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!
Hi everyone!I know it been a while since my last post but I’ve needed a bit of a break. With family and multiple advocacy commitments it hasn’t left a lot of time for writing. Yet its such a vital piece in helping me to express myself with all that rare disease has thrown my way! Some days it just feels like such a never-ending battle and I’m not going to lie its hard. I wish I could explain what its like to wake up in the morning ready to take on a new day, yet feel as if you’ve had the “crap” kicked out of you already and it’s not even 9am!
CRPS is so much more than just chronic pain! Yet we focus on the pain because that is what we know and hear about most of the time when it comes to this disease. Pain, swelling, and a fire burning that I wouldn’t wish upon anybody are most definitely the primary symptoms affecting me. However there are numerous other symptoms that people affected by CRPS and other chronic illnesses suffer from, and we don’t hear or do enough about them. Things like stress, social withdrawal, irritability, loss of interest, poor concentration, easy tears, lack of energy, sadness, and depression just to name a few. So let’s just say that the pain side(or the ones we hear about most of the time) are “Part A” and the invisible ones(not heard about of enough) are the ones that make up “Part B”.
We talk about one side when really both sides come as a package deal. The articles that I read in relation to my own diagnosis CRPS, always seem to address issues surrounding the pain but don’t seem to go much further than that. I can’t help but think that if we spent more time on educating about both sides, that we would be so much more effective in how we treat these illnesses. The best example I can think of to back this statement up, is the high suicide rate that comes along with CRPS. What are we doing to address it? I get that patients are desperate and being pushed to their limits because I’m one of them! In order to effectively treat and manage however we need to bring both sides of the puzzle together. This is often where the problem lies.
There is no one reason for how or why things breakdown. We as the patient have a voice and need to do our part in speaking up! If we want things to change then it starts with us. That means talking to our physicians, members of government, and others who have an active role in our healthcare system. We can’t just remain silent and hope that everything magically changes itself. To create change then we have to take an active part in trying to make that change happen!
On the other side of things lets look at the healthcare professional or physician who has been highly trained to perform that roll to the best of his abilities. I decided to look up the definition of physician and this is what I found!
A physician, medical practitioner, medical doctor, or simple doctor is a professional who practices medicine, which is concerned with promoting, maintaining, or restoring health through the study, diagnosis, and treatment of disease, injury, and other physical and mental impairments.
The use of this definition isn’t to slight physicians in any way but rather to illustrate the point I’m trying to make. Most of what I have dubbed “Part B” is contained within the last two words “mental impairments” however it isn’t confined to just those two words. Just like with the patient there are opportunities within a physicians profession that could help in bringing together the necessary pieces.
Look! I could find all kinds of reasons for why these problems exist but that’s not the point of me writing this. There’s a problem and we need to start working towards fixing it. I’m not the expert when it comes to policy or the healthcare system but I am an expert in my own body and what I have had to deal with over twelve years since diagnosis. I can bring value to any conversation that happens, and can be effective in trying to bring about change!
If I do my part then I don’t think I’m asking for too much when I ask others to do theirs. I get that chronic pain, rare disease, chronic illness, or however you want to label it are tough to diagnose and treat. The fact remains that there needs to be a basic level of care and treatment that one has to receive! When you speak to others within different health communities they will tell you that those basic needs aren’t being met for whatever reason. That’s what needs to change.
So I’ll end with this! There are some of you out there who have crazy powerful stories that need to be heard. Those stories can be a huge part of how we can influence the change that needs to happen around us. Look at your personal journey as a way that you can inspire, motivate, and empower those around you. A simple story can be so powerful! Don’t be that mouse that hides in the corner but the lion that is loud and can be heard for miles around.
This piece has been entered in the Patients Have Power Writing Contest run by Clara Health which is designed to raise awareness about clinical trials. I am passionate about this cause and hope it will raise the much needed awareness.
Up until a few days ago I was still trying to figure out just how to approach this piece. Although I have yet to take part in a clinical trial, I’ve spent the last year researching the different types and what might work best for my particular disease. Why? Research trials give patients such as me hope for cutting edge treatments and so much more. With not many options available and very little known about my disease, entering a trial can give me hope to not only find new treatments but to discover more about the disease. More so maybe the research that they do within trials will lead to preventing this disease.
In order to give you a little bit more of the history let me take you back twelve years. My wife and I had just arrived home from China with our 19 month old daughter. Life was good! We were starting our family and my wife and I had successful careers. My wife was now going to be a stay at home mom. Then all of a sudden the wheels ‘fell off the car’ and life started spinning out of control. After a simple surgery and a two-year journey of visiting at least 20 physicians and specialists, I had been diagnosed with Complex Regional Pain Syndrome a rare neuroautoimmune disease. The condition would leave me in such debilitating chronic pain day in and day out that it was a challenge just to function. My wife would end up going back to work as I was no longer able to work.
In the early years of my diagnosis I had lost all hope and my mental health was not in a good place. They call CRPS “the suicide disease” and I was finding out first hand why because the pain was so bad I didn’t know if I could go on. Thankfully I was able to work through things with help. I was finally able to find a care team that has been nothing short of amazing. To a degree you could say that my care team is my experience with the trial process. We have tried everything from experimental drugs to experimental therapies. What we’re lacking though is the research and the studies. Ten major surgeries later and trying the few treatments available to me and we are still no closer to finding a successful treatment plan.
What people need to understand is that the clinical trials are not only about new drugs for treatment! There are clinical research studies called observational studies that look at a patient’s disease or illness for genetic correlations or even improving upon current treatments. These are the type of trials that I am interested in because for years I have wondered if there is a genetic link to my disease. Or are there ways in which I can improve upon my current treatment plan.
Patients such as I hold a tremendous amount of value and knowledge to the researcher in those trials. What we are seeing is that the patient is starting to say that we need to be a part of the solution through the Patients Have Power movement. The patient who knows their own body and everything they are living through better than anyone is saying tap into our resources. Up until recently however I have had no power in helping to influence research. Companies such as Clara Health however are helping us to change that. Their belief in empowering the patient is giving the patient a voice. Patients do have power!