Update on my CRPS!

Hi Again! Things are a little better this week as the pain isn't quite as intense as it was last week. The pain seems to be under better control than it was last week. I still wish that I could get better relief, however I'll take what I can get at this point in time. Although with the way that my kids are fighting my stress level should be up in no time which should bring on the pain!! That's what I hate so much about CRPS and how stress affects it. Stress is a part of life so how do you avoid it? The answer is you don't!! However you can manage it.

Well last week I met with the neurosurgeon, and I have decided that I will go ahead and have the implant done. If you missed my earlier posts I had been talking about how my nerve blocks didn't work with the pain, and that I was going to consider getting the spinal implant done. I have really been struggling with this decision because there are so many good things and bad things to consider. It wasn't just something as simple as going ahead and saying yes. After sitting down with the doctor we decided that it was in my best interest to go ahead and have it done. So now I have the joy of sitting back and waiting for the next three months.

What made things more difficult for me to decide was that I have two limbs that are affected, so its a little bit of a more complicated procedure for the doctor to do. My procedure has to be done in two stages, the hand being the harder of the two to do. What the doctor suggested was that we start with doing the easier of the two which would mean doing my leg first. He suggested that we do the one first and see if it's going to help with the pain. He was suggesting that if it wasn't going to work then it wouldn't matter if it was my hand or ankle, so why subject my body to the tougher of the two procedures.

After meeting with the doctor I felt better with the way that he had decided to take on my procedure. He explained some of the concerns that I had, and made me feel better that I was making the right decision. I'm still not crazy about having something foreign in my body, however if it reduces the pain then it's worth it. The other thing that made me feel better about my decision was that if I really want to I can have the unit taken out if need be.

Like anything you need to do your research and see what the procedure is all about. After talking with my local implant clinic and seeing the unit, I felt a bit better about what it was all about. The people I spoke with at the clinic also helped with explaining things to me so that my understanding was better.

One of the hardest parts about making this decision was how comfortable I felt with the doctor that will be doing the procedure. It can be so hard to read some specialists however mine comes very highly recommended. If there was ever a neurosurgeon I wanted doing this it would be him. Let's just say that you can't go on bedside manner!!In the end you have to look at how highly regarded he is, and he is at an international level.

So overall I am happy to be moving forward and have faith that this is the right decision to be making. I trust that this is in God's hands and that He will take care of me.

Who Encourages You?

Well here I am for another post, and how things can change quickly!! Over the last couple of days I've been experiencing pain that has been off the charts. The other night it took everything inside of me to keep up the fight. Just when you think you've been through it all, the pain comes on even worse than the last time. When does it end!! You just have to do a lot of praying and ask God to take the pain away. There is no way to describe what you feel when your going through that much pain. Have you ever felt pain that drives you to the point where you want to throw up? Well I wasn't throwing up but I sure wanted to!!

I know that sometimes when I post it may seem like I do a great job handling the pain. Most of the time I try to do everything that I can to distract myself from it, and not let it beat me. I have my moments however where I don't handle it so well and just want to give up!! The other night was one of those nights where I had a real hard time dealing with the pain and just wanted this all to end. At moments like this it can be really hard for me to focus, and it can also be hard to maintain that positive attitude that most of the time I have. It's at times like these that I feel like the luckiest man on earth to have the wife that I do! It was when I couldn't, that my wife started to pray for God to take the pain away. To have that kind of support and encouragement from her is a gift from God.

I'm happy to say that those prayers have been answered, and the pain is a bit better than the other night. You can give me every reason for why my pain subsided over night however I know that it was an answer to prayer. It amazes me how quickly my pain can change. The hardest thing I find in dealing with my CRPS, are the emotional stresses that it puts on ones life. One day you might be feeling good and think that you are winning the battle. The next day your pain comes back and kicks you twice as hard, to try and beat you down. There's a constant game that goes on in your head that doesn't end. Your brain on one side is saying win the fight, and the other side keeps saying this is all to much to take. The people that surround you play an important role in keeping that fight going.

The other night was one of those nights where you have to dig to the very depths of your soul and pull out everything that you have to keep going. Sometimes it takes another person to encourage you or help you find that extra bit of fuel that you need to fight. As I was experiencing the intense pain, it was that encouraging word from my wife that helped me to find it within myself to get through this latest flare up. It's those small things that she does to keep encouraging me that help so much. She is a big part of this fight and for that I am ever so grateful.

Who's gives me the attitude that I have to fight this war? God! Who helps me get through periods of pain that test you until you can't take any more? God! Who keeps giving me the strength when I need it? God! Wo encourages us when we need to be lifted up because we don't have any more fight left in us? God! Who do you have in your life that encourages you to keep up your fight?

Rested And Ready To Fight My CRPS!!

