Saturday, January 30, 2010

CRPS & Mirror Therapy

For those of you that are dealing with CRPS you may or may not know about what I am going to talk about today. I am going to attach a couple of videos today by David Butler that explain what is going on in the brain in a person with CRPS. There are three videos that I'm going to post which deal with what is going on in the brain and using mirror therapy to treat.

I know that these videos are a little long however it gives you good insight into what is going on in the brain and how we can make a difference to get the brain to retrain back to the way that it was before.

Thursday, January 28, 2010

Our Family!!!!

Up until now I've been writing about CRPS and every now and then I want to change things up and let you know a little about my life and what goes on in it. As I mentioned before I am married to the most amazing woman that anyone could ask for. Words really can't explain how much she means to me. Through all my health issues she's simply been amazing and deserves to be recognized for all the extra things she's had to take on to keep this family running.

Donna and I have been married for what will be 13yrs come this May. I am originally born and raised in Vancouver and was living there when I met her. She had moved out to Vancouver from Regina where she was born and raised. How we met was a story unto itself and all you really need to know is that it was my place of work. Donna was a nurse by profession and I was working on the waterfront for a local Yacht Charter company. We dated for a while and then ended up heading back to Saskatchewan to get married back in 1997.

We had only been married for about a year before we made the decision to move back to Regina and start a family. After a while it was evident that we weren't able to have kids, so we decided to go the route of international adoption. In 2005 we packed our bags and headed to China to adopt our oldest daughter Emily. What an amazing adventure it's been since that time. She is this amazing 6yr old girl who's smart, full of life, full of energy, and makes you laugh. She has just entered kindergarten this year and loves being in school.

Shortly after arriving home with Emily was when I was diagnosed with CRPS. However life carried on and we decided that in 2007 we would do it all over again and adopt our second daughter Katelyn from Ethiopia. We again went through all the paperwork and prepared to bring another special little girl into our lives. At the time she was 6 months old and she was escorted by the agency back from Ethiopia to Toronto where we met her for the first time. It's hard to believe but this March she will be 3yrs old. I can't imagine life without them!!

Since the kids life has been full of crying, changing diapers, watching Barney, and singing kids songs. None of which I would change because I'm the happiest father and husband in the world!!!

I may be dealing with CRPS on a day to day basis, however my family is the bright side of things that help me get through each day. There isn't a day that I don't thank God for all the blessings that he has given me in my life, ALL THREE OF THEM!!

Wednesday, January 27, 2010

Overcoming Adversity

I was going to start writing about something different today however I really felt like I needed to talk about overcoming adversity. This short video really inspired me to take a look at my day to day life and how I sometimes view the obstacles in front of me.

As the video played I started to think about each quote and found myself saying that each one of them was true. At the end I was really motivated to look at the different obstacles that I have run into since being diagnosed. Let's face it those of us that are diagnosed with CRPS or any other chronic pain condition are facing a giant to overcome. There are lots of times when we don't have the strength or energy to fight anymore. I'd like to think that our fight is much like the story of David & Goliath. Here is Goliath this big giant armed with his size and armor. Then you have David this little shepherd boy who seemed to small to defeat him. David armed himself with two things: his trust in God and his shepherd's sling. Many looked at David and thought that it would be impossible to take down this giant with just these two weapons.

What people didn't realize was that David's armor was equal to Goliath's. He was armed spiritually and with God's resources, which ultimately allowed him to take down Goliath. This is really how I look at each day as I face the pain that I go through. I arm myself with my faith in God to overcome anything.

My faith in God plays an enormous roll in how I stand strong through this adversity. Through all the times that I suffered disappointments with different doctors trying to diagnose me, or with other adversities that I have faced since being diagnosed there is one person that never fails me and that is God. The question that you need to ask yourself is how much do you rely on your faith? If there is one thing that I have learnt in all this it's that I can trust that he will always be there for me when I fall down.

