Hitting A Wall!

Who knew that a month after surgery I’d still feel like I was run over forwards and then again backwards by a Mack truck! Yes it’s been about four weeks since the surgery and there’s still a long way to go. The mental battle that I’ve had to face through all of this has been huge. On more than one occasion I’ve had to tell myself not to give in to fear, or any other distractions that I’ve come up against along my path to recovery. On Wed I faced yet another obstacle as I ended up heading into the ER because things took a turn for the worse. After not being able to get ahold of my neurosurgeon or my GP I was advised to head down to the hospital to get things checked out.

When I got to the hospital I knew I was in for a bit of a wait. Nothing unusual for a hospital ER right! The doctor came and did a few tests as they always do, and then ordered a few more things to be done and told me that it would be a few hours before we got the results back. So I did a little more waiting and grew a little more tired, before a nurse came and told me they were moving me to another part of the ER. I felt like I was being put in isolation with nobody around and nobody coming to check on me. Under normal circumstances this quiet place would have been great for a person with CRPS to wait. On this night however it was too quiet giving my mind to much of a chance to think, and all of a sudden the pot boiled over and everything just came crashing down on me. I couldn’t put on that brave face anymore, and the tears started to roll down my cheeks as all the stress started boiling over. Of course the timing was perfect because just then the doctor walked in and she could see the emotion all over my face. After talking to the doctor for a bit longer, not only could I hear it in her voice but I could see in her face that she could understand the pain I was in. I could see she really understood me!

There wasn’t much that the doctor could do for me to help me and although I left the hospital after a long night frustrated that nobody could help me, looking back not everything about the evening was negative. After the fog had cleared and by that I mean the frustration and everything that boiled over that night I was able to look at things in a much more calm and realistic manner. I needed that alone time for everything to come up to the surface. If you keep pushing everything down then it builds and builds leaving you like that earthquake or “the big one” waiting to happen. If that were to happen then everything around you would come crashing down around you crushing you in the process. Isn’t it better that we let off pressure every once in a while so that it doesn’t build and build until we can take no more.

As I sat in that room that night letting my frustrations come to the surface saying prayer after prayer I knew that there was a reason this was happening. I may not have realized it then but when I think about it all now it makes perfect sense. It was time for God to hear my thoughts, prayers, and all the frustrations that I needed to get off my chest. Once again when everything seems to be be getting to be too much, and just when I start to doubt that people are listening to what I’m saying He shows me that there is someone listening and that someone cares. In dealing with an illness where it can be hard to get people to listen, over and over He shows me that no matter where or when He will be there. As is the case with the team of people that have been put together to form the staff at the implant clinic. I really believe that God placed each one of them in their position for a reason.

Sometimes you just have to do a lot of sorting out of all the garbage! Ask yourself is everything in all of this bad or is there a lesson deep down beneath all that trash? Or quite simply do you just need to let it all out because God listens even when it may not seem like nobody else is!

 

 

 

November is CRPS Awarness Month

It’s Nov 1! What’s so special about today? Well it’s the start of CRPS Awareness month! So over the next thirty days you’ll be hearing a lot about the illness that has impacted my life so much over the last nine years.  Seeing as my site talks about CRPS on a routine basis, I had to try and think of how I could do my part in trying to raise awareness over the next month. So what your going to see on every post from today until the end of the month will be a fact about CRPS. So without delay here is today’s fact.

Fact #1    Many health care professionals and consumers are unaware of its signs and symptoms. Typically, people with CRPS report seeing an average of five physicians before being accurately diagnosed.

With my case it took about six different doctors and then a flight out to Vancouver to get my diagnosis. It took about a year and a half in total before I finally knew what I was dealing with, and before I could get any type of correct treatment plan put into place. At the least someone should have been able to tell me who to see or where to go. When nobody in the entire city is able to direct me as to where to go there’s a problem. Now I firmly believe that not every physician is going to have an answer to everything. Nor is it fare to expect that they are going to know every disease, illness, or medical mystery that’s out there. That’s where those of us who do have a diagnosis have a responsibility to step up and help educate, and I do believe that’s happening.

