Sunday, December 5, 2010

New Location!!

Hi Everybody! Well I've finally moved everything into place at my new site for my blog. From now on please come to my blog at From time to time I'll come by this site to let people know I've moved but I'll now be blogging on the other site. So make the move with me and start following me on google friend connect on my new site.

Tuesday, November 23, 2010

CRPS And The Family

Hello again! Well it seems to be getting busier as we start to get closer to Christmas.  I really like the Christmas season however it also brings on a lot of extra stress. That stress usually means increased pain however I'm not going to let that stop me from enjoying the season. This is one of my favorite times of the year.  The fact that the Christmas shopping is done for the most part is also great because now we don't have the added stress of what to get for anyone. My wife is great for being organized enough so that we get things done! If it was left to me I'd probably be shopping on Christmas Eve.

This is the best time of the year because we get to spend so much family time together. They really are the ones who keep me going through all this. I have such an amazing family, and am really blessed by the kids and wife that God has given me. As much as the kids drive me crazy, they are also the ones that who help me find the strength to keep going.  When your kids of  3 and 6 ask if they can pray for you to take away your pain, then you know that it's a gift from God. They might make me crazy at times however I wouldn't trade them for the world.

Today is one of those days where they could very easily drive me up the wall. I'm having one of those days where it would take next to nothing to crawl out of my skin. My kids can trigger things to get worse when I'm having a bad day. What's really hard though is trying not to let the pain affect my relationship with them. Often I can be short with them when really it's the pain causing me to act that way. There isn't a day that I don't ask for grace from God in dealing with my kids. I want my kids to grow up having a childhood filled with fun, laughter, and love. Sometimes though it can be really difficult not letting the CRPS/RSD affect them as well. You can't tell me that it doesn't affect them because it does. There are lots of times where they can't act  like kids do because of dad's condition. Instead at times they have to walk on eggshells because Dad is in pain, and it can be a real challenge to get around that.

Sometimes it can be really hard as I deal with this to watch all the people around me and how this disease affects their lives. However I really believe that God is working among everyone to help everyone with their specific needs. My attitude is that I will win this fight, just like David brought down Goliath. You take on each challenge that you face as it comes at you. Don't let obstacles stop you from getting past them, because there is always a way to get past. As a family this is what we do, we  adapt to the circumstances and get it done! First and foremost though God is helping me walk through this one step at a time. He gives me the mental attitude that I need day in day out.

In January my wife and I will be heading away for some much needed time alone. We will be heading to Hawaii to relax and forget about all the pressures that we face. No kids! Quiet time alone! Time with the love of my life! It doesn't get any better than that! Again this is something that you need as a couple to recharge and spend time with each other. Along with that however its a chance to have some fun. We need to focus on things other than the pain. There is this tremendous mental game going on with CRPS/RSD, so I've decided with Gods help to stare adversity in the face!!

Tuesday, November 16, 2010

Diet And Your CRPS!!

So how is everybody doing today? I'm having one of those days where I'm trying to ignore the pain yet it isn't working. Every time I try to distract myself from the pain it flares up a bit more and makes things worse. It doesn't help that at one of my doctors appointments today, I received a nerve block for recurring pain that I've been getting in my abdomen stemming from another problem. It's suppose to help take the pain away! Not make it worse! At the moment I'm feeling quite a bit of discomfort and it's making it hard to keep my mind off the pain.

Things have been getting a little more difficult over the last couple of days, as I try to deal with the stress of two kids and a wife recovering from a hysterectomy. I'd be lying if I said it wasn't affecting my pain level!! All things considered however the pain level is ok.  I'm still waiting for news on when they are going to do my spinal implant, however it could be this month or three months down the road. I've already been on the wait list for five months so I'm trying to be patient. I keep telling myself it will be worth it in the end if I can reduce my pain by 50%.

I'm trying to think of all the things I'd like to be able to do again if the spinal cord implant works. It would be great if I'm able to increase my exercise from what it is now, which is practically nothing. That alone would be something great. If I'm able to get more active then maybe I just won't get sick quite as much.  At the moment yet again I'm fighting off bronchitis. It's the second time I've had it in under 6 months!! Having a lowered immune system because of the CRPS/RSD certainly makes it a challenge when flu and cold season hits. It's usually next to impossible not to catch something that the kids bring home from school or get from their friends. So if you're newly diagnosed with CRPS/RSD then this is something that your going to watch. Make sure that you're doing as much as you can to stay healthy.

 One of the things I've done to try and keep myself healthy is change my diet and eating habbits a little bit. I generally eat a pretty healthy diet  and because of that, have managed to lose  4lbs in the last little while just by changing my eating. It's really only been a matter of fine tuning my eating and it's helped a little weight come off. It was also making sure that I control my portions. Knowing that I can't be as active as I'd like, I have to account for that and so you do that odviously by controlling the quantity that I eat. I don't often go back for seconds anymore.  As well as eating better I take certain supplements that my body needs. In my case there are a couple things that I need to take. I have osteopenia in my hand, or bone loss because I can't use my hand. So to fight that I take vitamin D, and calcium daily in order to try and slow down the bone loss. At least by eating a pretty healthy diet, I give my immune system a pretty descent chance at functioning at the best level that it can.

It's so important for us to keep our bodies as healthy as we can as we go through this. If you think about it it gives you the best chance at minimizing some of the symptoms that we suffer from. Just the amount of medication that I take is reason enough to try and stay as healthy as I can. Eating well gives me the chance to reduce some of the symptoms that the medications can cause. I'm not going to lie and say that it's easy to watch your eating. I'm not perfect and at times have trouble with staying on track, however I do feel better doing it. I find the days where my pain is really bad to be the hardest. You don't always want to eat because of the pain, yet if you don't then your body isn't going to be in the shape it needs to be to fight this.

There are certain things that we can do to fight everything that our bodies are going through as we deal with CRPS/RSD. Eating right and giving our bodies the nutrients that it needs is one of those things. It isn't just that I want to tell you to eat right, it's that I've noticed a difference in how I feel. Even from the standpoint of being able to say that eating well gives us the energy our bodies need to keep up the fight.

It's time that I try to get some sleep! As of late I've really been having a bad time trying to sleep at night. Sleep hasn't been easy at the best of times with my CRPS. However lately with my increase in pain I've been having an even harder time when it comes to sleep. I roll over into a position that puts pressure on my affected hand or foot, and you have to peel me off the roof!! The burning sensation of my limbs has also been worse at night for some strange reason. I just keep praying every day that I wake up one morning and the pain will be gone. Anyway until the next time I say goodnight!

Thursday, November 11, 2010

Fighting CRPS/RSD

Well today is a great day! I feel as though a huge weight has been lifted off my shoulders. As I have been writing in previous posts, my wife has been dealing with her own health issue. Today I can tell you that everything has worked out well, and all she has to do now is recover from her surgery. It just allows a huge amount of stress within our family to fall off our shoulders. I'm excited by this because hopefully it's going to reduce my pain level along with it. So now I can concentrate on what I set out to do on this site. I have to admit that it hasn't been easy to write because my mind has been elsewhere. Through everything that has been going on our family and friends have been amazing and I thank them for everything that they have done.