I truly feel that no situation that you are faced with is to big to overcome. That's not to say that there may not be a few bumps in the road along the way. Quite often there are bumps because we have to grow or learn from it along the way. So the next time that you think that you can't deal with the pain remember that if someone like David can overcome then so can you. Ask yourself the really tough question and that is: When you've exhausted all your efforts and you have nobody left, who do you turn to?

Sunday, January 24, 2010

Pain Control

Well after yesterday's post I figured that maybe after being stuck in the house for a week that I would get out to do something. No such luck as it's a blizzard outside and I'm beginning to wonder if we are going to have to dig our way out of the house after this storm has finally rolled through.

Today when I got out of bed I knew that the day was going to be difficult. My pain level is really bad and it's taking all my strength to get around. So maybe it's a good thing that the snow is flying!! With my CRPS when I wake up I know almost always how my day is going to be within the first ten minutes. There are mornings that I wake up paralyzed in pain unable to move my limbs that are affected because the pain is so intense. To make matters worse there are headaches along with the pain which are like migraines.

On mornings like this it can sometimes take me 30 minutes just to get out of bed after I awake. This was the case this morning. When this happens I become more aware that I need to stay focused on managing the pain. I find that I have to take some time for myself and do my breathing exercises, to try and calm my nervous system down. I do this to try to relax my nervous system because on some mornings like this morning it's racing. Being awake most of the night with my pain last night however doesn't help the situation. This only makes matters worse.

There are days where I wish I had control over my nervous system and could turn it off. I've come to realize the importance of doing my breathing exercises at times when the pain is out of control. It's true that it might only bring temporary relief until things flare up again however it does help and any amount of relief that I can get I will take. Where I find it difficult is that I have two kids under the age of 5 as mentioned in previous posts. It's a real challenge for me to find that quite time for me when the pain gets bad. It's not that easy when your 3 yr old is throwing a tantrum and you have to deal with a kid who's limbs are flying around on the floor as she cries hysterically!!

What I find difficult is learning to recognise when my nervous system is getting wound up tighter and tighter. Everybody faces stress on a day to day basis however it has an even bigger effect on those of us with CRPS. A person with CRPS reacts differently to stress and there nervous system starts to speed up and can't slow down. I have started using a program called " Healing Rhythms " and this really helps calm my nervous system down using simple breathing techniques. It's a constant battle to stay on top of trying to relax and not allow my nervous system system to get too wound up.

Today might have been one of those days where the pain wasn't good but it was a day where I was able to control the pain. If I can gain an ounce of control over the pain then I have to say that the day has been good.

Saturday, January 23, 2010

Pain has it's Up's & Downs

Today is a snow day here in Regina so what better thing is there to do but update your blog. Although I had all day to update and here I find myself doing it at 11:00pm. Over the last couple of days I've been struggling with my pain level. For the past couple of days my pain has kept me parked on my sofa a lot of the time. During this time I've found time to put some links on CRPS that people may want to check out.

I would really like people to make some suggestions as to what I should put on my site. As well I'd like peoples suggestions as to where to find videos on CRPS because YouTube only has so many.

My pain level has not been that great today so I felt like I needed to try my best to forget about things for a bit. Even though I have a real hard time walking it was really important to me to get outside and watch my kids play in the snow. Just hearing them laugh and play was enough to put a smile to my face. Its so hard when your hurting to be positive or to even laugh. It's not for lack of me trying, it's just that I'm in so much pain that I find those things hard at the best of times. So when I am able to have a day like today and laugh with my kids I consider it a small victory and a step in the right direction. I might be in pain however the distraction is good for me and those of us with CRPS need to focus on these positive things that happen.

When I do things like what I did today I start thinking that the pain doesn't have to control me. It allows my nervous system to slow down a bit so that the pain isn't quite as intense. I was feeling pretty good and in control of the pain and had hopes in having a day that didn't end in pain. However like only CRPS could do things changed pretty quickly as the kids started yelling and screaming as they played today. I can't blame the kids because they were only being kids. Just like that my pain got really bad because of the noise and the stress that kids create. It can change on a dime and that's what I feel so frustrating.