Well I'm back from my holiday and am rested and ready for another day of battle against pain. I had a great time out in Vancouver where I was raised visiting my family and friends. It's amazing how taking a little bit of time for yourself and your family can make such a difference. Even though my pain levels have been going up over the last four or five days I still feel better. Just the simple fact that your not thinking about it all day long, or explaining it to someone is enough to make a difference.


During the holiday I was able to see and enjoy all the great things that I have in my life in spite of everything that is going on. Sometimes because we live with pain 24/7 it's easy for our minds to become clouded and focus on everything that we don't have, or can't do because of the pain. We can start to dwell on the negative if we aren't careful. I'm not saying that this is something we do on purpose, but we become tired of fighting the pain and that's when the negativity can set in.

It was great just being able to spend time, with those who are the most important to me. As I spent time with my kids, I could see in there eyes that it wasn't about what I can and can't do with them. It was about spending time with them and being there for them. I took my oldest girl to play mini golf on a day that I was feeling good. It was the highlight of the trip for her!! I can't describe how good that felt inside to know how big an impact that made with her. These are the things that are important to me. I might have physical challenges, however it doesn't have to put a stop to the full and rich life that I can live.

Having my child come up to me and tell me that I'm "the best dad ever", brings a smile to my face and makes my day. I'm really trying to see all the huge blessings that I have in my life, and use them to there fullest. It can be hard at times to see all those blessings though because of all the turmoil that we go through in dealing with our pain.

It was just nice for a change to be distracted enough to be able to spend so much time thinking about things other than the pain!!!

Time for a Holiday!!!

Hi Everybody! Well I'm back from a couple of days out at our cottage at the lake however I'm only back for a day. Tomorrow we head off for vacation for about ten days so during that time I won't be putting any new posts up. I would usually take my laptop with me and update from where I am going, however I won't be taking it with me this time. The next post you will see will be around the 14th of July when I get back.

This is a much needed vacation for the family, and gives us a real chance to unwind from everything that we go through on a daily basis. I'm hoping that it will be a distraction from all the pain, and that when I get back I will feel refreshed and ready to get back to the day to day. I'm really starting to feel as of late that a break from all the doctors appointments and just all the physio is really needed. It's time to have some laughs with my family and just enjoy hanging out with them.

My pain lately hasn't been good. More often than not I've been having bad days with my pain. It really seems to have gotten back to the same roller coaster of good days and bad days. It's certainly making me want to have the implant done tomorrow. I'm really hoping that when I get back from vacation I'll have made up my mind one way or the other. I can't really say one way or the other why my pain has gotten so bad again. The weather where I live has gotten quite hot and the heat to some degree makes things worse.

While I'm away I'm going to take the time to simply allow myself to forget that I'm in pain 24/7 if that is possible. I want to be able to come back refreshed with new topics to blog about, as well as be more motivated to keep up the fight. I would really like people to suggest some topics that you would like me to post about. Feel free to ask me your questions, or other topics that you'd like me to post on. For the time being however I will see you soon and check back for a new post after my holiday!!

How has CRPS affected your independance?

On my last post someone made a comment saying that letting go of your independence is a lot harder than coping with the pain sometimes. I would have to agree with that comment. It's almost like there's this grieving process that has to take place, and getting over that is a hard thing to do. It could be a matter of days, months, or even years. If I look at myself I'm already five years into this and I'm still not over losing certain aspects of my independence.

Another thing that the person mentioned in her comment was that it takes a whole lot of patience to get through that grieving process. This is so very true!! It can take next to nothing to set me off when it comes to my independence. It can be something so very simple that sets it off as well. Take for example in my case trying to do up buttons on a shirt. It's not that it's that big a deal, however it's something that I couldn't do and had to rely on other people to do. Now I've come a long way and in some cases can do them myself with one hand depending on the size of the button.

There are all kinds of things that we face on a day to day basis that affect our independence, and it's a real struggle to move forward and not let those things affect us in a negative way. If we aren't patient then we let those things eat away at us, and affect us in ways that we don't want them to. There isn't a day that goes by where I don't ask God to give me the patience that I need to get through each day.

If your like me, in many ways you've lost certain aspects of your independence. Over time though you learn various things that help you gain some of that back. So it doesn't have to be that you lose it for good. However what it does take is a whole lot of patience as you do learn those things!! This is where God comes in for me, because He helps me with get through the hard times when it all seems to be to much.

One thing that I know for sure with me is that it's a slow process, and that it's taking baby steps to get over some of the things that I need to get over. Learning to not let all the small things bother you and set you off can be hard. I would say that this is one of my real challenges that I face. There are lots of times that I just put on a brave face and say that everything is ok. The funny thing is that they are really small things that shouldn't matter all that much. However because they involve my independence they take on a different meaning. They become bigger issues than they really should.

It's a day by day process for me, and each day it gets a little easier to move forward from something that's so incredibly hard. Each time that one of those things sets me off I try to have a little more patience in dealing with it!!