So as I had mentioned in a previous post it's CRPS/RSD Awareness month. Are you doing your part to raise awareness? Later this month the 30th to be exact I'll be doing a radio show to try to raise more awareness, as well I'll hopefully be doing another friends radio show. I'm hearing about some great things that are happening to raise awareness. On one of the sites that I often go to they are making a quilt that is drawing attention from the media. It's people doing things like this that help our cause.

I just feel that any chance that we get to talk to people, or bring light to our condition is an opportunity that you can't let go by. Bit by bit we can really make a difference. I know it seems impossible however I really believe that we can make a difference. Instead of getting mad at the doctor that doesn't know anything about your condition maybe you can work with him or her to educate them. I just heard about a doctor that has written a book on teens that are living with CRPS/RSD, so I'm tracking down the book and trying to get it into my therapists hands. It's doing little things like this that are going to raise awareness, and help the people that need the information get it. I can hardly wait for the day that I start hearing stories of people getting better!!

Through all of this God has changed me and has given me this intense desire to see peoples lives changed. I don't want to see people suffer anymore. Not only do I want to see others lives changed but I want to see my life changed, and God is guiding me through that change. Over the last little while I've been experiencing change. As I wake up each morning instead of wanting to give up and give in to the pain, I wake up and tell myself how can I beat this. As days go by God is slowly revealing those answers.

As you know I am working on moving this site. I am wanting to incorporate some good books on CRPS/RSD that people can get good information from. If you have any books or authors please leave me a comment. I would really appreciate it if I could receive some help with that. So until then I'll talk to you soon!!

Thursday, November 4, 2010

I Hate Spam!!

Hi Everyone! I wanted to post about something different today. I wanted to post about the people that think it's funny to place spam within peoples sites! I can't stand people that think that this is funny or fun to do to people! I've recently found a couple of comments that people tried to place in my blog that were in fact spam. I've now gotten rid of those comments and I believe everything is ok. If you read my blog though and you recieve any type of spam could you please let me know so that I can deal with it. I need to know what the spam is saying so that I can try to track the source. Like I say however I believe I've delt with it.

It's beyond me how people can see this as being fun to do to people. I'm trying to help others and share my story with people and other people have to step in and cause grief!! Sorry to anyone that may have been spammed. I'm working on getting my new site up and running and it has two spam filters that will hopefully catch anyone trying to do this to my site. If your reading this and your one of the people that put spam in my comments I'll say this to you. You are not welcome on my site and I will be reporting you to the proper authorities if I catch you playing with my site.

Now that I've said what I have I'll get to what I was going to post about today. The new site is coming along and I'm hoping that I'll be blogging on it very soon. I'm really hoping that any of you that read my blog on a regular basis will follow me over to that site. I've got the google friend connect up so I need you to go to that site and do the same thing as on this site. I need you to go to and click on join this site and then you'll be following on my new site as well. This is exciting because I really feel like I'm going to be able to make this site my own and add a lot to it that I wasn't able to put on this one.

One of the things that I'm hoping to incorporate into the site is a list of resources that you will be able to draw from. I've listed links to sites however I want to list different reading materials and various retail items that are available to you, in order to assist people in various ways. I do have to cut today's post a little short however I'll see you again real soon.

Monday, November 1, 2010

CRPS/RSD Awareness Month!!

Hi Everyone! Just wanted to let everyone know if you didn't already know that November is CRPS/RSD Awareness month!! Take a minute out of your day to tell someone about it! If you are someone who suffers from CRPS/RSD then make it a goal of yours this month to raise as much awareness as you can. We want to see change and a cure, so the only way to do that is to step up and become a voice for CRPS/RSD. Let's make people see what this is really all about!!

Sunday, October 31, 2010

Taking The Next Step With CRPS!

Well it's Halloween and as always it's that time of the year that my kids get to be on a sugar rush for the next several weeks!!  I haven't been having the best of days today, as my pain has taken over my body for the day. For most of the day today I've been fighting with pain levels and generally just trying to block out the pain that my body shouldn't be feeling. It's at times like today that I sit at home waiting for the phone to ring, telling me that I have a surgery date. Within the next couple of months that should happen. I've been told that it could even be as soon as this month that I get the call. I almost hope however that the call will be next month. Not because I don't want the surgery but because my wife is scheduled for her surgery next week. I couldn't imagine both of us going for surgery at the same time.

In case you didn't know in previous posts I had mentioned that I had decided to go ahead with a spinal implant, to try to reduce to pain levels. It took me a while to make the decision however now that it's been made I know that it's the right one. It took a lot of research as well as praying, to know that this was the right thing to do. It can be so easy when dealing with something like this to get desperate and make choices that aren't right at times like these. Who can blame us however because all you want to be doing is living a life as pain free as possible. Every day I see people rushing into making choices, and in a lot of cases you can tell that it's just out of desperation.

Here in Canada there aren't  lot of options for treatment. However the one treatment that is available to people who suffer from CRPS is the spinal implant. You can go ahead and get nerve blocks however for me they didn't seem to have much of an effect on reducing the pain. There was an initial reduction in pain for about the first day then the pain seemed to return. I did see an increase in ankle movement however that now seems to have flat lined and the pain seems to have been getting worse over the last couple of months. After the nerve blocks failed I started looking towards the implant. I was put in touch with Dr. K. Kumar who is a very well respected Neurosurgeon here in Canada. With most of the treatments being in the U.S. it seemed only logical to make seeing him the next logical choice.

After seeing Dr. K.Kumar my brain was swimming with information, and I had all kinds of trouble with trying to process everything he had told me. Part of me was saying that I needed to go for the implant and the other half of me said no way! My brain was saying do you really want to put yourself through this only to have another thing fail. At the same time I was trying to weigh the risks, and were they really worth it to me. At the same time on the positive side it could reduce my pain by 50% if it works. It could also help me manage the pain better. In the back of my head I was also asking myself if this was the right treatment, because there were just as many cons to go with the pros. So I went back to see Dr. K. Kumar again to ask more questions. I walked away feeling good about what he told me, and I told myself I'd made my decision.

What I had to take into consideration was the fact that 25yrs experience in Neurosurgery says something. It says experience! Also able to give me good solid facts both good and bad about the results people see, as well as the risks to those who undergo the surgery. I had to trust the information that I was being given, and make a decision. I started to pray about it and just trusted that God would help me make the right choice. So what words of wisdom might I have for anyone? When your looking at the different treatments that are available don't make a desperate decision just because your pain is bad and you want it to stop. Think about how it may affect you in the long run both good and bad. Make an educated decision and don't let others make the decision for you. Most important however ask God to help you make the decisions you need to make.

Monday, October 25, 2010

Understanding CRPS!

