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!
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.
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 been a pretty great week in my neck of the woods! All last week our fine city hosted Grey Cup 2013 with the big game being played last night! I can now say that our city is truly alive with celebration because the Riders brought home the cup last night, making history in the process by winning in front of the home crowd! Car horns and cheering could be heard well into the wee hours of the morning as fans celebrated the victory. This city and province are so proud of them and congratulate them on such a great season!
The month of November is CRPS awareness month and so I always put up a post that brings attention to this. I’d normally put something up at the beginning of the month but for whatever reason I didn’t and so your getting it now. Ok so I forgot about it!
Since being diagnosed I have always been passionate about creating awareness when it comes to this illness. A common question that people ask me is how many people have CRPS? That’s not an easy question to answer because in some places studies haven’t been done to determine the numbers. In Holland a study was done based on 800,000 patients determining that 1 in 4000 were diagnosed with this illness. In England a study shows that 1 in 2000 live with CRPS. I was unable to find any numbers for Canada and the U.S. but was able to find that in the U.S. 50% of all cases go undiagnosed. When I last checked on any studies being done in Canada there was one being conducted in 2012 to try and pull together the number of people living with CRPS.
If you read my blog on a regular basis then some of this information I’ll be posting will be old news. My goal however with today’s post is to educate those of you out there that have little or no background with what CRPS is. CRPS is a multi-system syndrome with diverse symptoms characterized by chronic pain. It affects the immune system, central nervous system (brain and spinal cord), and the vascular system ( hot/cold). It is more commonly found in women( between the ages of 40 and 60) more so than men. As well children and teenagers are also found to be affected.
The pain that one feels with CRPS is a burning, stabbing, and shooting type of pain. It is considered to be one if not the most painful long term condition there is. On the McGill Pain Index it scores a 42 out of a possible 50, above both childbirth and amputation.
The chart above gives you a visual of the type of pain that someone living with CRPS has to deal with. With pain as intense as this it is key that it be diagnosed as quickly as possible. Often however the pain goes misdiagnosed, diagnosed too late, or the patient is told that everything is all in their head. Although we don’t have an accurate number of how many people live with CRPS between 80 and 120 million people live with some form of chronic pain. CRPS is a very real illness that causes suffering that you can’t begin to understand unless your living it! So the next time you come across someone living with chronic pain please don’t tell them it’s all in their head. Chances are pretty good that it isn’t and that the pain is very real.
Over the last couple of weeks things have been crazy busy! Doctors appointments and kids sports and just life in general has left little time for my wife and I just to spend time alone. So this week I planned a date night and took my beautiful wife out for dinner and even managed to get rid of the kids for a night! Only one thing stood in the way of the great plans we had. She came down with a cold during the day! We had a great dinner but by the time we got home she wasn’t feeling so hot and just needed to get some sleep. I can hardly wait for Hawaii when we get many days and hours alone together!
The last week or two have been a challenge for me to get through from a pain standpoint as well as mentally. I went to visit the staff at the implant clinic for some reprogramming of my stimulators, to see if we could fix the problems with the coverage in my upper implant for my hand. At this point things aren’t looking so great and it’s looking like I might have to go in for another surgery to place a new lead. No decision has been made at this point but I have a feeling I already know what direction this is heading. Like always though I hold my head up and keep moving forward. Why do things always have to go sideways all the time? Don’t know and don’t care! I’m a firm believer that I’m going through all of this for a reason, and that at the end of all of this everything will finally make sense.
As has been the case so often while writing my post it’s been a few days in the making to put this all together. Over the last few days there’s been a lot going through my mind and it’s taken away from writing my blog. As I mentioned before I’ve been working with the implant clinic here in my city to try and fix the problems with my upper implant. The bad news is that it looks like surgery is once again in the mix! We’ve done as much as we can to try and change the coverage of the stimulator with programming and now it looks as if a new wire and lead have to be placed in my spine.
