I promised myself yesterday that I wouldn’t let weeks go bye before I put up another post! Look at me! I’m trying to get back into my writing but with two busy kids and living a chronic life it’s not the easiest thing to do in this season of my life. It’s hard to believe but I’ve been writing this blog now for seven years! It seems like just yesterday that I was writing from a place of uncertainty when I was first diagnosed. Without a doubt the last ten years has been filled with some pretty emotional stories! This last few weeks has brought all those emotions flooding back! On Nov. 2 when I hosted CRPS Awareness Day I saw faces in the auditorium that almost felt as if they were a reflection of mine back when I was diagnosed. I could see the anger and the fear in some of the patients eyes, and I could hear uncertainty in their voices as they spoke. As I stood in front of those patients I reminded them that “your going to get through this” as hard as it might be right now! I told them not to give up hope!
As I spoke with various people diagnosed with CRPS throughout the day, one of the things that came up over and over was how hard their diagnosis has been on the family as a whole. An illness like CRPS has a huge impact on how the family functions and it adds even more stress to your relationships. Sometimes we don’t stop for a minute to think about how chronic illness affects them. I have a wife who has sits back and watches every day play out in front of her with there being very little she can do to help me. What support groups are there for her? None! My children being kids would like nothing more than to be able to run up to dad in the morning and jump on me or do the usual things they do with their parents. They can’t! Who explains to the child why all of this has to be this way? The parents! Fortunately God has given a lot of wisdom and understanding to manage all of this.
Family life is a bit different when your living a chronic life, and has taught me to how to have grace for others in the family who have to deal with me being ill. God helps us navigate our way through it as a family. Most of the time we talk out loud about challenges we face and work on how we can make things better. It’s not to say that things are easy all the time because they aren’t. Often there are times of misunderstanding and it takes a whole lot of listening and explaining of things to each other in order to work through the challenges we face. Now I don’t want to paint a negative picture of what family life is like because if anything in a lot of ways this illness has made our family stronger. I’m just saying that an illness like CRPS changes how you go about every day life. On the days that my wife is having a tough day I try to be there just as she tries to be there for me on my bad days! Am I perfect and there for her on every one of those days? Not at all! This is what I’m talking about in that it isn’t easy, that there’s a lot of give and take in order to support one another in the ways that we need to! There are a lot of days where I have to humble myself to tell my kids “sorry that daddy was a grouch today, the pain got the best of me” in order to help them understand why dad is acting the way that he does!
Its not easy to explain every aspect of how family life changes with a chronic illness because it can vary so much from family to family. What you really need to know though is that it affects the interactions and relationships between family members! There are lots of days that I want to blame my illness for everything and how its affected our family but what good would that do. What I really need to do is focus on making those relationships and interactions the best I can within the peramiters of my illness. Fostering strong relationships and interacting can be tougher however and takes a bit more effort when your dealing with an illness like this. So as a family we’ve had to put our heads together to figure out the best way to do that! We have relied heavily on asking God for wisdom on how to handle this.
So unless there is a cure for CRPS then trying to figure out how to manage my illness with having a great family life will always be a balancing act! So it means being aware of how it can affect our family and not allowing it to have a negative affect on us. We need to keep working hard and to see only the positives of how it has actually brought us closer together as a family.
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!
Have you ever had one of those moments where something really profound strikes you out of the blue. Today has been one of those days and it happened as I was listening to a podcast I listen to on a regular basis. The person speaking was sharing a story about a time he went whitewater rafting with his wife. The trip started as any rafting adventure would but as they headed down river the raft they were in flipped and all kinds of chaos ensued. He continues on with the story talking about how they came within inches of their death, as they struggled to reach shore safely. After getting to shore they managed to regroup and find the raft they had all been tossed out of.