If it's not bad enough that I deal with my pain on a daily basis, today I'm dealing with a case of the stomach flu or something like that. The rest of the family has colds so this isn't a very healthy house right now. It's gotten to the point now that I just have to laugh! One thing after another! Well I'm moving along with getting my new site up and running, and I look forward to any of you that read my blog to move along with me when I do. This is really all a part of me making a site that will let me do more. It will allow me to incorporate more features into my site, so that I can get more info out to people that are living with CRPS. As well as info to those who don't know about it. I hope to add more links to sites that are both personal and medical sites, that give info about different aspects of CRPS. If anyone has some great sites that you would like to see incorporated send me the links so I can take a look.

As lots of you have been reading in different posts, I've been dealing with all kinds of stress in recent weeks. This of course has made the pain even worse. I stay optimistic that this will change and that things will get better. This is all part of this nasty thing that we call CRPS/RSD. It's just one of those times where there's a storm going on an you have to do your best to stay afloat!! I've got my life vest on and I'm keeping my head above water. I try to deal with all the different aspects of the storm as best I can. Knowing that I'm going to come out on the winning side of things.

When people think about CRPS they often think that all we deal with is pain. What people don't understand are all the other ways in which we are affected. When you take the time to listen to someone who knows about CRPS then you start understanding that it affects a person in so many more different ways than just physical pain. This is the nervous system that we are dealing with! What I'm trying to say is that you look at the nervous system and all it controls. If CRPS/RSD affects this system then there are a whole host of issues that start. Have you wondered why we get sick more frequently than others? It's because your immune system has been affected. There are lots of other ways in which our nervous system is affected, to many to get into. I would encourage you to talk to a medical professional about that though.

My point is that you can't just look at the pain side of things. You need to look at the entire package and if you do, then you start to understand a lot of what's going on within our bodies. If you do this then you can start to more efficiently deal with some of the flares that you suffer from. Armed with this info you can come up with a better plan for how to manage your CRPS. Does it mean that all the symptoms go away? No it doesn't however there are a lot of times that you can make things better.

I'm just trying to point out that CRPS affects us in so many more ways than what people think. So when we are having a bad day it isn't just pain that might be affecting us. Often a bad day for me is my brain being very clouded so it's hard for me to think, or even focus on doing simple tasks that might seem easy to others. People often say that it's the medication that makes you that way. OK! To a point the medication plays a factor! If you do the research then you'll see that CRPS itself is responsible for some of those things as well. I really want people to see that there is more behind the pain!

So you can see how this affects those people who go into their doctor and are looking for a diagnosis. If a doctor doesn't know anything about CRPS/RSD then often the patient is told that the pain will go away, or simply that they don't know the root of our pain is coming from. If the doctors where armed with some of this information then it would aid them in making a diagnosis. Pain might be the one symptom that we suffer from the most, however it isn't the root of what's causing everything! This is what I myself am so interested in. Why is my brain acting the way that it is? What is going on behind the scenes that is causing everything to be so messed up? If only people knew the half of what I have not only experienced but have learnt since being diagnosed!

So I say this to those of you who don't know what CRPS/RSD is. Challenge yourself to learn more about this disease. You might begin to understand what it's all about, and why from one day to the next things can be so different. It's about bringing this disease forward and seeing it for what it really is!! It's about making more funding available so that more research can be done to find a cure.

Thursday, October 21, 2010

Lost In The Storm!

Hi Everyone! Well I've started to make a transition from this site to another. For the time being I will continue to write my blog here until I get my new site up and running. The site will have the same name it's just that I have registered the domain to make it my own. This would be a great time for anyone that reads this blog to make some suggestions as to what you would like to see me put on my new site.

My pain at the moment hasn't been great, as I've had some extra stress that is making it really hard to try to deal with things. It's time for things to break! Just one tiny break would be nice. If there was ever a time that our family needed it, that time would be now! I'm doing all I can right now not to lose control at a time when the storm is out of control. There isn't an easy way to explain what things feel like at the moment. As I mentioned in my last post my wife is going through her own health issues right now. She isn't getting the answers she needs, and it seems like everyone that tries to help can't help. Does that ring a bell with any of you out there trying to get help?

So how are we feeling? Well imagine yourself being on a ship all alone lost at sea, and your engines have failed. As you drift at sea your boat crosses paths with a dark storm that causes it to start rock and roll. Waves are crashing over the boat, and you struggle to hang on. It's as if your calls of S.O.S. aren't being answered, and there is no land for miles around you. Your scared and feel alone because there isn't anyone to help. This might sound pretty extreme but the reality is that this is the way you feel when you aren't receiving the help that you need. You don't know which way to turn or who to talk to because every way you turn yields no answers.

At a time like this the amount of mental stress that a person undergoes is simply amazing! I wanted to illustrate the affect that mental stresses have and that they shouldn't be ignored. However quite often they are ignored! So it's up to us to deal with them as best we can. At the moment that's what we are doing as a family. Doing the best that we can to get through the storm. When it feels like it will never end, don't lose hope and know in your heart that it will come to an end. As a family we rely on God to give us the answers that we need and He is always there to save us!

Friday, October 15, 2010

For Better For Worse!

Finally back for another post! I can honestly say that my pain hasn't been good at all as of late. I've been dealing with all kinds of flares ups, and it's been really hard to tell from one day to the next what I'm going to be like. Thanksgiving was good however I was dealing with a lot of pain. There have also been a lot of extra stresses that have added to the pain. However I refuse to let this knock me down. It hasn't only been the physical pain as of late that has been an issue, mentally I've been struggling as well. When the two collide it makes it really difficult to function the way that you would like to.

What do I do when things get like this? Find a way to overcome! There is most definitely an inner strength that has had to rise up this week, to keep me focused on not allowing the pain to dominate. I've had to rely on God to give me that strength. You see at the moment we are also trying to deal with a health issue that my wife has. As a result it has added alot of extra stress within our lives. It always amazes me however that even though there is all this extra stress, how God takes that stress and carries it on His shoulders. So even though life is crazy right now I know that He will help us manage things and keep my pain controlled.

This is really important because it helps me in just being a supportive husband for my wife. If you're married and you suffer from CRPS, then you know what I mean when I say that there is seldom any time for your spouse to do the things they want to do. There is even less time for them to be sick in any way. When one of you is sick then the weight of the relationship falls on the other person's shoulders. This leaves no time for that person to get sick, or take time for themselves because so much falls upon them. It becomes a real balancing act because her needs are just as important. My wife does this amazing job looking after me and helping me, so I will do the same for her. What she gives me I'll give back to her! Some of those responsibilities need to fall on me wherever possible to create that time for her. I need to be there for her like she is for me. So together you find a way to make it happen. More importantly though I need to put her needs at the top of my list.

What I'm trying to say is that as you deal with things in regards to your CRPS don't forget that there are things that your spouse or other half is dealing with at the same time. You need to be sensitive to that and try to understand what they are going through at the same time. Do I do a good job with this? Not always because you get caught up in dealing with your pain. This is where I could do better! At the moment is one of those times where she needs me to be there for her. I want her to know that I understand what she needs from me, and I'm going to do my best to be the husband that she needs.