It gets pretty discouraging because I was hoping for a good day. What I am finding though is that I am doing a better job of controlling my pain level when this happens. I'm not always successful at doing this but I'm recognising the fact that I need to take control of the situation and that I need to control the pain and not let it control me. So I'm happy to say that I managed to control it to the point that it didn't get any worse today and that's pretty big for me. Can I say that I had a great day "No", however I did win a small battle today and was able to control the pain better. So can I say that I had a bad day "No", but I can say that I am one day closer to getting better.

Wednesday, January 20, 2010

What is CRPS or RSD?

When I started this blog I gave a very brief description of what CRPS or RSD is. I just wanted to share these short clips with everybody. I also included a short clip linking depression with CRPS which is very common. Those of you that are watching this and you are newly diagnosed need to listen carefully to what they are saying because there is important information with these clip. For those of you that don't know what this condition is all about, I hope you gain an understanding of what it is that those of us that are diagnosed go through on a day to day basis. I plan to put more clips about the condition on my site in the future so please become a follower of my site.

The second clip about not toughing it out is really important. If we keep trying to do that we are only hurting ourselves. The health care system needs us to be vocal and tell them how we are feeling so that treatment plans can be made, but most of all so that they learn from us in order to be able to treat us. I know it's hard for those of us that are dealing with this illness to find the positives in all of this, however in many ways we control whether we want to get better or not. If we work with our specialists and therapists and they work with us then we better our chances of getting better. I urge people to tell there doctors how there feeling!!!!

Tuesday, January 19, 2010

Mind Over Matter!!

Today was another day of lying flat on my back and trying to heal from the surgery that I had a couple of days ago. I'm only on day 3 and after speaking with the surgeon apparently I will have about 10 or 12 days of real discomfort before the pain calms down a bit. The problem that I have is that because I have CRPS there is a good chance that the pain is worse because of that and it may take a little longer to heal because of my condition. I won't get into what type of surgery was done but now I have some metal implanted in my body and lets just say that there are a lot of jokes going on about it.

I'm finding my pain levels at the moment to be a real challenge because with CRPS your pain gets so exaggerated and it's extremely hard to tell what the real pain is like. Today is one of those days where I try to do anything to block the pain out including doing relaxation to try to calm my nervous system down. However even when I try to do the relaxation I find that the pain is to great and I have to stop or it makes the pain worse. Days like today are the ones that I find most frustrating because you have no control over your own body. What is frustrating is the level of effort that I put into trying to decrease the pain while using all the techniques that my physiotherapists have given me.

When my level of frustration builds like this I need to remind myself about the fact that this isn't going to get better overnight. I need to remember that if I don't stick to the program and the treatment plan that has been set out for me then I may as well say goodbye to any improvement at all. Tonight is one of those nights that I truly need to say " mind over matter". I'm finding it so frustrating however tonight because of those constant reminders of how things have changed being in my brain all day today. My oldest daughter was playing with me today and wanted me to pick her up to touch the ceiling. I then told her I couldn't because I needed both my hands. She then starts reflecting on how much fun it used to be when I did it. There have been days when she's looking through old pictures and she"ll say " remember when you had two hands daddy". These are the reminders I constantly get and it makes it hard especially if you don't know 100% that you'll get the use back.

It's at times like these that it starts that viscous circle of how things used to be, and that they will never be normal again. I have been trying much harder lately to try to change this way of thinking because this plays a big part in remapping my brain to bring about changes in it. The more I tell my brain that everything is ok and that things are going to get better the more likely I am to bring about positive changes within it. For someone reading this that doesn't have CRPS you would think that this was just an every day way of thinking and that it's all about having a positive attitude. However it's not that easy for those of us with CRPS. We have to trick our brain into learning these things over again, so that we can reprogram our brains so to speak telling it things are fine.

