Been on Hiatus

Hi all! Chronic illness decided that it was going to unleash its fury on me for the past few months. So I ended up taking a break with my writing. Along with other things medications have made writing difficult for me. So instead of adding more stress into the mix, I decided just to take a little time away. Now its time to get back at it!

I don’t have any awe-inspiring messages for you. Although I wish there was! Lol! If I can manage to put something together that has any form of a message at all then I’m doing really well. My writing isn’t on the NY Times Best Selling list and it probably never will be. I write for the simple reason that it helps me express everything that I’ve had to walk through on this journey. Most of all, however, it allows me to share with so many of you who might be on a similar journey.

Okay! So the sharing side of things has been lacking a little lately. Taking care of “me” has to be the priority right now though. That might mean that I have to step back every so often when things get difficult. Things haven’t been easy over the last couple of months. The word “complex” would be an excellent choice of words to describe my health right now. So much so that there are days that I just want to wave the white towel in surrender. Although I refuse to ever do that!

Some days I just wish I was off on my dream vacation to Bora Bora! Relaxing in my glass-bottom hut watching all the fish swim underneath. Unfortunately, the closest that I’ll get to tropical fish swimming right now is one of those large fish tanks they often have in the waiting rooms of Dr’s offices. Lol! It is ok for a person to dream, isn’t it? With everything that’s going on right now, sometimes my mind just needs to escape and go to its happy place.

As I mentioned, things have become more complex with my health since May. Honestly, it has caused me to struggle a bit at times. Is it all related to my CRPS? At this point, I really can’t say because I’m still trying to figure out the new issues that I’m dealing without. So that will be an update for another time. Right now I’m feeling frustrated and run down by all the waiting and the lack of answers. In the meantime, I try to stay hopeful that those answers will come soon.

At times like these when emotions can get out of check. It’s a good time to stop for a second and take a look at the things that are going on inside. Kind of like when you take your car in for its regular yearly checkup! You have them check the oil, top-up fluids, and do any regular maintenance. With all of that, however, the mechanic goes a little bit further with the things he’s checking on. On the outside, everything might appear to be working fine. Until he digs a little bit deeper into the engine where they sometimes find those hard to diagnose problems.

Checking on how I’m doing emotionally is something that I know I can do a better job with. I have to be honest. Sometimes it’s just easier to push my emotions aside and say I’ll deal with everything later. Except for the fact that I often forget about the later part. Then I find things can build up over time and those small issues become a little bit bigger. In an effort to head that off today, I’m trying to deal with my emotions and tell you that I’ve been really frustrated lately. It would just be so easy if there was a switch to turn off all the negative thoughts that start invading a person’s mind when we go through things like these.

It’s like there’s this intense chess match going on in my head between positive and negative. All I can do is hand everything over to God. On more than one occasion He’s helped me get through some pretty tough times. Once again this is another area that I could do a better job with. I know that I can put my trust in God’s hands to help me with anything! However, sometimes the things going on around me cause me to get distracted and I forget to have that simple conversation with Him. It isn’t difficult! Yet we get so caught up in the day to day that we forget or make excuses for why we don’t.

Slowing myself down for a minute and grounding myself in what I know is true and can help me the most is what I need right now. If there’s any message at all its that I need to have that conversation with God and to ask Him to help me with any of the frustration that I might be having a hard time with. I know this post doesn’t have a lot to it but I’m just taking the opportunity to share with all of you how I’m feeling inside. A simple message is sometimes the best!