After everything that had transpired the last thing he wanted to do was get back into that raft and continue down the river, yet it was the only option because there was no other way out. He offered to pay the guide to have a helicopter fly in and pick them up but the canyon walls were too steep! There was no other way of walking out until they got several miles down river, and they had to face some very nasty rapids called the Devil’s Mouth! Facing no other choice they got back into the raft and continued down river.
Through my ten years in living with CRPS I have come to realize that sometimes this illness doesn’t give you a choice of what you have to face. So instead of going around the storm we have to go right through the eye of it. It takes every ounce of strength to tell yourself that your going to be alright, and not to let fear make the decisions for you! It takes faith and believing in yourself even though you may not understand everything that is happening or might happen down the road. I like to compare it to a storm you see coming in the distance while sailing at sea. The storm is massive and all you can see are clouds and swirling seas as far as the eye can see. There isn’t time to change course and all you can do is head straight into it. At that point you face a choice! Either let the storm have its way with your boat and face drowning, or take on what’s coming at you with a strength and determination to come out the other side.
As I continued to listen to this podcast I could really identify with the things he was saying. A lot of what I’m walking through with my CRPS isn’t a choice but I “can” choose how I can take it on and not let it define who I am and what I do. There are some days where the illness that you face is going to kick you in the butt and your confidence will be taken down a few notches. You will experience things that scare you or cause you to question and doubt your abilities! The question is do you have faith and believe in yourself, and that you can steer your ship through the storm? Are you just sitting there in the corner of the wheelhouse huddled up hoping that you get through everything, or are you actively trying to navigate and steer that ship through?
This takes me back to the podcast I was listening to where the husband and wife were facing the daunting task of getting through the Devil’s Mouth rapids. It was either choose to believe in their ability to do what the guide was needing them to do to get through the rapids, or let the current push the raft into the rapids with disastrous results. The rudder had snapped off the raft in the first flip and it was up to them to steer the raft where it needed to go. Their mentality had to change and from that point forward they had to believe in themselves, and that they were capable of guiding this raft where it needed to go. After many fearful moments they eventually got through the rapids and into the calm part of the river. It took doing the things they never thought they could in order to get themselves to safety.
At the end of the podcast I took some time to reflect on how this story related to my life with chronic illness. In that time of reflection I came to a conclusion that I have two choices. One is that I can either choose to try and push the limits of my abilities and believe that I can make choices that will help me excel in life in spite of my illness. In other words can I navigate the storm and sail into calm waters. Or choice number two is do I let the powerful storm that’s swirling all around me knock me out of the ship and let the ocean swallow me up. So what I mean is do I let this illness consume me and change who I am and what I am able to do with the rest of my life. What choice are you going to make?
“Do not let your illness define who you are or what you can do”
Have you ever had one of those moments where you were listening to something like your favorite podcast and something really profound strikes you. Well today that happened as I was listening to one of mine and I wanted to share it with you. The person speaking was sharing a story about whitewater rafting with his wife. As they headed down river the raft they were in flipped and all kinds of chaos ensued. The story carries on talking about how they came within inches of death however they eventually managed to reach shore safely.
After everything that transpired the last thing he wanted to do was get back into that raft and continue down the river, yet it was the only option because there was no other way out. He offered to pay the guide to have a helicopter fly in and pick them up but the canyon walls were too steep! There was no other way of walking out until they got several miles down river, and they had to face some very nasty rapids called the Devil’s Mouth! Facing no other choice they got back into the raft and continued down river.
So often the only option one faces while fighting a chronic illness is to move straight forward and take on the illness in a battle that most of us would rather not fight. We see that difficult path that lies ahead, and it scares us to the extent that we don’t want to get back in the boat. It takes every ounce of strength to tell yourself that your going to be ok, and not to let the fear of the unknown make decisions for you! It takes faith and believing in yourself to continue your journey through whatever you might have to face. Sometimes those roadblocks that stand in our way are there for reasons unknown but you can’t let fear stop you from moving ahead. Sometimes you just have to say “I’m not going to let fear stop me from taking the next step” or from “accomplishing a goal”!