Nights like tonight take every last ounce of strength inside me. I know that I will be lucky if I get about 2 hrs of sleep. However I do need to stay positive and believe that tomorrow will be a better day. I just needed to vent today because days like today are the ones that are so difficult.

Monday, January 18, 2010

Putting it into Perspective!!!

I've had some time this week to look back over the week after having some surgery as to the health care we receive here in Canada. As I've been doing nothing but lay on my back over the last couple of days I've been watching and reading about all the events happening in Haiti over the last week. It's really made me thankful for all that we have here in our country. We spend so much time complaining about all the bad things with our health care system that we don't think about the good.

So often is the case that we complain about the quality of our health care and that it doesn't meet our standards. Then something like the earthquake in Haiti happens and it puts everything into perspective. Some people in this world don't even have a doctor to go see, yet we spend a lot of time complaining when we've seen two or three doctors and they can't figure out what's wrong with us. Or we spend a lot of time complaining when they don't get our treatment right. I know we get frustrated and we just want to get better but I think we can do a better job of spending less time complaining, and focusing on the good. It's so hard because when your sick or have something wrong with you a lot of the time we want things to happen "now" and we lose site of how good our system really is. Have you ever stopped to think that some of the top physicians in the world are from Canada?

From the bottom of my heart I am thankful for the team of people that have been looking after me for the past 4yrs since everything started happening. From the doctors to the therapists that work with me I am ever so thankful. We need to look at simple things like being able to pick up the phone and call our doctors when we aren't feeling well and are feeling pain. As Canadians we just ask our doctor for a prescription and that is that. In some other countries they don't have it that easy. They don't have some of the pain medications we have. When I think about the people that are laying in the streets in Haiti missing limbs or the people dying waiting for some form of help I get a pit in my stomach thinking about it. It makes me very grateful for the level of care that I get. Let's not forget that things are a little different in a situation like an earthquake however this is a country that had nothing to start.

When you look at the quality of care in our country compared to many then it's a real dose of reality. So often though it takes a crisis like what has happened in Haiti for us to realize how good we really have it. The sad part is that after a while people lose perspective of this and they will be back to complaining that they aren't being cared for at the level that they deserve. Am I myself guilty of thinking this way? I think I am because I start demanding a certain level of care instead of just being grateful that I have care at all.

There are lots of times when we want to focus our attention on the negative experiences that we have had with our doctors and what they aren't doing for us. I am guilty of thinking this way myself sometimes, however we need to be thankful that we even have one looking at us at all. Lots of times we lose perspective because our desire to become healthy is so strong. We don't want to except no for an answer or believe that our physicians don't have all the answers. What we need to look at however is being grateful that we even have a doctor to try and figure it out with.

To put everything into perspective I look back at my struggle with being diagnosed with CRPS. I was angry that it took so long to be diagnosed. I felt a lot of frustration towards the doctors, who I felt should know about this condition. In reality I just need to be thankful that I was diagnosed at all. As a society we seem to have developed this sense of entitlement to the quality of care that we receive. I do believe there should be a certain standard of health care. All I'm saying is that when things don't necessarily go the way that we want to them to just think about it for a second before you criticize the system. Sometimes I feel like I don't have the right to talk in a negative light in regards to health care.

At times like this when you have a disaster you can't help but think that there are people in places dealing with things much worse than what people like us are dealing with. We need to think about the fact that we have food, water, and medicine along with other basic supplies. I might be in pain every day but I'm not dying. I live in a country where I don't have to pay for basic health care. We need to consider ourselves lucky that we don't have to spend a month's wages to see a doctor.

So many of us have found lots of negative things to dwell on when we look back at our system however if we spend a little time looking at the positive I think we would find ourselves moving forward in a more positive light.

I just feel like today I had to go off topic because of the situation in Haiti. I want to say to everyone that we need to pull together as a nation and do whatever we can for Haiti. Whatever way you see fit to do your part I urge you to do it. I also want to say that the next time you become frustrated with our system just be thankful that you even have one. I know I need to do a better job myself thinking about that.