Finding Joy and Happiness Through Christmas

In my efforts to stay ahead of the game I’m back at it trying to keep up with the writing. Is it just me or did the Christmas season this year seem to really creep up on us? Today we have the Christmas music on in our house, as we busily work away decorating and putting up the tree. This has to be my favorite time of the year by far! When our kids finish school for the break we pack ourselves up and move out to our cottage at the lake. Christmas for us is all about spending time with our family. Its also a time to just slow the pace down and take care of myself.
There are so many “great” memories associated with this season for me both old and new. Everything from different family traditions to the amazing smells that fill our houses. I think to some degree we all turn into kids again at Christmas. We can’t wait to watch the classics like “Rudolph” or “Santa Claus is Coming To Town” with the family. It seems like just yesterday that I was listening to the radio reports of the Santa Tracker as we anticipated his arrival from the North Pole! There’s just something so crazy special about the build up leading up to Christmas morning whether your a child or not. 
All of these memories with family that we are creating both past and present, help in a season that can sometimes be very difficult to get through. Most people don’t understand the affect that chronic illness has on a person around this time of the year. Pain levels increase and mental health can become a struggle creating challenges that individuals have to work themselves through. Sometimes I think those challenges that we face take center stage, and we forget about all the good things we still have in our lives. Family and all those special moments we spend together at Christmas are at the core of all that!                    
One Christmas that sticks out in particular involves my grandmother and a flaming roast. I was too young at the time to remember all the details but as story goes she was carrying Christmas dinner to the table which involved flaming brandy. She was getting older and so she wasn’t as steady anymore. As she walked to the table the tray tilted, causing flaming brandy to drip off onto the carpet. What I understand was that there was a trail of burn marks left behind what could have turned out to be much more serious. It seems like every year without fail, the story about my grandmother almost torching the house comes up!
Not all of the memories are as crazy as that one though. It was the simple things like having breakfast together as a family Christmas morning.  Dad and one of my sisters would have a contest every year as to who could drag breakfast out the longest. Dad would take an hour sipping away at his coffee and my sister would take the same amount of time to eat a sausage or whatever the food of choice was.The rest of us would sit there waiting impatiently to get to the presents. Even something like having those Christmas crackers with the crazy little hats that you would wear at dinner were a must at our house. Why? Because it was a tradition and it wasn’t Christmas without them on the table. 
As an adult I can’t help but laugh thinking about the good times spent over the holidays with my wife’s family. We would awake to my father in-law slowly turning up the song “White Christmas” at the crack of dawn! Every so often he would turn it up until we couldn’t take it anymore! The list of goes on and on but there are two common denominators with all of these great moments. They involve family and that they bring a smile to my face time and time again. Without a doubt things are a bit different these days but it doesn’t mean that everything about the Christmas season has to be bad.
The other thing I want you to think about is why we celebrate Christmas? The whole reason that we celebrate at this time of the year is because of the birth of Jesus! We get to remember the one gift that we so seriously need to be thankful for. Without Him I’m not the person I am today.   
So I encourage you to look at things with a different perspective. One that focuses on the positive and the good things that surround you! 



