Have you ever been so discouraged that you just wanted to give up? Well that’s how I’m feeling at the moment. I’m now into week five of recovery and I’m not very far ahead. Last night we had a wedding to go to and I was going to get there if it killed me. Call me stubborn, hardheaded, or just plain mulish but I wanted to get out for a bit. Well kill me it almost did! We had planned out how this was going to all play out, and I was going to skip the ceremony because I have problems sitting for very long periods of time. The best thing we figured would be to go to the reception that way if I needed to leave I could. I made it for about an hour and a half before the pain got so intense that I couldn’t take it and had to head for home.
I’m frustrated at the moment because the doctors are saying that my body is just going through a rough healing process and that I just need more time. How much time exactly is that? I will be meeting with the surgeon this week to discuss things along with a few concerns I have. It feels like I’m not getting anywhere very fast and there are days where I just have to have a good cry. Yes you guessed it your getting one of those posts today! Never in my life did I think that I’d be pushed and challenged as much as I’m being at the moment. When your body is screaming with pain your brain is telling you one thing but God was right there telling me another. Over and over I’ve said I’m going to beat my CRPS and that will happen one day. I might be down today but tomorrow is a new day and the fight will resume.
Days like yesterday are hard because things with CRPS can spin out of control so fast. Adding surgery into the mix makes things a lot more volatile, and you never know what the outcome is going to be! So last night was one of those nights where the surgical pain combined with my CRPS caused my CRPS to spiral out of control. Its a fight that I’ve been going through since having the surgery, and one I know I can and will win. My winning spirit just wasn’t there last night however and I had to fight to stop the tears from flowing during the reception dinner. Times like these are difficult to battle through and all kinds of thoughts enter your head. My wife asked me tonight if I regret having the surgery and without hesitation I said “no”. Why? If I say “no” then I’m giving up on something that can be life changing, and take me in a very positive direction.
Am I feeling sad and frustrated at the moment? You better believe it! My emotions got the best of me as we drove home and I couldn’t hold it together. So I had a minor meltdown in the car and at home later. CRPS is a battle where every second of every day is consumed by pain. Sometimes it has to come out and show itself and if that means crying then get out the box of kleenex! I am thankful that I have a wife who understands me and knows how I’m feeling most of the time. I felt as though I’d spoiled the nights fun for the family. My wife then reasured me that in no way had I spoiled anything, which was just what I needed to hear.
For some reason over the last couple of years it seems as though I’ve faced more obsticles, and come up against more challenges than I have in a while. As I walk through each of these challeges, I always walk away feeling like I need to be more of an advocate for CRPS and chronic pain. Something is pushing me to go outside my comfort zone and I need to pursue it. So one way in which I’ll be doing that will be in making a few changes to my site. I mentioned this a while back and seeing as I can’t do a whole lot at the moment I have the time to make the changes. I’ll be introducing a few new links and blogs to my site and from time to time putting up a guest post. I’ve often talked about making these changes but never really got around to making them. Even though most of the content on this site will stay the same, there will be tweaks here and there to speak more towards CRPS and chronic pain! That’s it for today I just don’t have enough gas in the tank and I need to rest so talk to you all soon.
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!
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!
Last week was a pretty rough week with everything happening in our country and trying to recover from my surgery. As a country we try to move on together although that has been forever changed with the events of last week. Today though I want to give you an update on how I’m doing after the implant surgery and where I’m at with all of that. To say that things have been easy during this recovery would be a bold faced lie! I’ve had moments as I slowly get better where I ask myself how much more I have to put up with. This has by far been the hardest surgery to get over and I feel beaten up inside and out.
Its been about a week and a half since coming home from the hospital, and I still spend a fare amount of time flat on my back trying to get comfortable. Am I getting better? The answer is “yes” but I had expected things to be a bit quicker, and to be up and around a bit more than I am. The pain is the biggest problem but my energy level is down as well. I’m still dealing with a few symptoms that are affecting my right side. The fingers in my right hand are still numb and weak and my lips ( upper & lower ) on the right side are still numb. I’m being told that this is because of how extensive the surgery was, and that the nerves are all out of wack. The surgeon is saying this should normalize over time. We are watching this however just in case something else is going on. I’m really at the stage right now where I’m letting my body do the talking and not pushing things to hard. I knew that this part of things was going to be hard but never this hard.
