucky enough to have a wife and family that understand that I need space and time alone to get through a flare up like this!
I guess I’m writing this post during my flare up because I want those of you who don’t understand CRPS or know much about it, to see just what one goes through while dealing with a major flare. When things get this crazy and out of control with my CRPS a lot of the time all you can do is hang on and go for the ride. We were out at a dinner last night and by the end of the evening I knew things were getting worse with my pain and nervous system. In the middle of the night I tried adjusting my stimulators to get things under control but that wasn’t making much of a difference. With my nervous system in pure revolt all I could do was lay in bed trying to take my mind off the pain. It might sound easy enough but when you “CAN’T” get your mind off the pain because something upstairs in your head isn’t working quite right, it all of a sudden it isn’t so easy!
It was a night of tossing and turning trying to get some form of relief that never really came. I layed awake most of the night! As morning came things didn’t really ease at all and there has been little or no relief since. I don’t know how to describe it but the pain I feel at times like this cuts to my inner most core making me almost sick to my stomach. I try to read or do other things to distract myself and take my mind away from the pain, but it’s too intense and I find I have little or no attention span to do anything else but think about the pain. My appetite disappears and I find that trying to do the simplest of tasks takes everything out of me. Needless to say it puts a stop to anything and everything.
Today is one of those days in my fight with CRPS where you feel helpless because your unable to control what is happening within your body and brain. To most of you who are reading this the first three paragraphs are just that, paragraphs in a post that your reading. To me they are three paragraphs that I’ve had to struggle for the last six hours to put together because my thought process keeps getting disrupted. People that don’t know about CRPS or understand it, don’t realize that it’s so much more than just dealing with the pain. It’s a pain that debilitates!
The rest of my family has gone into quiet mode because when the kids start yelling, it sends my nervous system into distress and makes the pain worse. Being alone so that I can have quiet at this point is the best thing for me. If it wasn’t for my faith and having God with me at moments like this I’d probably go crazy! I’ve spent the day today laying in bed with pain shooting down each affected limb, along with spasms that are like lighting bolts. It makes for a real party that goes on within this body.
Did I mention at all I’M HAVING A BAD DAY! I don’t want people to feel sorry for how I’m feeling in any way! Rather I want people to know that I draw strength from times like these. I am not weak but strong and will fight with all my heart and soul to overcome adversity.
Hi again! It’s been a little over a week trying to put this post together, needless to say it’s been a lesson in frustration. With the increase in medication for my pain I’ve found that concentration for any period of time has been more difficult than usual. It doesn’t normally take this length of time to put together a post but I’m struggling at the moment. I’m in defence mode trying to get everything under control to be more comfortable. At least until I have my surgery to replace the stimulator that isn’t really working. I wanted to include a few more trip pictures so enjoy as you read through.
Up until the last couple of months my CRPS has been under control the best it can be given the nature of the illness. The last few months have without a doubt been more difficult however and my pain has become more difficult to manage! There is hope though because I can get back to where I was after I have the surgery. Yes! There is a long recovery but I’m refusing to believe that I’m going backwards rather than forwards. God is with me and encourages me every day when I need it the most. Over and over I’ve faced adversity through this illness and every time God helps me get through it. Like a boxer who gets knocked down but refuses to stay down, I bounce back up on my feet and get back to the task at hand.
None of this would be possible without God encouraging me and strengthening me as I go through all of this. The long nights like tonight where it’s 3:00am and I can’t sleep because of my pain are hard to deal with, knowing that I need to get up in the morning to be able to function with the rest of the family. Faithfully though He gives me the energy that I need to get through the long days and long nights like these. To be blunt nights like tonight suck! But I know that I’ll come out just fine on the other side because I’m not alone through this fight. On nights where things get like this the emotions of what I’ve had to walk through on this journey come right to the surface. As like so many other times though God always brings peace over me when I need it the most.
I guess the hardest thing about flare ups like tonight and several times in the last week, is being reminded of just how quickly things can change with CRPS. You don’t get to make a lot of choices when it comes to the illness itself but you can choose how your going to let it affect you. I’m not going to lie! Trying to put my thoughts together for this post has been brutal! I don’t know how many times I just wanted to give up, the fight inside me though said not to give up and to push through.
My intent tonight wasn’t to write something that was a real downer but to give you a snapshot of what I face daily while living with CRPS. Some days I feel fantastic for a person who’s living with chronic pain and others not so hot. I don’t think this blog would be real unless I gave you some of the bad with the good. Your emotions are constantly being played with, and there isn’t a day where I don’t have to ask God to bring things back under control. On the turn of a dime things can change with this illness and you have to be ready at all times to fight more than you’ve fought in your life. My fight right now is preparing myself for the surgery that I have to face once again. Knowing the increase in pain I’ll have to face and the healing time honestly makes me want to cry! I don’t want to go through that all again but know it’s necessary if I want to get the pain under control.
When your living with an illness like CRPS sometimes just finishing what you started is a big accomplishment! Tonight I did just that!
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!