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.
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