It's going to take the two of us to get through the various storms that each of us face. When one of us falls down the other will be there to pick them up. It's about being solid and standing together and facing adversity. Staring it in the face not backing down when times start to get tough. Doesn't it kind of sound like the day that you stood up and said your wedding vows. Stop for a minute and think about that! We will stand by those vows and take on anything that comes our way together. I love you babe! 

Sunday, October 10, 2010

Spreading The News About CRPS

For all you Canadians out there Happy Thanksgiving! I'm going to be enjoying the weekend with my family, and I'm not about to let my pain stand in the way. As I was thinking about what I was going to post today, a friend gave me an idea. How many of you have come across a doctor who knows very little about CRPS/RSD ? Well my friend had just been to the doctor and this was the case. Her doctor knew absolutely nothing about the condition. It is so frustrating to hear time after time that they don't know about the condition.

There is new information coming out all the time by doctors who are doing research on this condition. The issue seems to be though that doctors are slow in being trained to understand and be able to diagnose the condition. So what is being done to train our doctors? I don't think it's a matter of laying blame on anybody, but I do think that there needs to be a higher level of awareness. Doctors need to start taking people who suffer from chronic pain more seriously. We aren't just going in complaining about a common ache or pain. The pain is very real and there are multiple ways in which it's affecting our lives.

Don't get me wrong the doctors who do understand and know something about CRPS are great, and for the most part do everything they can to help us. What was interesting was that once my friend explained CRPS to her doctor she wanted to know more about it and how to treat. In my brain it's just a matter of getting the information out there. We are seeing more information getting out in the last five years however it needs to be faster. I just look at my case and how long it took to be diagnosed. It took a little over a year for anyone to diagnose and start treatment on me. If it had been quicker then maybe some of my symptoms wouldn't be as bad as they are.

The education of CRPS isn't only up to the medical community, it's up to us as the ones who suffer from it to work with them so that they can learn. It's this ability to work together as a team that I think we need to see change. If I had to give up a dollar for every time that I've heard someone say " the doctor doesn't know anything about CRPS " then I'd be broke by now. In a lot of cases though this is where it stops. We need to start drawing more attention to CRPS, and raise awareness to a whole new level. Don't think that for a minute that you can't bring about change because you can!

If you do some research you'll find people who have started groups, or are trying to raise awareness in various ways. Get involved and try to make a difference! If we all get involved then people are going to start to listen. Then if we're lucky change will follow behind that. I've seen some real positive changes in the last five years since my diagnosis. As the people who work with me gain knowledge they've been able to alter treatment plans and learn so much more. They are starting to get to people who are being diagnosed faster and therefore starting treatment sooner. This then betters their chances at minimizing the symptoms and trying to reverse the condition.

In theory it seems so easy but in reality it isn't. Seeing change and breakthrough takes time, and it also takes effort from all sides and parties involved. I've been learning that it doesn't do me or anyone else any good to just complain about what people aren't doing. I need to start focusing on what I can do to do my part to bring about that change that we'd all like to see. I'm not asking for a cure tomorrow, although that would be nice!! I am saying that CRPS needs to be recognised more, and that I can be a part of making that small change happen. I believe that it's about taking one step at a time, working together towards one common goal. As you start to make small changes then bigger changes start to happen. What are you doing to raise awareness? Leave me a comment.

Wednesday, October 6, 2010

It's Thanksgiving! What Are You Thankful For?

Well Thanksgiving is only a few days away and I don't know about you but I'm getting ready to eat my body weight in turkey!! Oh ya did I forget to mention that I'm also going to do the same with the stuffing, mashed potatoes, and of course my favorite pumpkin pie!! I haven't really thought about how I'll work it off, but I'll worry about all that later. Worrying only makes our pain worse doesn't it, so I guess I won't worry about it then. My pain has been all over the map lately so it's really hard to predict one day from the next. I can only hope that things settle a bit over the Thanksgiving holiday.

Over the holiday we'll go out to our cottage and visit family, clear up all the fall leaves that are dropping, and finally close down the cottage until spring. It's always fun when all the family is together and I'm very thankful that I have all the extended family that I do. As I was thinking about being surrounded by the great family that I have, I started to think about all the great people that surround me as I go through this season in my life. As suffers of CRPS know, it can be easy to forget about all the things that surround us that we truly need to be thankful for. In my case I have really good people in the health care system that surround me who are trying to make a difference and truly want to see me get healthy again.

When I look back at all the help I've been given so far, I need to be really thankful for the level of care that I'm getting and everything they do for me. There are so many things that they do that make the difference in my treatment. It's also all the small things that they do like changing schedules to accommodate, or even opening their door when we need someone to talk to. They really do understand what I go through on a daily basis and if I wasn't surrounded by such amazing people it would be a much harder fight. They have a vested interest in this fight, and that's to see me get better. They also keep me focused and motivated to keep fighting.

What they are doing is more than just their job. They are always looking for that one thing that will help you. If you think about it they don't have an easy job dealing with us. Each case of CRPS is a little bit different, and you need to treat each person a little different. I'm just thankful that there are people that are trying to help me, and to those people I just want to say thanks for all that you do. If it wasn't for everything that you do for me on a daily basis, my symptoms would probably be worse than they are. People need to understand that those professionals are learning along with us, so it's important to work together so that we learn from each other.

The level of support that I get would be really hard to find anywhere else. That in itself is worth its weight in gold. As many of you know just getting somebody to care can be hard. I can't begin to say enough about the people that provide for my health care right from Dr.'s to the therapists. It's Thanksgiving! Take some time to reflect on what you are thankful for!!

Saturday, October 2, 2010

Raising Awareness For Chronic Pain!!

Back for another post! Actually by the time that you start reading this I'll be sitting back relaxing at our cottage on the lake. Actually there will be a whole lot of leaves that need to be taken care of seeing as we are well into fall and the cold and snowy winter isn't far away!! I love this time of year because the colors at this time of the year are truly spectacular!! It's also that time of year that we'll have to close up the cottage until next spring. 

The other day as I driving my daughter home I had to stop and wait for a train. Who in there right mind builds a city, and puts train tracks running right through the middle of the it. Seeing as we weren't going anywhere fast I got to talking to the person in the car next to mine. I soon discovered that she had been recovering from brain surgery for a brain aneurism that she had suffered from. So she had been suffering from severe migraine like headaches. We got to talking about chronic pain and how people either don't take you seriously about it, or just don't see it as being as something serious.

It can be so frustrating dealing with something that clearly so many people just don't understand. I have come across so many people who tell me that their doctor just doesn't understand how much pain they're in. They also tell me that they are told that it's all in there head and that it isn't real. Early on before I was diagnosed I was one of those people who was misunderstood. It wasn't that the doctors that were seeing me didn't care I just don't think they had enough understanding of what all involves. Really all you have to do is look at the sheer number of people who get told that it's all in their head. Could there be a common link between all those people? Or are all those people crazy?

There are roughly 75 million people that live with some form of chronic pain in the U.S. alone. I don't know what the numbers are here in Canada, or around the world for that matter. We need to draw attention to this and start letting people that we won't go away and that we are just as important as the next. There is a site that I came across that is doing just that. The site is called and I would encourage you to go to the site. On the site they say that pain has become the invisible disease and that it goes untreated and underfunded. Aren't these two areas that need to be addressed? We need to do as much as we can to start raising awareness!!