Adjusting Within CRPS

Well as I sit here writing my new blog post I'm listening to the thunder, and watching the rain come down harder than I've seen before. Streets are turning into lakes and it's almost time to break out the canoes!!! It's a perfect time to stay inside and write a post.

I was thinking the other day about one of the things that I've had a hard time adjusting to when this all started happening to me. I was a very active person before, and I really enjoyed doing all the yard work and all the projects that needed doing around the house. All of a sudden I had to rely on others to do everything around the house. This has been a really hard adjustment, and even now I still have problems watching others do the work.

Not only was doing this work good exercise, but it was the sense of accomplishment that you would get after doing something that was so rewarding. I was also raised from an early age doing all the jobs around the house, so it's deeply ingrained in me to take part in doing all those things. Sitting back and watching others wasn't part of the plan.

When I was young I would spend time doing jobs around the house with my Dad. Doing all of these things was all part of your identity as a male. As my dad would always say it was doing man's work!! So to say that what was ingrained in me at an early age hasn't affected me would be lying. It just so happens that I also enjoyed doing this type of work so that factors in as well.

It just really bothers me that I have to sit back and watch things being done. For some strange reason I have a really hard time letting it go. If anyone can tell me why that is then let me know. I'm just not good at watching others break there backs when I should be in there doing my part. I contribute in other ways and so to some degree I've made adjustments, however I can only take so much sitting or laying on the couch.

I guess what I'm finding is that as time goes by I'm learning to let things go a little bit more. It isn't easy however the reality is that there are things that I can't do anymore and other people have to do those things. I'm starting to learn that I have to just accept that things are different, and that I have I can't do all the things that I'd like to do. Slowly it gets easier to accept!!! Like everything else however, you never get over it completely.

What I'm trying to do now is focus on what I can do. I'm looking at ways in which I can make the biggest impact with my contribution. I may not be able to contribute very much but I can play a part in how much my contribution helps others. I can still play an active roll in the things that need to get done, just in a different way. It's a matter of trying to wrap my brain around how things have changed, and turning them into something positive.

The Physical & Mental Fight of CRPS

I know it's been a while since my last post but since then I have become sick with a case of bronchitis which is the last thing that I need right now. It started as just a cold however refused to go away, finally I decided that I needed to see a doctor who has since put me on antibiotics. That being said yesterday was a bit better and hopefully I've turned the corner.

In my last post I was still very much at a standstill as to what I what I was going to do with regards to the spinal cord implant. I have since met with someone who works with the implant clinic in our city. I'm glad I took the time to meet with him because it clarified a lot of questions that I had, as well as validating some of the risks that I was concerned about. I got to look at the unit that they would implant and he explained the procedure to me. What I appreciated was that he was very honest to say that like everything else it may or may not work!!

What I quickly found out was that of the people who have had the implant done the pain sometimes returns after the initial reduction in pain. In other words I had a lot better understanding of the procedure and all the pros & cons of the implant. Did it make it any easier to decide? The answer to that was no. However I did decide that I would start the process and now I am on the waiting list. I can always cancel if I decide against it.

Like I've said from the start I'm going to put this in God's hands and trust that He will help me with my decision. For the moment I'm just concentrating on my physiotherapy after my nerve blocks. I do have increased movement in my foot however my pain levels continue to bounce around. I'm trying to stay focused on not letting the pain affect me. As I try to keep the focus away from the pain it does help to stabilize the pain, so that my flare ups aren't as bad.

In a couple of weeks time I'll be going on vacation to visit my family in Vancouver. This will be a great break from everything and will help me relax. I have had a lot of distractions of late that have helped take my mind off the pain. As a result my pain has been a little better. As always it's mind over matter!!

Hopefully when I come back I will come back refreshed and ready for the next fight. As I mentioned in my last post I've really been struggling as of late to decide what to do next. Where do you draw the line? It can be so hard to keep up the fight. It's just that the mental and physical drain from fighting all the time takes a lot out of a person. Not to mention how the pain itself takes a lot out of a person. I'd be lying if I didn't say that I'm tired right now and need a break from everything.

What I find difficult is that as I you find out about new treatments, it can be hard not to find yourself saying " maybe this is the treatment ". You try to focus on day to day living however you are always thinking forward as to what you can do to get rid of the pain. What I find is that it's like someone dangling a carrot in front of our nose. There's always that possibility that the next treatment method could work and reduce our pain!!! So why not try it right!! All I'm saying is that we need to slow ourselves down and not be so quick to think this. Is the treatment right for you? Really look at it and weigh all the pros and con's.

I find that when I slow down and try to face CRPS with more patience and less desperation that I have more energy to fight and that I make better decisions. Every now and then we need to step away from what we are facing day in and day out. Take some time for you!!