Hi everyone! I know its been a while since my last post and so I figured I better get something up. That’s if any of you are still reading this blog! Today is really just an update on what has been going on. In Sept things were busy with a couple of speaking engagements and a week-long trip to Ottawa involving advocacy work. While in Ottawa for that work an opportunity arose to speak with representatives from both the Liberal and Conservative Governments in regards to Bill C-81 the Accessible Canada Act. This was a real privilege to take part in and I had to ask a lot extra of myself in order to do it.
In October I started experiencing a really bad spike in pain which ended up with me making a visit to the hospital. I have managed to get the pain under control however am still dealing with some unanswered questions. Pushing forward and not wanting this setback to derail me, in mid Oct I was asked to speak at a conference in Montreal. I was given the opportunity to share my story with researchers from the Society for Medical Decision Making. Another opportunity that you don’t get every day, and one in which I got to share on behalf of the patient/advocate with researchers from across North America.
After sharing my story a researcher attending the conference pulled me aside. She told me that the highlight to her week was listening to my story, and that it opened her eyes to just how much rare disease affects an individual and their family. Then she thanked me for helping her to see things from a different perspective, and that this would change the way that she would do her research moving forward. At moments like these it doesn’t matter how many individuals are at the conference! Being able to impact just one person in the way that I did make it all worthwhile.
Arriving home from Montreal and with commitments out of the way I could now spend more time on self-care. A good thing because dealing with my health right now has to be my focus. At the moment I am undergoing different tests to figure out why my pain is spiking so much as of late. It all gets to be so much at times but you do your best to pull out anything positive you can. You will see in one of my next posts, that a great deal of positive can result from a these trials we face.
I’ve moved past the point of allowing anger, fear, or any of the negative that tries to creep in. In the thirteen years since diagnosis when it comes to research, treatments, or even cures there’s been very little changed with CRPS. Yet this tends to be where people fighting this disease get stuck and spin their wheels. People diagnosed get paralyzed in fear and start to feel helpless because of the uncertainty of so many different things.This is an area in my life where God has really broken down walls and not only fills me with hope but also helped me to keep moving forward with my life.
I’m not willing to let life pass me by! CRPS can throw everything it has at me but every time I’ll get up and fight stronger and harder never giving up. I guess in a lot of ways you can compare crps to the likes of learning how to ride a bike for the very first time. At times you are going to fall off, and so you dust yourself off and get right back on the bike.The hard part is in telling yourself to get back on. For me personally God is the one who lifts me back up every time I fall off, encouraging me to keep going and move forward with my life.
Like I said before there really is no message in today’s post. Although if you read between the lines maybe there is one I don’t know. What I will say is this. We know that as each of us walks through our own personal journey’s, that we might come up against some really tough situations. Right! It’s in my own personal opinion that we need to see them as opportunities to learn and grow from them. Even if that means not understanding the why’s of a given situation! God has really helped me to strengthen this area of my life. Empowering me to use those obstacles or tough times that I go through in a number of positive ways.
Not everything about this diagnosis has to be a bad thing. The person I have become as a result of being sick would require me to write an entire chapter of a book in order to explain. Yes chronic illness has radically changed my life along with the rest of my family. What I am choosing to see however are all the ways in which it has had a positive impact on my life!



Where’s Your Frame of Mind?

Things have been a blur the past few weeks because its been so busy! The month of June is one of those months where you both love it and hate it! With the school year coming to an end we have all the usual year end things happening and at the same time we can’t wait for summer holidays to start. Just get me through the month and all will be good. Throw in the tail end of our cottage build and finding time to practice self care has been really hard. I just have to keep telling myself I’m almost there!

I’m going to be honest with you and tell you that today I’m not doing so hot, and doing everything I can to fight off pain and keep myself functioning. Sometimes I think that this is when I do my best writing however because it helps me tap into the reality of what I deal with every day! I have always tried to live life with a chronic illness with a positive attitude, to be an example to those around me that life is still great in so many ways!  That will never change! I promised myself one thing when all of this started and that was to make a difference in other peoples lives! To learn as much as I can about CRPS and take that information to as many people as possible, being a voice in the process to those affected by this illness!

Sometimes this disease gets the best of you and it takes nothing to get mad at it! Why? Quite simply because every single day it reminds you that its there and that its trying to steal from you. The key however is that I won’t let it. Even on days like today where I’m having a bad day with pain, I focus on being positive and not letting it steal from me. That’s where surrounding myself with people who are positive and help me to focus on the good things is so important. I can’t stress that enough because it can be so much easier to pick out all the bad stuff that’s going on. I try and look at all the good things I have in my life like my faith, family, or circle of amazing advocates that I have around me. They’re always there to pick me up when things get really frustrating and when I want to naturally go to that negative place!

I’ve also said it a million times and I’ll say it again and again God is the single most positive influence through all of this. When nobody else can be there in those really hard times for me He can be! I’ve said a lot of prayers through this journey and will continue because I know He hears them all. When things seem impossible at various times He makes them all very possible. Too many times I didn’t have the answers or the obstacles that were in front of me seemed just too difficult to get passed! However every time I ask God for help a path or a door opens for me to get through or that answer becomes quite clear. That isn’t chance or something random that happens. That’s God answering prayer!