You can read everything for yourself on their site, I'm just trying to say we need to do everything we can to help the cause. Don't think that just because your one person that your say isn't important. Just think of what type of reaction we might get if each one of us were to write a letter to our Federal Health Minister. I'm not saying that this is all it would take but it's a starting point. To often we take the approach that nothing can be done.I'm guilty of that myself. Ask yourself what you've done to raise awareness for your condition. We need to see education taking place within our medical communities. It isn't that there isn't education happening we just need to raise it to a whole new level. Instead of saying that nothing can be done our mentality needs to change into thinking that something can be done. It's about taking baby steps and as we start to see the awareness then change will follow.

Wednesday, September 29, 2010


Have you ever felt like you have a giant dark cloud following you? Well that seems to be what's happening right now. The other night my youngest daughter decided that she was going to close her bedroom door on the hand that I have CRPS in!! I know she didn't really mean to hurt me, and she really upset that she had hurt her daddy. So as you can imagine my pain is at an all time high and I really need some relief! It just seems like I can't catch a break. One thing seems to happen after another and quite frankly I'm tired of it. Anytime things want to stop happening they can. It's time for something good to happen to me. I just have to call on God for an intervention!!! The way I see it I have no choice but to see it as yet another test of my faith.

I started to look back today at all the times that my faith has been tested through all this, and I wanted to reflect on a few of the amazing ways in which God has been there when I've needed Him the most. I can remember feeling a whole host of emotions when this whole thing started. I remember feeling scared and angry, and like things were spinning out of control. I was trying to figure out what was happening, and why it was happening to me. There was a point at the beginning where I was angry because nobody could give me any answers. Deep down inside I knew that there had to be some answers! 

What I found I needed to do was put more of my faith and trust into God. I started to realize that this whole thing was so much bigger than what I could handle on my own. I needed to ask for God's help and guidance to get through this. He started to help me deal with some of the anger and frustration that was building up inside. God challenged me not to be angry but to try to understand, learn, and grow from what was happening.  At the start I was also filled with all kinds of different fears. There was not knowing if I would get the use of my limbs back, to how I was going to be able to pay my bills, and how we would survive financially. Again I found myself having to put complete faith in Him and trust that He would provide for me in these areas. Once again there have been challenges along the way. 

There was no better example of this than when we were adopting our second child Katelyn. We were stretched to the max financially, and didn't know where all the money would come from that we needed. One day the doorbell rang and  it was a courier from UPS. We weren't expecting anything, so I have to say that I was interested in what it may be. The courier then proceeded to hand me an envelope. Upon opening it were two checks and a note that said to use the money for whatever we needed to and that God loves us!! I was beside myself trying to understand what had just happened. Along the way there have been all kinds of financial stresses similar to this. However we've remained strong in trusting that God will provide financially and so far He has.

God is still working on the physical side of things, and I need to have faith that He will restore use to my limbs again. So although I may not have the physical use of those limbs the way I'd like He has removed any fear that I was dealing with and challenged me to wage a war. Do I have days of doubt? Yes! Do I have days where I just want to give up and stop trying? Yes! It hasn't been all easy and I'm still struggling at times. Do I lose faith? No! Do I stop trying? No! These are two things that God has given me to stay strong and to keep fighting.

As time has gone by there is a new confidence that God has placed within me. This has been huge because as things have been thrown at me I have been able to handle them better. Does this mean that things are perfect? No! It means however that I take things on with God fighting the battle for me, not trying to do everything on my own. We often have a hard time placing things into other peoples hands. What you need to realize though is that this is God's hands! Nothing is to big for God! That's why I can laugh at the big dark cloud that seems to follow me around, because God is right there with me. 

Sunday, September 19, 2010

Reaching Your Limits!!

Today has just been one of those days! I'm tired because my physio took a lot out of me today and it's taking every last ounce of energy to cope with my pain. I've been back and forth between the kids school three times today and what finally did it was when my 6yr old had a redundant conversation about how many days she had been in school this week. I answered the question for her and she proceeded to ask again, and so once again I answered her. It finally ended in her having a meltdown on the drive home, apparently I wasn't understanding the question or something like that!!  I just want to go my happy place today!! Oh! Did I mention that I have to go to parent night at the school tonight!

On day's like today my stress level is a little higher, and therefore my pain gets a little more intense. My plans tonight will be to come home, get into bed and get lost in the good book that I'm reading. Hopefully I'll be able to get lost in my book, and forget about all the extra stress that my nervous system is trying to deal with. Reading seems to help me relax because I'm able to take my mind away from the pain. I'm also looking forward to piece and quite.

Ok! It's time to get myself out of this funk that I'm in and put a smile on my face. I couldn't finish writing yesterday because I just didn't have it in me. The good news is that I'm more relaxed today and in a better mood, plus it always helps that my pain is better than yesterday. In a little while the family will be packed up and heading to the lake for the night. It truly is one of the most relaxing places for me. I truly believe that God has blessed us in giving us such an amazing place.

I really feel that this week has been tough not only on me but on the rest of the family as well. From time to time it gets really hard and it becomes tough to keep fighting this battle. When your in the trenches fighting it can be hard, and sometimes you may feel lost or your confidence may seem shaken. It's at those times that I draw upon God for strength and wisdom as to how to keep fighting. I've really struggled this week to keep things together, constantly trying not to lose it!! At times I've felt as though I've lost my strength and fight that's within me! Trying not to let the pain win like it wants to.

It's now day three of trying to write this, and I' m going to try and finish what I started. It's hard at the best of times for me to try and control what's happening to my body. What I need to do is get my focus back on my family, and what they need from me. I need to find the strength to get back up from all the pain and other things that have been happening, and be that father they need me to be. The only way I can do that though is with God at my side. My plans are to enjoy a Sunday afternoon with my kids and wife and to laugh and play with the ones I love!! As I finish off this post I want to leave you with an inspiring song that encourages me and hopefully will do the same for you.

Wednesday, September 15, 2010

CRPS Doesn't Effect Just You!!

Today has been a pretty good day. Then again any day that I'm able to get up out of bed and not feel like I've been run over by a mac truck is a good day. I had the chance today to be on a radio show and talk about how CRPS effects not only my life but how it effects the entire families life. After the show today it left me thinking how lucky I am to have the family and friends around me that I do. If you want you can listen to the show on demand at her site. The link to the site is  . The air date for the show is Sept 14th. I would also encourage you to go to her other great site which I have listed under my blog roll.

On the show we touched a little on CRPS itself however my wife joined us and we really started talking about how this has affected our family. One of the conclusions that we came to was that not everything has to be bad. We started to list off all kinds of things that have happened that are good. It doesn't have to be all bad that we focus on. Look for positive things that have happened from within a negative situation. The more I look at it the luckier I feel to have the family that I do.