You’d think with all the problems that I’ve had with this upper implant that I’d just give up on it and say enough already, but I don’t give up when I face a fight. Even though it’s effectiveness hasn’t been 100% I still believe that it’s helping and giving me relief. So I’ll go through whatever I have to in order to keep moving forward. So as I wait to meet with my new surgeon and get put on the surgery wait list I’ll busy myself with distraction in various ways. As a matter of fact if it wasn’t busy enough with life in general I’m working on a few photography projects for clients just to add to the craziness!
So I guess I’d better hurry up and post this so that it doesn’t get put off any longer. Over the next few weeks I’ll be making a few changes to this site to give it a bit of a freshen up. It’s been a while since I did that so I’ll be doing that and adding a few other things. So I’d talk to you all soon.
Once again I have failed to keep this blog updated on a regular basis. Things have been crazy busy however and there has been little or no time to do everything that has to get done. It doesn’t help that I’m not feeling all that good at the moment. I’m most definitely doing more than I should but what choice do I have! I’m not made of money and so I can’t hire everything out and have to try and do some of the things myself. The good news is that we are really close to being done and once again have a working bathroom with the rest of the basement not far behind! Having gone with only one washroom for about the last nine months has been interesting to say the least!
If we aren’t dealing with our house then it’s been dealing with kids and their activities outside school. Somehow I’ve been able to manage to check my pain and keep pushing on. Some days I surprise myself by how I keep going, never giving up and always giving as much as I can in spite of a nasty illness. Today I saw that same fight and will to never give up in my oldest daughter. We were at her cross-country meet and as a parent it was one of those days where your both proud and sad for your child. As each age group entered off the course and came into the track we kept our eyes peeled for our daughter. When we finally saw her we cheered her on as any proud parent would but knew something wasn’t right. She had a look of pain on her face and looked upset.
When the race ended we discovered that twice she had fallen to the ground and been stepped on by other runners. One of those times she had been pushed to the ground by two girls! My girl got up though and pushed herself to finish the race even though she was hurting. She could have made the choice to give up and not finish, yet she was determined to give her all. Nothing can make you prouder as a dad! It was a quite evening with a heartbroken girl but at the end of the night I tucked her in and told her how proud I was of her that she kept going.
Seeing her today gave me perspective into this illness called CRPS and how you have to face each day. No matter what you finish running the race. It doesn’t matter if you walk or run but you do everything in your power to cross that line at the end. In our world of CRPS that might mean two years or it could even be twenty but the most important is that you keep going. It’s been busy over the last six months and I’m tired of all the extra pain that I’ve had to deal with. Several times I’ve had to pick myself up and brush off the dirt but I keep running.
Seeing my girl finish that race today encourages me to keep going and face any type of adversity that comes my way. Lately there have been lots of days where its been tough to make it through the day from start to finish. Seeing my girl today has renewed the fight in me to find another gear to keep up the fight.
The last couple of days things have been getting a little bit better. I’m still having a tough time getting over the surgery but it’s baby steps every day. I feel beat up and tired most of the time and I’m just trying to push through all of it. It’s like I’ve been running the iron man marathon and I’m longing to get to the finish line. It doesn’t help that I’ve also had two major surgeries in about three months. My body has had enough and it’s in need of healing! Like a Timex watch however I’ll keep ticking and nothing can stop me!
My goal today is to finish this post because it’s already been two days in the making and I just have to get this done. The past couple of days has been kind of crazy because work is finally being done to try and complete our basement. It’s been four months with no basement and do I ever miss it! The truck came in yesterday to pour the floor, and sometime in the next week hopefully the building will start after the concrete has had a few days to set. Over the last couple of days as things melt I’ve also felt the need to get into the garage and do a little spring cleaning, but most of that will have to wait until I feel more up to it.