Wednesday, January 13, 2010

Positive Change

On Sunday night I was watching the show "Brace For Impact" about the heroic pilot Capt. Skully who landed the plane in the Hudson River. In the show there was one particular interview with a retail executive that struck a cord with me and had me thinking about what has happened in my life. After the crash she decided that she was going to leave her executive job and work for the Red Cross. Having been through something as trajic as that it had changed her perspectives on life. The corprate world and making the money she was making no longer mattered. What mattered more to her was to help other people in need. Until she had been through the crash I don't really think she had really looked at what she was getting out of life.

This really got me thinking because when I got sick I to had a successful job and was making good money. I was working long hours and didn't get a lot of time with my family. Then everything changed and I found myself disabled and my perspectives started to change. I was so caught up in my job trying to provide for my family that I didn't stop to look at what was missing. Now don't get me wrong my family life was good it wasn't that it was bad, I just feel like I was missing out on certain things at the time. I wasn't really aware of how much time I was away from my wife and kids with my job. Now that I look back at that I can see just how much time I was away from my family because I was a slave to my job. Sure I may be at home disabled however I get to be at home with my kids!!

So in a lot of ways my diagnosis has changed my life for the positive. It's these types of things that I use in my life to draw strengths from. It doesn't all have to be bad when you get diagnosed with an illness. When I hear stories like hers it encourages me because I can relate because it's happened to me. As I battle from day to day to try to get better I think about the positive changes that have happened in my life. If I'm having a bad day and the pain is really intense sure there are days that I would just love to stop fighting and give up. It's at times like that that I think about the fact that I'm at home with my kids watching them grow up. I just have to think about them for a minute and they put a smile on my face.

Sure in a lot of ways life has changed and I can't do lots of the things that I used to do. However for every negative that has happened I like to think that there's a positive that is there as well. Always look for the positive and you will feel encouraged.

People say to me how can you be happy when so much has gone wrong with your body??? My answer is that I'm trying to make the best out of a bad situation. I'm choosing to be positive and not let the bad things that have happened to me win. I can either choose to live my life as one big pity party for myself or I can choose to move on trying to get better and make the most out of what I do have.

I guess what I'm saying is that because of everything that has happened I value my life a whole lot more, and the decisions that I make. There have been lots of changes over the course of my illness however I don't see them all as negative, as there are positive ones as well. I hope that some of you that are suffering from chronic illness will be encouraged that it doesn't have to be all bad!

Saturday, January 9, 2010

CRPS & My Diagnosis

It's hard to know where to start with this blog because there are so many different topics that I could talk about. I don't think it would be right however if I didn't give you a bit of a background as to the events that happened to get me to where I am today. To try to sum up the past 4yrs is difficult to do seeing as so much has happened during that time. Over the past years there has been a hole host of emotions that I have experienced. There have been times of happiness, sadness, fear, and anger to name a few.

In 2006 I was diagnosed with CRPS. The clinical definition of CRPS is that it's a chronic progressive disease characterized by severe pain, swelling, and changes in the skin. The cause is currently unknown however trauma or surgery are precipitating factors in the condition. It most commonly affects a persons limbs and in my case I can't use my left hand or my left ankle. A person's central nervous system plays a significant role in this as well.

In my case surgery was my trigger and after having some cysts removed from my left arm my hand started to swell and turn blue. Soon my arm from elbow to fingertips was greatly swollen. I started seeing specialist's however they didn't seem to be able to figure out what was causing all the swelling. For a full year I spent time bouncing from doctor to doctor with no results!! My frustration was growing and the pain was becoming more and more intense. I remember feeling so much anger because it felt like nobody cared about my case and that I didn't matter to each doctor that I went to. As I left each office the results were always the same, I would leave not knowing what was wrong.