What I kept thinking through the entire podcast was I’m going through all of this for a reason! The pain, suffering, surgeries, and everything else CRPS throws at me! I know in my heart that I’m having to go through all of this so that something good will come out of all of it in the end. Even the ability to be able to speak into another person’s life is a powerful tool that I have been given. At the start of all of this I felt weak and beaten down. Now I feel as though I can take on anything life throws at me, regardless of what the challenge is. We don’t always see odvious things that are sittings right in front of us because we get too caught up in what’s happening in the now!
The message today is pretty simple sometimes we only have one choice and that’s to keep moving forward and face whatever lays ahead. You don’t know what might come out of your experiences!
Today I wanted to write something to encourage all of you out there who are struggling right now with your diagnosis. It might seem as if your world is spinning out of control and you might be asking yourself what do I do now! I want you to ask yourself a question. Are you happy? When I saw this video I said to myself its a perfect fit for what I want to talk about because it really says it all! Through all the pain, anger, and fear you need to get back up and fight. In some cases it isn’t going to be easy but with Gods guidance anything is possible! As the video says allow your heart to start beating again! Take baby steps one foot in front of the other and you can get there!
A word of advice! I really wanted to figure out where this journey was taking me but understand now I just needed to take the ride. I’ve turned that over to God and it’s brought peace in my life. I’m learning that bit by bit Gods greater plan is unfolding for my life. Sometimes the battle to get your mind and body back in the game, is tougher than facing the illness itself. When we get sick we just want everything to go back to the way it was. We tend to focus on the way things were and it can be really easy to become bitter and angry because we can’t have our old life back! Have you stopped to think for a minute that maybe this journey your on is for a reason. Maybe God has a plan for your life with bigger and better things but first you have to walk through some really tough things!
To often we listen to all those tiny voices that we hear in our head and it stops us from shifting the car from park into drive! I’m often reminded of all those episodes of the Flintstones I used to watch as a kid. If you don’t remember it then it was a cartoon set in the Stone Ages. The cars they drove in the cartoon were foot powered, and Barney and Fred would constantly forget to move their feet to get the car going. The running joke was why isn’t the car going anywhere. So the parallel I’m trying to make is that you have to keep your feet moving, if you want to stop yourself from getting stuck in the mud.
It might take some time to figure things out but don’t believe for a minute that your stuck where your at! You can’t be scared of running up against obstacles, or the times of frustration that you will run up against while on this journey. Look for the lesson from within each of those challenges, and if there is one learn and grow from them if you can. Some of those hard times that you face as you walk this journey might just change how you think about things from the past. Or it might open your eyes to new things that you never thought possible. Never in a million years did I see myself organizing a CRPS Awareness Day in our province and taking a roll in advocacy the way that I am. That being said I couldn’t feel better about what I am doing and the small roll I’m playing in trying to raise awareness. Advocacy has fueled a fire in me that wasn’t there before. Its fire to help people in whatever ways I can.
I’m not trying to tell you what to do in your situation. Absolutely not! I’m just trying to point out that there are things in my own life over the last ten years, that I’ve had to work on that I didn’t see coming. Ones that are taking me down a different road and as this happens I’m seeing happiness return. Do I know your situation? No! Can I relate to your situation? Yes! I do know that if I had stayed the way I was ten years ago then I wouldn’t be happy. I wouldn’t for a minute think of trying to tell another person what to do with there life and I never will. What I will do however is share my story with others and encourage. I really believe that when we support each other in these ways that we gain perspective. What you choose to do with that is your choice!
This is a simple message that I’ve given on more than one occasion but I think its important to keep giving. Its important because if I don’t remind myself personally every once in a while of these things, then I become stuck or my vision can become clouded. So I would hope that you see things in the same way. If your reading this today I hope it helps shed some light on questions you might have in your own journey!