As is always the case this has been difficult on the entire family. My wife has been more than amazing holding this entire family together! As with every surgery that I’ve been through she amazes me with how she does it all! She is a true gift from God! We started this journey together and we will finish it together no matter what gets thrown our way. My kids have had it tough as well through all this. No child should have to watch a parent suffer with an illness of any sort. This has been hard and upsetting to them but they see dad making improvements and that brings a smile to their face. My illness has affected their lives in a huge way and that makes me sad. Childhood has been a little different for them and I wish I could change that. After coming to see me at the hospital one day my youngest daughter was awake at 4am worried about “her daddy” and when I was going to come home. She should be asleep cozy in her bed having dreams about being a princess not worrying about my illness! These are the reasons I’m so passionate about helping others so they don’t have to go through what I’ve gone through.
After being through all of this however the implant is up an running and I’m happy to say working well. It’s going to be a bit before I can say how effective it will be because of all the surgical trauma that has my CRPS and nerves so flared up. As I’ve said before however I’m a strong advocate for the neurostimulators and the quality of life they can give you. I wouldn’t have gone through everything I’ve been through unless I didn’t believe in what they can do. No they don’t work in every case, and in some cases a person’s body rejects the implant. In most cases however they work well and when that’s the case they improve quality of life.
So for the next several weeks I will continue to make small steps to a full recovery. It’s going to take time and lots of patience but I know I can do it. Some days are bound to be harder than others but I trust that God’s going to pull me through this one as well!
This week has been really tough! Today I feel not only physical pain but the emotional pain is at an all time high. When I look at everything that’s going on in my little world dealing with chronic pain it’s nothing compared to what happened in our country yesterday. A gunman walked into Parliament Hill and changes the face of our countries history forever! My heart is sad for the soldier who lost his life yesterday serving and protecting our great nation! The acts that were carried out yesterday on Parliament Hill will forever be etched in my brain. We are a country that stands together unified and strong against these brutal acts of terrorism. As our Prime Minister said so well in addressing our country last night “But let there be no misunderstanding. We will never be intimidated. Canada will never be intimidated”.
The things that happened yesterday are a reminder that things have changed in the world as we know it. As Canadians however our beliefs and our values as a nation will never change! We are resilient and will find a new strength in the aftermath of this tragedy. We will have no fear! I am proud to be a Canadian and believe that in the days ahead we will only get stronger. Yes today is a sad day where the tragedy of the events that happened are fresh in our mind and are affecting our hearts but we must have an attitude that says we will never give in and be defeated. Like millions of other Canadians I’m still trying to process what happened and why it did, but know that in the days ahead our government leaders will try to figure out the answers to so many of the questions that we have.
When events like these happen it’s a harsh reminder that the problems that I have are so small in comparison. I have so much to be greatful for in this country that I live in. I have access to some of the best health care in the world but somehow I find a way to complain about it and that isn’t right. In other countries they have to fight for any type of health care at all. I need to be grateful for what my country has given me because it could be a lot different! You would think that by now I’d realize this but I seem to let my selfish wants and needs get in the way more often than not. Again I need to step back and take a look at the big picture. Something I need to do more often, not just at times like these!
When I really sit back and think about it, I really am blessed to be living in a country such as this. A country in which our soldiers like Cpl. Nathan Cirillo make the ultimate sacrifice for the freedom that I get to enjoy each and every day. Or the other law enforcements agencies across Canada that keep us safe. We thank you for the sacrifices that you make each day so that we stay safe.
To the Sergeant-at-Arms who stared fear down by putting his own life at risk in taking down the shooter and saving so many lives in the process we thank you! You truly are a hero!
When I started to write this post today it just didn’t feel right to post about anything other than this. Today our flags fly at half mast but we will get through this together as a nation!
Somehow I didn’t think that I was going to be writing a Thanksgiving message from my hospital bed but here I am. Surgery didn’t go at all the way I was expecting and so it’s been almost a week in hospital now. I want to go home! I’m feeling beaten up and in need of my own bed at this point in time. When that’s going to happen I really don’t know, the doctors are due to re-evaluate me today to see if I can manage the rest of recovery from home. I was only up a few times yesterday and I think they’d like to see me up a bit more often managing things a bit better on my own.
My surgery to replace the neuro stimulator took over 6 1/2 hrs in surgery when the process should have only taken about 1 1/2 hrs. They ran into a lot of problems trying to get the lead to go where it needed to go. They had a lot of surprises along the way and found a lot of adhesions that they had to cut through. Ultimately they had to remove two pieces of bone in the T1 & T2 area to try and get the lead in place but yet another surprise showed itself, a ring of scar tissue around the bone they partially removed. After all that however the success story was that they got two of the contacts in the lead into a place where they should never move giving perfect coverage to the limb needed.