Finally I decided that I would go out to Vancouver where I saw a doctor recommended by a friend. Within minutes of meeting with this doctor I had my diagnosis. One of the things with CRPS is that if you catch it early enough there is a chance that you can get it to go into remission. In my case nearly a year had gone by and the changes in my bone, nerves, and muscles may me irreversible. There was all kinds of anger I was feeling because if only if it had been caught earlier then maybe there would be a chance.

When I got back home to Regina I was refered to a specialist who then put me on what I like to describe as a cocktail of drugs to try to reduce the swelling and minimize the pain. I was also put into an intense physio program where I remain today. At that given time it was as if I almost needed to have a little pity party for myself. Life had changed dramatically for my family and myself and I was feeling all these emotions and didn't know what to do. Up until that point I had been the provider for the family and my wife stayed at home with the kids. Now the rolls had changed and I was staying home with the kids. Then as though it wasn't bad enough already I tore the tendon in my left ankle and the CRPS spread to my ankle. It was one thing to have a hand that didn't work but now my leg wasn't working and I now walk with a cane.

I won't bother getting into the nitty gritty of what went on during those 4yrs because like I say the details are to long. All you really have to understand is that there were a lot of ups and downs over that time and there will be other posts that speak to some of those times. There are two choices that I can choose from as I fight this battle. I can choose to stay positive and do all that I can to get better or I can choose to let it defeat me. I am choosing the first choice!!!My faith also plays a huge part this fight. Without my faith I wouldn't be able to stand up and fight when it feels like it's all to much.

Waking up and getting through the day in as little pain as possible is now my daily challenge. Having as normal a family life as possible is also another challenge. When you put the two of them together you are living the life that I am living right now. I feel like the luckiest husband in the world to have a wife who is so understanding of my condition and does so much for our family. I have amazing kids that don't see Dad as disabled, but see me as fun and loving.

It is now time to stop because I can hear the snoring!!!! Hope some of the background into my diagnosis and how I got to where I am at today.


Wednesday, January 6, 2010

Hello and Welcome to my Blogg

Hi everybody and welcome to my blogg!!!! If this is your first time visiting my blogg then you are reading my very first post! I have been thinking about starting this blogg for some time now and finally got the nerve to do it. I don't really call myself a writer so I'm hoping that I don't lose you by the end of the first paragraph.

If you had asked me five years ago if I'd some day be writing a blogg the answer probably would have been "no" however things changed dramatically in my life and here I am writing it. What changed in my life was that I was diagnosed with a disease called Complex Regional Pain Syndrome or CRPS for short. Some people or some doctors will call it RSD. The easiest way to explain it is that it's a neurological disorder that affects your limbs, causing chronic pain, swelling, along with other symptoms. My left hand and left ankle have been affected and at the moment don't have the use of them.

The changes that have happened in my life and in my families life over the past five years have been unbelievable and as time has gone on the desire to write about the challenges, and changes has only gotten stronger and stronger. During this time I have also come to realize that the support for people suffering from chronic conditions like this is very limited. This is another reason for starting this blogg because I would really like to connect with other people that either have the same condition as myself or with other's dealing with chronic illness.

Other posting's that I will make will get into the different aspects of how my life has changed or how I deal with the day to day pain. Some posts will simply be about how that given day has gone.

Unless you are living with this condition you truly don't understand what a person goes through while trying to live your life to some form of normalcy. One thing however that I never lose site of is that I have to stay positive about my situation and that some day I may regain use of my limbs. Having a positive attitude and trying to stay focused on getting better has to be at the front of my mind. Does that mean that I'm not allowed to have a pity party for myself every once and a while???? Absolutely not!!! You have to allow your emotions out every once and a while. What I'm saying is always have a positive attitude that you will get better.

I want to have fun with this blogg so some posts will be funny and hopefully make you laugh and others will have a more serious side if I want to get a point across. I really look forward to making all kinds of new friends in the blogging community and also enjoying there bloggs. I hope that you didn't find todays post really heavy or boring however I wanted to give you an idea about what my focus with this blogg will be on.

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