As I sit here reflecting today on everything that has happened I feel encouraged by my family and friends and everything that they do for me to support me. It isn't one person who's fighting this fight it's an entire army!! How often do you stop and look at who makes up your army? My army is lead by God who I thank every day for all that He does for me. I want to stop for a minute though and say "THANKS!" to my wife for all her love, support, and the prayers! Is there someone in your life that is supporting you in your fight? It's important to think about everything that person does for you. What's even more important though is to stop for a minute and think about how that person is dealing with things.

It would be very easy to become focused on myself as I go through this fight. However my wife and two kids are dealing with this as well, and I need to stay in touch with that. I need to make sure that I'm sensitive to how they are dealing with things, and what they need from me. It's important to realize that everything that they are going through is just as important as everything that I am going through. So staying in communication with each other and how we are all doing is very important. I don't always do a great job of it but I try, and there is always room to make it stronger. One thing I do know is that my wife and I are united in our fight to beat this.

This is a fight that we can't fight alone and we depend on more than just ourselves to get through this. I would encourage anyone reading this to stop for a second and take the focus off yourself and look at the other people in your life that need you for support as well.

Sunday, September 12, 2010

Managing Your Emotions!!

It's Saturday afternoon the kids are having quite time, therefore it's quite time for mom and dad!! Actually today I'm feeling ok and looking forward to celebrating the Ethiopian New Year tonight. In case you didn't know we adopted our youngest daughter from Ethiopia. It's always a great time to get together with other adoptive families and we always have a great time. I've been having a tough week this week, trying to deal with the pain and some of the other symptoms of CRPS. However that being said I had a relaxing night alone last night thanks to my wife! I went out to our cottage and just enjoyed the quite and a night to myself with no kids.

It's night's like last night that help you get from one day to the next. It may only be one night but that night in my books is like gold!!!! Sometimes your pain creeps and creeps up on you, getting just a little bit worse each day. Finally it gets to the point where your body needs a break. Often I need reminders that I need to slow down or take some time to be quite. I feel like an adult who needs to be put in time out!! However because my body has a hard time slowing  down by itself I need to make it slow down. Spending the night alone last night did just that, it slowed things down and helps me in managing the pain.

Now that I've slowed things down and my pain is better controlled, I'll be able to enjoy the night out more with the family. When my pain is at a tolerable level, then it makes it so much easier for me to interact with my family. The emotional side of things can be so tough because you don't really see how much they can influence your pain until things get really bad. Often it takes someone telling you to take a breath and slow down. This is the time for your TIME OUT! Often people talk about your physical pain but forget about how your emotional state plays a part in all this as well.

When you suffer from chronic pain you don't just suffer from physical pain. Your emotions come under attack and it can sometimes be worse than the pain itself. This might seem easy to control however it isn't. What makes this difficult is that there are so many ways in which your emotions can be set off with a condition like this. There are days that I have a really hard time keeping them under control, however with help from the people around me I manage them the best that I can. There are lots of people however that don't understand the emotional side of our condition, and to those of you that don't I hope I can shed some light.

The easiest way that I can explain this is take a page out of my life. In many ways lots of the basic things in my life have become a real challenge. There are certain things I can do on my own and others that I need help. However there isn't a day where I don't rely on someone for some form of help.  Unless your in this type of a situation you truly can't understand the emotional effect that this has on a person. Lots of time is spent putting on a brave face and saying everything is ok when deep down inside you really aren't. In my case I have a really hard time admitting that I need help. I'd rather try doing it myself then ask for someones help.

When you spend time fighting your emotions then you cause lots of extra stress, which is then going to translate into lots of extra pain. If you don't get them under control then you'll continue to create added stress and feed your pain. Taking time for yourself is a great way to help and get them under control. What I have found to be an even bigger help however is asking God for His help. Whenever I have a difficult time with my emotions then I ask for His guidance and wisdom.

When your trying to manage your CRPS don't always think that things will be come easily. It takes an awful lot of fight and desire to overcome and win. Think about the first word in the condition "COMPLEX".  Your going to go through periods where things seem impossible to overcome. If there is one thing to take away from my post today it's this. Nothing is to complex for God to overcome! 

Wednesday, September 8, 2010

Forward Thinking!!!

Well here I am again for part two of my post on thinking forward into your future. As I had talked about in my last post, I was saying that thinking into my future helps to motivate me to get better. There are so many things that I get excited about when I think about my future. The thing that I look forward to the most  however, is being able to tell this amazing story about how I overcame something that seemed so impossible to do at the time.

When your right in the middle of the storm, it seems next to impossible to be able to get through something of this magnitude. For me I draw strength from looking at the end, and being able to visualize how things will be when this all ends. With Gods help I am getting stronger and stronger and no matter what gets thrown at me, I am able to stand strong and ride each wave as it comes crashing down on me. Through the course of all this I've asked myself numerous times why something like this has happened to me. There was even a time when I went through periods of anger, because my future was looking good before all this happened. Then in an instant it was all taken away from me! Or was it?

What I didn't see at the time was that God had different plans for my future. I'm still not quite sure what those plans are going to be however the one thing I do know, is that He's going to use this experience that I've been going through as part of those plans. What a testimony to be able to tell people! As time goes by it's one lesson after the next that I learn, and it's these lessons that are helping me to shape and build me. You see what I didn't understand at the time was that God's plans for me were so much bigger than my plans could ever be.

I just need to trust that His plans are going to fall into place when they are suppose to. I don't get angry anymore thinking about my future, because I know that He has something incredible in store for me. It's all a matter of His timing and waiting for it all to unfold. You might be thinking to yourself as you read this, how can I get excited about my future not knowing what it is? It's easy to get excited because I've experienced all kinds of amazing gifts from God already and I know that anything that He plans won't be short of amazing!!

So do you ever think about your future? Or are you feeling lost, hopeless, or even angry?  Don't for a minute think that because you suffer from a disability that your future can't be bright. There may just have to be a few changes that take place in order to get there. In my case God has given me a vision to start writing this blog and to connect with others that are suffering from CRPS like myself. Down the road I don't know what will happen, however I do have a vision that it will involve everything that I am going through at the present time.

I can really get a sense in my head as to what things are going to be like when this is all over. From that standpoint it really motivates me to do all I can to get better. It also helps a person to stay positive and upbeat and not to dwell on the negative.

One last thing before I go for today. In the next little while I am going to be making some changes to my site. I will be registering my domain and changing things a bit. I'll be sure to add a link so you can get to me, as well as give you notice before I move. I have to figure out the changes first! Talk to everyone soon!

Wednesday, September 1, 2010

Thinking Ahead!!

Well I'm back for another week! This week the kids went back to school and I'd be lying if I didn't say I was doing a bit of a happy dance!! As of late it's been none stop fighting between them so I think getting back to some form of a routine will be good for them, not to mention good for my sanity! The extra stress that the fighting causes doesn't help with my condition. It doesn't help any parents stress level when you really think about it! My pain has been up and down over the last week, but can say at the moment that things are at a level where it's manageable.