As spring for most parts of our country is in full swing we are just getting rid of all our snow, and I can hardly wait to get out and start shooting pictures. It’s been a really rough winter in our parts and I’d be lying if I said I wasn’t going a little stir crazy from being inside so much. Things are now starting to melt quickly but winter made yet another appearance on Monday bringing with it 5 – 10 cm of snow. It did melt rather quickly which was nice. The biggest concern at this point in time is the concern over flooding. The watershed authority has forecast our city right in the middle of where some of the worst flooding is suppose to occur. Up until yesterday things looked to be in pretty good shape but over night the sandbags have gone up in the areas of concern and the water is rising in areas. We’ll see over the next few days how things turn out.
Today I wanted post about something that bothers me when it comes to dealing with my disability. It has to do with the issue of handicap parking. I’ve posted about this once before but the comment I got from someone the other day really annoyed me and I felt the need to post about it again. As I parked in a handicap spot the other day a person came up to me and said “you don’t need handicap parking your just abusing its real purpose”. His comments took me by surprise and I thought it was kind of obvious by looking at me that I had a disability. It took every ounce of energy from within and a whole lot of grace not to lose it! I felt like educating him with a few words of wisdom of what I’ve been dealing with over the last seven years. Having to walk the extra distance from the back of a parking makes a big difference in my pain. If I can shorten the distance I walk then I last for a longer period of time. I have problems with my walking and the last time I checked that was one of the reasons we have handicapped parking at stores. Or maybe for the person “like me” who only has the use of one hand and has trouble carrying and loading his groceries!
Once again I was forced to defend my disability which has so often been the case over the years. This person doesn’t know me and yet feels the need to be my doctor and diagnose my illness. These types of judgements happen way to often and make the people dealing with their disability feel bad. Those of us with disabilities didn’t choose for these things to happen to us and are coping the best we can, and people passing judgement only makes things worse. I briefly informed him that I had every right to be parked where I was.
So that’s my rant for today! Sorry but I think the occasional rant is ok. It’s the reality of what I face on a day to day basis and think it’s important to share. I usually write posts that are positive but this is just one of those times where I need to bring across some of the negative things I face in dealing with all of this. Have a great weekend!
Things are looking up because it looks like spring has finally arrived! The snow is finally melting and it looks like I can finally stop wearing my winter jacket. I shouldn’t say that though because who knows what our weather will do these days. They are after all forecasting snow again on Monday! Hopefully it won’t stick around. It’s good just to be able to get outside for a change. It won’t be long before all the yard work begins and judging by what lays beneath all that snow it looks like there’s a lot of work to do. That will all have to be put on hold though until I heal from my surgery.
This weekend the kids have gone to be with their aunt for the weekend, a much needed break for my wife and I. Last night was date night even though I’m not doing very much. I wanted to go out for dinner but seeing as I’m still having trouble sitting for very long we ordered dinner in and had a quite dinner and evening together. It’s great just getting time together with no kids to worry about, as I’m still spending a fare amount of time laying down and taking things easy.
The pain is still pretty intense at times in my shoulder and clavicle area. The areas they opened in my back are feeling a bit better ever day, and so slowly things are on the mend. It’s been a really long two weeks and the recovery process has been a lot harder than I’d like but the surgeon is saying that everything is looking good. The plan for now is just to monitor things to make sure we caught the infection, as well as do a few other tests. Next week I’ll also go in to the implant clinic, and we’ll try and fine tune the implant for my upper limb. We will also do an x-ray to see if the lead in the upper implant has shifted at all.
When I woke from the surgery and the unit was turned on I started feeling the stimulation down my right arm instead of my left. Immediately I started thinking here we go again! In case you didn’t know this happened once before. My mind started thinking about having more surgery to reposition the lead but everything has worked out, and they were able to program it so that the sensations are being felt where I need them the most. We still however want to check and see if anything has moved. At the same time they will spend some more time adjusting the unit so that it gives me the most effective pain relief possible. There is a lot of going back and forth between the hospital and home at the moment. Sometimes I just don’t know what to think when you pass hospital staff and they know you by name!
