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.
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?