This last week my wife and I booked our flights to Hawaii for so I'm ready to board that plane right now and get away for a holiday. This is something that we've been planning for a while and is still a little ways away. However it gives me something to look forward to. I can hardly wait because it's been entirely to long since we've taken a vacation with no kids! I love my kids but it's time for some alone time with my wife. This is something we've had in the works for a while now, so as it gets closer we get more excited.

I've been thinking a lot over the last week about my future. Every once and a while I like to think forward, about how things will be when this is all over. That's the thing about CRPS you spend so much time living day to day, that you don't do a whole lot of thinking about what things will be like down the road for you. My oldest girl started grade 1 this week so she is gone five days a week now, and my youngest starts preschool twice a week so it will leave me two mornings a week with no kids. I'm sure this is why I've been thinking about my future because my kids are really starting to grow up, which starts you thinking about the future.

Let's face it I really don't know what my future will be right now only God knows that, as He maps things out for me along the way. I used to really struggle with what my future holds because it really is hard to say how things will be down the road.  I  used to think living with CRPS that my future wasn't going to very bright because of what I have to live with from day to day. It was hard to see past living with the pain from day to day, however now I'm starting to see past it and it gives me confidence to keep going. It doesn't mean that I don't have my moments where the pain clouds my vision. However it is important to realize that your future can be bright if you want it to be.

The one thing I can say when I think about my future is that I get excited when I think about it. Your probably wondering and saying to yourself how can I get excited about something that I don't know about yet? Well it's quite easy to explain. When I think about my future I start looking back at everything that I've been through so far and how it will influence my future. I look at the ways in which it has changed not only me but the rest of my family. So needless to say, there have been some amazing changes that have gone on in my life. Some of them good and some of them not so good. There has been this ability to fight and not give up which is a gift from God. If you don't think that going through something like CRPS changes you then think again. Needless to say there has been some real character building going on.

My point in all this is that as I start to see the changes in me, I start to see what those changes hold for me down the road. It's all part of something much bigger that is out of my control. No matter how things turns out as I walk down that path that God is laying out in front of me, I know that it's all part of what He is planning for me. How can I not be excited about that! Come back in a few days for part two and I'll get into more of the specifics of how thinking about my future fuels me to overcome CRPS and helps to keep my mind off the pain.

Monday, August 23, 2010

CRPS Surrounds You In A World Of Pain

I thought that today I would turn the focus towards something that I feel is a vital part of coping with our CRPS. Learning to focus on things other than our pain can be hard because it almost consumes us, and at the best of times can be hard not to think about. I have to be the first to admit that when I can take my focus away from the pain, then I go for longer periods of time with reduced pain. That is if nothing happens to cause an increase in the pain. It's the combination of trying to stay relaxed, and focused on something other than the pain that is so hard.

I sometimes feel as if all of my time is spent talking about my pain and CRPS itself to others around us as well as those closest to us. No! Let me rephrase that and say that I am always talking about my pain. I think it's important to think carefully about how we talk about our pain, because if we don't then it can feed into our symptoms and make our condition worse. However on the flip side we want to make others aware of what this disease is all about and raise an awareness to others. On those rare days that I don't talk about pain or about the pain I'm in, it's almost refreshing and to some degree you feel as if things in your life are normal.

When your in constant pain it can be hard to just forget about the pain. I'm not saying this is what you have to do, however I am saying that you have to look for ways to distract yourself from it. If you suffer from CRPS then I'm sure you understand when I say that you are surrounded in a world of pain. The way I see it there are two parts to this world that now surround us. There is the physical pain that we suffer from and then there is the way in which we deal with the pain.  The physical pain from day to day can be really hard to control and to some extent be out of our control. The way in which we deal with it is within your control. So this being said you might think that the two parts aren't related but they are. The way in which you deal with it can directly reflect on the physical pain that you feel.

I'm no doctor and am not giving any medical advice, but what I've found is that by listening and applying what my therapists tell me to do can help me with the physical pain. The more you think about your pain can make it worse so I have found that if I can manage to shift my thoughts away from the pain then I can sometimes be successful in reducing the pain. So how do you do this? There isn't an easy answer. Not talking about it all the time as I've already mentioned can help. Another thing that works is taking on a project. It gets me excited about the project and getting ready for it. Right now we are doing a small reno in our kitchen. It's something that has my mind occupied at the moment, but even more important helps me forget about the pain for just a minute. Even if it's for just that minute that I have some relief then you take it!

The reality is that if you live with CRPS then you live in a world surrounded in pain. What do you do to take your mind off of it! Do you allow it to control you or do you try to take back what it has taken piece by piece?

Tuesday, August 17, 2010

Raising Kids with CRPS = Stress!!

One of the hardest things in dealing with my CRPS is trying to take on the day to day with my kids. Lets face it the roles in this house have changed, and now I stay at home with the kids while my wife works in the morning. While everything that we face in dealing with our CRPS is difficult there are some things that are harder than others. Trying to take on the role of stay at home Dad is a tough one for me.

This particular change is one of the hardest for me. It is also one of the reasons that I continue to deal with flare ups that can go on for a couple of days at a time. All of you parents out there know that being a parent is exhausting and it becomes even more exhausting when they are fighting with each other day in and day out. It works out quite well that my wife works part time because I can only handle so much. It then becomes her turn to spend her time being referee and handling our crazy but yet so incredibly lovable kids.

It hasn't been easy to handle the kids yet I manage to do an ok job with them. I can't do everything with them that I'd like to however I do manage to give them ME which is really what matters when you come right down to it. There are days that the stress builds up I know that it will effect me in a negative way, however life has to move forward. The one thing that I'm sure of is that I don't want the kids to suffer because of me. To some degree they do because of my inability to do certain things, however that's where my amazing wife comes in. She has an amazing gift for raising kids and makes sure that they get to experience the things that every kid should experience.

The hard part in all of this has been trying to find a balance where the stress doesn't become to much, which is easier said than done. There are days where I feel like I'm holding on by my finger nails. It takes every ounce of energy within me to keep going! My wife will be the first to say that those days where I'm just holding on are the hardest to watch me go through. On days like that I really need my relaxation techniques to get me through the day.

Anybody that has kids, knows that there's stress at the best of times raising your kids. It just seems that all the little things that get on a parents nerves become amplified when you have CRPS. Let's face it the yelling and screaming that kids do is a perfect recipe for increasing pain levels. When kids fight, dealing with those issues also gets your nervous system all wound up. I could go on and on however I think you get the picture of what happens dealing with those things on a daily basis.

So how do you avoid the added stress that those things can bring on? I don't think that there's an easy answer to that. I think a person has to do what works for them to avoid flare ups. Between my wife and I we've been able to find a way to make things work. We have a great partnership when it comes to dealing with the kids, and she's able to read when I need a break. I don't always do a great job in saying that the stress with handling the kids is getting to me, so I really appreciate her slowing me down and making me realize this.

The bottom line is that there is no way to avoid the stress that is brought on by kids. It will always be there however there are lots of ways that we can minimize the stress to have a better quality of life. The way I see it I have at least seventeen more years before my kids move out!! So I need to figure things out so that it doesn't cause the flare ups.

Wednesday, August 11, 2010

Feeling Scrambled!!!

