Attempt number three! Yesterday at this time I was working on attempt number one when something went wrong with my template and I lost my latest post. A few minutes ago as I was working on attempt number two again something happened and I lost the post again. So here I am working on it for a third time. So frustrating! Sometimes I don’t understand modern technology. Ok it must be my inner old talking! Anyway I had my temper tantrum and now I’m over it! Last week I got back from holiday with my family and now it’s time to get back to writing. The summer is quickly coming to an end and it won’t be long before our family is back into routine for the school year. Where did summer go? I know here where I live it was a summer filled with storm after powerful storm hitting our amazing province. It just seems like summer never got off the ground. At least while we were out on the West Coast we had great weather and it felt like summer. I’m looking forward to getting back into a regular writing pattern here on my site as well.
Where is my pain level right now? There aren’t a lot of changes to tell you about at the moment. I’m still having lots of good days mixed with bad ones and I’m still waiting for surgery to fix my upper implant. Yes still waiting! It’s been really hard waiting for my surgery but what make my medical issues and more important than anyone else living with chronic pain. Nothing! It’s just hard waiting for a surgery that should have happened months ago and probably won’t happen for another five months! I need to have grace for a system that’s maxed out.
Nobody wants to wait especially when your living in pain! Often it’s the pain itself causes us to become irritable towards those people around us that are just trying to help. I’m guilty myself and know that on more than one occasion have become angry with the system. It’s an area that I’ve had to ask God for a lot of grace. It can be easy to lose site of the person in front of us that might be fighting for their life and may not live past tomorrow. I’m not saying the system is perfect by any means because believe me it has it’s flaws! At the same time there are specialized medical professionals out there that are very dedicated to helping us get better who we don’t spend enough time saying “thanks” to. When you ask someone about their experiences with treatment, often the first thing that pops to the front of a persons head is what didn’t go right. Why is that because there are quite a few positive experiences people have as well.
I think in a lot of instances it happens because we want help and we want it now. I say we because I’m just as guilty as the next because I’m desperate to get rid of my pain. The desperation and the frustration sometimes boil over making us say things without looking at things rationally first. Sometimes on the days where I’ve had no sleep because of the pain or the other symptoms, a person could say “hi” and it would be the wrong thing to say to me! That same happens when we have to wait a really long time for an appointment or surgery. All we hear in our head is “you have to wait” instead of looking at the reasons why. That desperation, anger, or whatever it may be takes over in our head and we start making judgements that we shouldn’t make.
I’m trying really hard these days to be patient. It could be really easy to pick up a phone and chew on someone’s ear about how long I’ve had to wait. However when I really think about it all that really does is pull them away from the job they’re trying to do or from helping someone else. Instead I’m choosing to have patience and grace for the difficult job that health care professionals have.
It’s been a while since I was last able to update my site because I’ve been on vacation with my family! Tonight we pulled into Tacoma,Washington for the night on the final leg of our trip. So now that I have internet access I can update things. It’s been a great couple of weeks so far on our trek out the the coast to visit with my family. It’s been a great trip so far catching up with my family who I haven’t seen in two years. We’ve spent the last couple of weeks making stops in Vernon, Vancouver, and just left from a fantastic week at my moms cottage on Vancouver Island.
Today was a travel day and so we spent the day driving down island to Victoria to catch the ferry across into the U.S. We will now start working out way back home spending four days in Cour’Dalene, Idaho. It’s been a great way to put the pain out of my mind in some ways. The last few days though have been tough because I’ve been dealing with a fare amount of swelling along with a real increase in pain. Nothing was going to stop me though from making this trip because I’ve really been missing my family. The only way I wasn’t going to go was if I had received a call for surgery but that hasn’t happened yet! When we finally arrive home we’ll have been gone for almost three weeks a much needed change of pace in my mind.
Road trips are a lot of fun but by the end of today we were all tired and my pain was getting the better of me. I’m doing ok though and holding it together the best that I can! The traveling side of a trip is never easy for me but I find a way to push through and try to put a smile on my face. Some days are easier than others and today was one of those days. The temperature in these parts was really hot and the combination of that with my pain sent me over the edge tonight and so I’m doing my best to hold it together. Combined with some really tired kids and an especially tired wife and I’d say that we all need a really good nights sleep!
Over the next few days I’ll get to writing another post that gets a little more in depth about how life is going at the moment. For the time being however I need to get a little rest! Talk to you all soon.
Well it looks as though summer has finally arrived! The last week or two things have finally dried out a bit and the weather has finally turned hot. Now if we could only get rid of the mosquitoes that attack you when you step foot outside anywhere! The drier weather is good news after the sever flooding that our province has seen in the recent weeks.
So while the cottage is quite and the kids are at the farmers market this morning I thought I’d take a second to put together a post. I’m not moving very fast today because my pain level is up and I can just sense that it’s going to be one of those days where I fight to keep it all together. I’ve come to learn though through living with CRPS that you take the good days with the bad. Those bad days are the ones however that drive me to push even harder to beat CRPS. The more I push on the more I want to be that person who defies the odds and proves that my disability doesn’t have to control my life.
I’m reading a book at the moment on Mount Everest and there are references to two climbers who have made it to the summit with their disabilities. One had no legs and was fitted with special prosthetics that enabled him to climb and another had one arm and like the first was fitted with a special limb. There is always a way of turning a negative into a positive, you just have to figure out the way in which your going to do that. These people are living examples of the amazing feats that people with disabilities can still accomplish! Never let someone tell you that you can’t do great things with your life because you can!
Even though I spend most of my time trying to manage pain and keep myself comfortable, I never stop believing that I’ll go on to do amazing things in Gods timing. It’s taken eight years and a lot of baby steps to get to this point but I know I’ve come a long way. I work hard to gain just an ounce of ground on a disease that a lot of people say can’t be beat. I’m not going to be the person who sits back and watches on the sidelines and if that means kicking and scratching to gain every step forward then that’s what it will take.
My point is this! Somewhere inside you have a gift that can lead you down the road to do great things! It might even involve having a whole bunch of baby steps to take but don’t let anyone tell you can’t because you can!
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!