Now comes the long hard mountain that needs to be climbed. If your considering an implant of a neuro stimulator you need to understand that there’s going to be a lot of pain when it comes to the recovery side of things. When the surgeon goes in to place the lead in your back, all of those nerves start getting upset and then your CRPS has a grand old time doing its thing, making your body scream with pain. There’s no way around it! If you have CRPS and you’re having a procedure done, there’s going to be extra pain and a whole lot of it! You can get through it though! While I’ve been here at the hospital I’ve been doing a lot of praying to get through this stage.
While I’ve been here at the hospital it’s been a real lesson in frustration trying to get the nurses and people providing my health care to understand the nature of the beast I’m dealing with. Over and over I’ve had to explain my condition and that the standard pain scale can’t be applied to a person with my condition. I thought that by being moved to a neuro ward that my chances may be better at getting the treatment plan that I needed for my pain but it’s become so evident that more education needs to take place. There seems to be a real disconnect understanding that CRPS patients already take high levels of pain killers. As a result this always effects how you as a CRPS patient are treated when it comes to getting anything extra for your pain relief.
As the day has progressed it’s become more and more evident that today won’t be the day I’m going home. It’s just been one of those days where emotionally I’m all over the place because I want to be home with my family!
Well by the time some of you have read this post I’ll have already had my surgery! After a very long wait I got the call yesterday to say that tomorrow is going to be the day. Nothing like getting right to it!!!! What you won’t get from me however is any form of complaint, I’ve been waiting for what seems like forever and now it’s go time. The reality has set in and now the nerves are kicking in. There’s a long road to recovery ahead but this is the start of that next step forward. I’m looking forward to putting the past year behind me and starting to move forward again.
Even though I’ve been through this surgery before I keep going over it in my head. I’m trying to keep my mind off it but that’s kind of hard seeing as this all happens tomorrow morning. At this time tomorrow I’ll be hopefully be getting more pain relief from the CRPS. Even though I have to get through all the surgical pain first! I’m looking forward to putting the long wait of last year behind me and starting to move forward again. I’ve had to go through a lot with these implants but I believe in them and that they work as a way to control pain. If I didn’t then I wouldn’t be going through all of this. When I look at the relief I was getting before the implant shifted in my neck it was all very worthwhile doing. It allowed me to get a quality of life that I was lacking!
What do they do during surgery to put in the implant? The surgery to put in a neurostimulator is done in two parts. The first is done while your awake, as you need to be able to tell them where your feeling the sensations of the stimulator when it’s turned on. So they start out by giving you some heavy duty drugs to make you go to your happy place! They then go in through your back and insert the wire that has the electrical lead that goes into your spine. The area they go in order to stimulate my left hand is in the area of C3 or C4 which is at the base of your neck. Once they get the lead into the perfThe ect spot through a series of tests and you telling them where you feel the sensations they move on to the internalization of the battery. This is the more evasive of the two parts and so it’s also the part where you get to sleep! It excites me because with my CRPS sleep is very broken, and so I know with the use of modern medicine I’ll get a nice sleep I don’t normally get!
The internalization is the part of the surgery that is pretty hard on a person’s body. They tunnel the wire from where it comes out of your spine to wherever you’ve chosen to have the battery placed. In my case the battery sits in my left clavicle so the wire has to get from the middle of my back to there. It’s a long ways to travel and I wouldn’t want to be awake for that. It’s always fun waking up to find ice packs placed in the middle of my back and in the region of my upper left chest to bring down the swelling. Yes! It’s a lot to go through but when thinking about the other options I have, it makes the decisions in deciding to go ahead with the surgery a whole lot easier in deciding.
Tomorrow the long road to recovery begins but so does a new chapter in this book! The hill I’m about to climb is very steep and takes a lot of mental toughness but the rewards will be great. In my case the stimulators work really well to even out a lot of the flare ups that one can get but I also understand that for some that they don’t work. I always tell people that if your considering one of these implants to give it a try because what other options are open to you?
For those of you who are Canadians I wish you all a Happy Thanksgiving! Yes this weekend we were suppose to be going to the lake to enjoy time with the family and an amazing meal. How that all changed with one phone call! Well it’s time to get a little shut eye before the big day tomorrow so I’ll talk to all of you soon.
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?
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.