Well there's only one thing worse when it comes to dealing with pain on a daily basis. That happens to be the combination of pain with the fuzziness and headaches that you get when your dealing with CRPS. Today happens to be one of those days where everything seems to be a little more difficult for me. It seems as though every thought is just a little more difficult to proccess. What I find on days like today is that the day becomes very long and wearing on me.

On days where this happens I often try to do as little as possible because I know that this is my bodies response to slow down. To give you an idea of just how bad it can sometime get, I'll tell you about a time when my wife experienced my brain freeze and was ready to kill me. We were playing a game of scrabble and I was feeling like I am today. As it came around to being my turn I spent the next few minutes making a word, not really understanding how long I was taking. If it wasn't bad enough I was also making three letter words like mad, sad, and bad. I'm pretty sure that by the end of the game she was ready to kill me.

So if you are having a hard time reading this and some of the sentances don't make sense then have mercy on me because I'm having a hard day. From time to time the medication that I have to take shows, some of the nasty effects that it can cause. However it's not all the medication that causes some of these crazy things that happen in my head. The disease itself causes some of those headaches and some of the fuzzines.

These side effects in some ways can be worse than the pain because they really shut things down in your head, making it hard to function the way a person expects to function daily. All one can really do is fight through all the symptoms and hope and pray that tomorrow will be a better day. So for today I'm keeping things short and maybe the next day I post I'll be feeling better.

This is another reason that I have chosen to get the implant, so that I can reduce the amount of medication that I have to take. Hopefully this will help so I don't suffer from these things. Bye for now!

Sunday, August 8, 2010

Pacing Yourself

One of the things that can be a problem for me is trying to pace things, so that I don't cause myself any more pain. There are lots of times that I push myself too hard because I just want to get better. So what happens is that we end up having to back off my physio so that my pain can subside a bit. Or it can just be me overdoing it in general. My bodies response however is the same flare up!!

We have been trying really hard as of late to try and get some more movement in my ankle. I really didn't think that I was overdoing things, however my body recently has been telling me a different story. It seems as though I have been overdoing it and now I have to start listening to my body again! It can be really hard when the signals aren't getting through to the brain properly. I might think that I'm doing things within my limitations when really I'm not. What I'm finding is that I need to really take the time to slow down and make the right decisions. Might sound easy to do however when your dealing with CRPS that isn't so easy.

With every decision that you make it can be like a ticking time bomb because you don't know if it's going to set off a flare up. So you try as hard as you can to take things slow and increase the things you do slowly so you don't wake the angry giant that is inside. Tell me that it isn't frustrating that I can't take a simple walk around the lake that I live by!! I try to stay positive and see any bits and pieces of improvement as positives. It still doesn't make it easy, because for years doing the basic things in life where so easy for us. You learn to appreciate those simple things.

All the ups and downs can be really hard on us, and we can't give in. We need to stay focused on all the things that our therapists tell us to work on. Listen to them when they tell you that you might be overdoing things a little to much. Sometimes our wants and needs can stand in the way of us making those decisions that are right. You need to listen to the advice of the people that are helping us. Remember that they want to see us get better along with everyone else.

Just remember to take things at a pace that doesn't set you back, but keeps you moving in a forward direction. We need to learn how to read the messages that our body gives us. When I do a good job listening to my body then I find that I go for longer periods of time without a flare. When I'm not taking those things into consideration then the opposite happens. It's about finding a balance, and as you do that then you start to see progress. As you pace youself then you start to create a balance. The hard part is trying to keep pacing yourself.

Thursday, August 5, 2010

A Lesson In Faith!!

Once again my body is screaming with pain!! I think it's safe to say that yet another flare up has started. I'm back into my fighting mode, and keep praying for some relief from the pain. When my pain gets this way there is very little I can do to get it to subside. It takes everything inside as I've said before to keep things going and to stay positive.

It's at this time when I can't take anymore that my faith is tested, and I have to rely on God to get me through the tough times. I've mentioned before in previous posts, that without God I wouldn't be able to get through what I'm going through at the moment. It can be really hard to walk through something as big as this in faith, and not have moments of discouragement. There isn't a day that I don't ask God for my healing. Yet its been five years and I haven't seen it yet! However I continue to walk in faith.

There are times that you may ask, why do I have to go through so much pain? However there is a reason that He doesn't answer, He doesn't want us to know all those answers all the time. If He provided us with all the answers then it wouldn't be walking in faith. It can be hard to understand that sometimes, because all we want to do is get better. As difficult as this can be to understand, our faith is built up as we put our trust in Him. He wants us to learn that he's faithful to us every step of the way.

Tonight I came across a song that explains perfectly what I'm trying to say. The artist is Jeremy Camp. Listen to what the song is saying. Our faith is constantly being tested as we walk through something like CRPS, or anything else for that matter. I just want people to know that it's ok to feel discouraged as you walk in faith. The important thing is to keep walking in faith!! I hope you find encouragement in what it says.

Thursday, July 29, 2010

Learning From Our Challenges

Well after last week my pain seems to be doing better. I'm trying to stay as relaxed as possible even though at the best of times it can be a real challenge. I'm going to try to get back to doing something that I really like doing this week and that's painting. I have just started painting in the last year and find it a really good distraction to try to take the focus away from my pain. I was finding it really hard to focus on however and stopped for a while.

Some of you may not know that before I was diagnosed with CRPS I was really into photography and it allowed me to really show the creative side of myself. So in the past year or so I've been trying to look for something to replace that hobby and painting is a natural fit. I have the ability to see the picture I just have to paint it instead of taking a picture of it. Except one thing stands in the way, my drawing skills are made up of stick men and other stick figures. The hardest part to me is going to be trying to learn the drawing aspect.

It's all about taking on the challenge however, and learning and making lots of small improvements. In lots of ways this is much like how I deal with my CRPS. It's about facing a challenge that's been put in front of you and learning to overcome it. Your going to face all kinds of things along the way however you put your head down and you keep on going. Over time as you take on each new challenge, you'll become stronger and better prepared to take on the next challenge.

In a lot of ways I think painting will help me by both relaxing me and helping me in those areas of facing challenges put in front of me. It helps to keep me focused on something other than all the pain which is also a big help. Finding something that can really distract you from all the pain is so important. You don't give the pain a chance to build and build. Not only that though, it gives you the chance to feel good about something. Ask yourself when the last time it was that you felt good about something?

I might only be able to draw stick figures at the moment however my goal in the end is to be able to hang a piece of art on my wall. That is if my wife will let me!! I can make similar comparisons with the way that I have had to learn to deal with my CRPS. At the start it was even harder than it is right now. I knew nothing about CRPS itself and the challenges that I faced. As time has gone by I am slowly facing all those challenges and learning from them. In the end I hope to be able to overcome CRPS itself.

Monday, July 26, 2010

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.

Wednesday, July 21, 2010

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?

Friday, July 16, 2010

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!!!

Saturday, July 3, 2010

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!!

Sunday, June 27, 2010

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!!

Tuesday, June 22, 2010

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.

Wednesday, June 16, 2010

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!!
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