In the nine years since my diagnosis here in my city the physicians are getting better at recognizing the symptoms of CRPS however in other areas it’s very clear training is needed. While I was in hospital at the time of my implant surgery, over and over I had to educate the nurses on what CRPS was. I found myself explaining how my body reacts to pain numerous times, and the different symptoms that CRPS presents. It got frustrating because there were lots of times where their lack of knowledge stood in the way of them being able to treat me effectively. The first three days or four days were spent trying to get my pain under control because they didn’t truly understand what I needed in the way of medication. Or the simple fact that as a CRPS patient my medication needs to be kept to a strict schedule in order to best control my pain. During those first few days they struggled to help me with my pain. On day five along came one of the staff from the implant clinic that works with me. After she made a simple change to my meds things were better controlled.

A little education in those first few days would have made a big difference in the way that my treatment was carried out. I’m not upset with the nurses at all because they didn’t have any background with CRPS. There’s a real training opportunity there however in the way that CRPS patients are cared for. Those training opportunities are only going to happen however if those of us who are dealing with CRPS stand up and speak out. We need to give our feedback to the proper people and tell them that our care matters. So with all of this being said CRPS Awareness Month is a great chance to start educating! This month I challenge all my fellow bloggers and social media gurus with this. Every week post a fact on your blog or form of social media you use the most about CRPS. If you don’t blog or go on social media then tell a friend or colleague something about CRPS every week!

Lets use this month to make an impact!

 

One Wild Ride!

So here I am on a Monday afternoon trying to figure out what to write! I had three quarters of a post put together but then decided to shelf it for another time because I felt I needed to write about something else! I’ve really been having a hard time with my pain lately and surgery to fix my one implant couldn’t come sooner! I spoke with someone who does the scheduling for surgery and it looks like things might happen in the next two or three months. It’s been a really long wait but it finally looks like my time is coming near. It brings with it hope that my pain will be better controlled and that I can get my flare ups under control once again.

The last couple of days my pain has been hard to settle and the management side of things has been a daunting task. However it’s at times like these that I find a strength and fight that rises up in me refusing to give in to defeat. I sometimes hear this little voice in my head that says “you are strong” or  “don’t give in”. I firmly believe that in the times where my body and mind are weak that God is there to make me strong, encouraging me at the times I need it the most.

 Isaiah 40:28
The Lord is the everlasting God the creator of the ends of the earth. He will not grow tired or weary, and his understanding nobody can fathom. He gives strength to the weary and increases the power of the weak.
 

When your on a journey living a life with CRPS it can beat you up and tear you apart! I can speak to that because for the last eight years that’s exactly what it’s been trying to do. CRPS is this constant cycle that is relentless in nature that takes you on both a physical and mental roller coaster over and over until you can take no more. When your on a roller coaster it feels as though the carts your riding in are careening out of control going faster and faster. I like to use the reference of a roller coaster because it’s such a similar parallel. With a roller coaster your a body in the cart that’s along for a real wild ride. In some cases it’s the ride of your life! Well CRPS works in the same way with a little less fun attached to this ride! Your at the mercy of an illness that takes you on a ride that never seems to end, and can drive you to extremes. If you have God in the seat beside you through the crazy ride, then its a whole lot easier to handle.

I guess what I’m really trying to say is that at times when your scared God’s there! When you don’t know what’s around the next corner God’s there to help! When you feel like you just can’t handle any more of that ride because you’ve been battered and bruised God’s there to help you ride just a little bit longer. Anything is possible when you allow yourself the chance to come into relationship with God. That’s a big part of what has changed over time as I battle my CRPS. He’s strengthened my spirit and and continues to pour into my life in all the areas that I need His help, and because of that I’ve become a much stronger person.

So I leave you with this! Who is sitting in the seat next to you on your ride?

It’s CRPS Awareness Month!

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.

 

 

Pain Update!

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.