Some of my fellow advocates have gone through journey’s that seem just too unbelievable to be true! I don’t see them that way at all. Often some of those stories have brought people really close to death. I look at them and see a testimony that a person has and the power to speak into someone else’s life. This again is God working through a person and using that person in a certain way. I know talking about faith isn’t very easy for some people but for me it is because I believe in the things that He has done and is doing in my life. I have experienced first hand the way that He works in my life and through others. So when people tell me that they are all alone I tell them that your never alone because the truth is that you aren’t!

I always tell people that even though I’m going through all of this every second of every day I couldn’t feel stronger on the inside. Again I believe that this is something that God has placed within me in that He has enabled me to face or handle anything! There are days like today where its a struggle and that the pain is intense, but God never said that there weren’t going to be hard days or ones in which we don’t have to face adversity!

You Have The Power To Create Change!

Its been a rough go lately dealing with extra pain but somehow I manage to keep moving forward! A few weeks ago I traveled down to Huntington Beach to attend the Global Genes Rare Disease Summit. The stress of the travel was hard on my body and although I had to fight a lot of extra pain it was well worth it. There’s a trade off that comes with living a chronic life and I know there are others of you out there that understand what I’m talking about. Its all a part of me moving forward with my life and not allowing your illness to take all control!

I arrived home from the Summit changed but in a really good way. When your sitting beside a person who is one of only five people in the U.S. that has a rare form of cancer things are suddenly put into perspective. There was unique story after unique story each one impacting me in a different way. It was impossible to take away just one thing! If I felt inspired to do something about CRPS before, I left feeling as if I had to do all that much more! When I looked at the work that some people had been doing to raise awareness for their particular illnesses, I had to ask myself what am I really doing? At the end of the weekend we all went back home having gained 500 friends and a wealth of knowledge to take back to our communities.

I really feel I was able to make some strong connections and tap into some resources that will be useful here in my own community and province. Although its hard at the best of times to battle on with chronic illness I believe God gives us an abundance of strength when we need it the most, never giving us more than we can handle. With that being said as I left the conference knowing that I needed to be stronger in my advocacy efforts I came to the conclusion that no matter what I face or take on, God will provide in every way I need Him to along the way. I don’t want to be that person who says “I can’t” just because the path in front of me looks too difficult. I need to remember that God is guiding this walk and that when I’m lacking clarity or vision that I’m to look towards Him.

As I prepare to have the first ever CRPS Awareness day here for the Province of Saskatchewan I can feel my legs begin to tremble just at the thought of having to put this one day event on. Some of the people coming to this event hold important positions within our community and even our province. So sometimes I question my qualifications or I tell myself I’m way out of my league when it comes to taking this on. However nothing could be further from the truth. My qualifications speak for themselves having lived this illness for the past ten years! I need push forward because I have a testimony within my story that might just help one person find the care they need, or cause one Dr. to stop and think about how they diagnose and treat a patient. It might even be that one person from our government who comes to the event and is impacted. Leading them to say that we need to work on policy and legislation. Let me be very clear! All I’m saying is that by standing still I won’t create change!

Fast forward two weeks because this post was suppose to be up already but there’s just been too much going on and not enough time to do everything! CRPS Awareness Day went ahead this week and was a huge success! I’m not going to lie when I say I was a little worried that I wasn’t going to fill seats for my key note speaker but we were at full capacity and I think a few people other than patients walked away better informed of what CRPS is. The next day I was asked to speak at another conference and share my story with a group from within our health district. As much as I was nervous about getting up and doing it I knew I had to because we need to spread the word and make people listen.

Its not about being qualified! Stories bring with them power to change, whether it be my story or your story or someone else’s! It’s only when we move that we make a difference but you have to ask yourself are you willing to do it? Through sharing my story and all that has been thrown at me over the last ten years it is my hope that I will make a difference. All I can do is hope and leave the rest up to God!