Even though this surgery has been one of the harder ones, I’m happy with the overall results. I didn’t think that putting the battery in my clavicle was going to be comfortable but once the surgical pain is gone I’m sure it will be fine. With next to no fat in that area, I was sure the battery would really stick out and be uncomfortable. I was all prepared to have a large lump sticking out because of the battery but my surgeon did an excellent job and you hardly notice it at all. Not that it really matters because all that’s really important is that it helps with a persons pain relief.
The timing of all of this wasn’t great because there is so much going on around here. Hopefully this week the construction company will start work on our basement, and there is the usual spring cleaning that needs to take place around the house. At the moment though lots of rest is what the doctor wants to allow my body to heal. For those of us dealing with CRPS, healing after a surgery is always takes so much longer. So not pushing myself right now is what’s in order.
The past 72hrs has been challenging to say the least! Several trips back to see the surgeon and the staff at the implant clinic haven’t yielded a lot of answers. If you hadn’t read my last post you may not have known that I had my surgery to remove and relocate the second of my two implants. It now sits under my left clavicle and I’m happy with where it is, with any luck it will work out better in this location. During the surgery we ran into some problems and found out that the site had become infected, and we are trying to understand if it might be related to the last infection that I had.
Everything was cleaned out during the surgery and I’ve been put on antibiotics and will undergo further tests next week. We are hopeful that the treatment will work but it’s a watch and wait type thing. The surgeon will run some tests to make sure that nothing has gone to the spinal cord as well. It’s one of those kinks that I didn’t need thrown into the mix but I guess it is what it is! The pain is super intense at the moment and I’m doing my best not to lose my mind. I’m on day four and hopefully in a day or two we’ll see more improvement. Yesterday I couldn’t understand why the pain was getting worse but after talking with the staff at the implant clinic things now make sense. I won’t go into detail but after talking to them about what was done during surgery, I have a better understanding of why all the extra pain.
My intentions were to finish this yesterday but that just didn’t happen. I’m having a really hard time at the moment dealing with all of this. Going into this surgery I thought I was prepared mentally but clearly I had that part wrong. I can deal with the physical pain but at times everything gets to be to much and I just want it all to be over! It’s also taking it’s toll right now on the rest of my family, with having to make lots of adjustments while I get better. Sometimes that can be harder to deal with than having to deal with recovery itself! It isn’t fare that my family has to be affected the way that they are. At times like this I get angry at the CRPS and the changes it’s caused in my families life. This family has stared adversity in the face before however, and like all those other times we will get through this one as well.
If anything all of this drives me more to beat this illness, and in order to do that I need to trust that God is going to help me do it. It’s been a rough week and my emotions are running on high! Have you ever had that dream where you need to take a breath but you just can’t. Over and over in the dream you gasp for air but you just can’t seem to get the breathe until you wake up. Well that’s kind of how I feel this week, I’m having trouble getting my breathe. Once I open my eyes and get that breathe I know everything will be ok. It’s just going to take a bit of grit and determination to get though all of this.
All of the feelings set aside the surgery itself is going to help improve things for me. I already know without a doubt that moving the battery to where it is now was the right decision. I have to admit I didn’t like the thought of where it was going to go. Sometimes I just need to listen and not question! Thanks for listening to my frustrations in today’s post, sometimes just laying it all out there helps.Well enough rambling for today and besides I need to rest up.
Hi everyone! Today’s post will be short and to the point, well the most part with a few spelling mistakes mixed in. Why do you as because last night I had my surgery and I have some really strong drugs coursing through my veins right now! The surgery went as well as can be expected. They removed my battery that I have in my back and put the new one around my left clavicle. What I wasn’t expecting was the fluid that he found in and around the battery sack. So my surgery was a little longer than expected and my surgeon has sent off samples for culture. He wants to see me in his office in two days to talk about the results.
I’m hoping and praying that this doesn’t mean more surgery. However that does remain a possibility and this point in time. The pain at the moment is pretty intense as I have two incisions in my back and the one in my front. I’m trying to make my brain understand that it’s surgical pain so that the CRPS doesn’t flare up to much. I’ll update with more of the details later but over the next few days I’ll be busy recovering. Well for now I have to draw things to an end before I fall asleep!