Pain Has Its 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.

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!!!!

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.

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.

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!

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.

Ross