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.
Happy New Year to everyone! I hope all of you had a relatively pain-free Christmas & New Years and are finding things alright as you ease back into routine. The holidays are always tough for us to get through but we do our best using all of our coping skills. Good thing I have such a supportive family that understands all of what comes with my chronic illness. Luckily we spent most of the Christmas break at the lake so it allows me the escape that I need in order to manage through the Christmas season. I wanted to put some form of a post up seeing as I’m well past due to put one up.
Today I thought it might be appropriate to talk about food which I don’t often talk about when it comes to chronic illness. At this time of the year a lot of our family gatherings center around food and so it only makes sense to talk about food in a post around this time of the year. Over the last couple of years we’ve been trying to make a real effort to look really closely at what we are putting into our bodies as a family. Our reasoning wasn’t only because of my health but for the entire family overall. As we (or should I say my wife) started researching more about the science behind everything it really made sense that we had to start making some changes in the foods we were eating! Not that we ate really badly before but because I don’t want to be consuming things that aren’t suppose to be in my body.
When you watch the documentaries and read all the books on what our food is supposed to contain and what it should be doing to properly fuel our bodies and what is really being produced and the end results of what really ends up on the shelf it scares you. It really makes one think what is this doing to my body! I owe my wife a lot because the countless hours she puts into the research and the preparation are endless. Eating healthy is work just as going to the exercising is, and if you want to see results then you need to do the hard work it takes in getting to your goals. Making all these positive changes had a whole other side to it with me however in that it could only help in trying to manage my disease. For someone such as myself who deals with CRPS and Osteoarthritis one of my symptoms is severe swelling, so introducing foods high in anti-inflammatories like spinach, kale, nuts (almonds and walnuts), turmeric, and blueberries into your diet only makes sense.
With no cure for CRPS and a limitation to what treatment options are available to me, I’m left to look for ways in which I can help myself. There are several ways in which we can help ourselves. However food is one of those obvious ones that people have complete control over. So why a food post now when it’s that time of the year when all people do is eat? I’d love to say that I have this great big theory behind why I wanted to write about food today but I really don’t. Its something I’m trying to be more conscious of but lets face it isn’t always easy. However I truly am noticing a difference in how I feel! Now I notice that when I break down and eat that chocolate bar once in a while that I don’t feel so good!
When you actually start seeing the benefits of eating well you don’t want to revert back to your old ways of eating. I’m not doing any crazy diets or anything like that just eating the way that we were intended to eat. We’ve become a society that would rather get all of our vitamins from a pill rather than the food that contains those vitamins! Now am I against vitamin pills? No I’m not! But I’d rather get them the way that I should. Again I have to give all the credit to my wife who is the one in my family that does all the cooking. She looks at ways that she can cook for us that will give us the maximum benefit! How did I ever get so lucky as to have such an amazing wife.
I just makes sense to ensure that we are doing everything in our power to control whatever factors we can when it comes to managing your illness. I can’t help but think that so many of these autoimmune diseases that are being diagnosed today have links to food. With all the chemicals that are being put in our food how can it not! The changes we’ve been making are smart ones like trying to get rid of white sugar, and replacing white flour with chick pea flour. We cut back on gluten and our biggest change would be getting rid of things that have preservatives. It’s really getting back to more of a plant-based diet. It might sound like these changes are simple but don’t be fooled because it takes work like I mentioned!
In my next post I’m going to get into things a little more in-depth. This is a one of two posts so you’ll have to check back in a week to read more about my food journey! See you all right back here!
Today’s been one of those days where you try with everything you have to get things done but it just doesn’t work out! I got three quarters of the way through writing today’s post when my computer decided it was going to crash. There’s a reason that we are suppose to “save draft” and its most frustrating when you abide by that golden rule and your computer doesn’t do what its suppose to do! It really sums up the type of day I’m having but what can I do but laugh. There would have been a day where I would have let all of that really bother me. Ok! So it still really bothers me!
The last few weeks have been pretty hectic as I get closer to hosting CRPS Awareness Day! Last minute details are falling into place and I’m trying to maintain my health and everything that’s going on there as well. Nothing new on that front except for the fact that the revolving door of doctors appointments continues. I’m very lucky however to have a team of health care professionals working with me that care and are working to figure things out. I can’t begin to explain how it feels knowing that they are there for me when I need them the most. They have never given up on me! I always consider myself very blessed to have a team like this because I know this isn’t always the case.
This week I wanted to bring you a message that’s a bit different! I want you to read this today thinking about how important it is to support others around you who might be sick. This week I got the opportunity to spend some time with someone else dealing with CRPS who I’ve been visiting with from time to time. He’s fairly new to his diagnosis (within the last two years) and so he’s having to process everything that’s going on within this life changing event! Clearly he’s having a tough time in dealing with everything, and so I’ve been trying to go and just be that support to let him know that someone is there for him. Its a hard time for not only him but the rest of his family. For me its a flashback to the beginning and it brings back a lot of emotions that I had to experience at that particular point in time.
Then there was the person I spent some time on the phone with this week who’s been living with CRPS for the past nine years. She lives in a very small town and there’s nobody around her for support. She’s been unable to find a doctor in her area that understands CRPS, and therefore its left her feeling frustrated and desperate for help. If that isn’t hard enough her family isn’t supportive making things all the more difficult. After a short conversation I told her I would ask my care team if they would contact her to see if there is anything they can do for her. I couldn’t offer a lot but the fact that someone was willing to listen and try and help gave her hope that she didn’t have before.
So why am I bringing up both of these individuals? Because just like the people I have in my life they need people that aren’t going to give up on them. Nobody should have to take on an illness such as CRPS or any other illness for that matter and be all alone. All this week I’ve had a word stuck in my head and that word is community! When you look up the definition of community it reads “a unified body of individuals” that come together. Isn’t that what we should be doing? Coming together and helping each other when we need it. Let me clarify what I mean. I’m not saying that we can be there in every circumstance or for every single person that we come across that’s in the same circumstance, nor am I saying that we don’t already support one another. What I am saying however is that we need to make the extra effort when opportunity presents itself, even if it means putting them in touch with someone else.
There is just something so powerful about community! When we’re there for one another a strong support system develops! I can’t say how important it is to have that! I live in a part of Canada where resources are minimal and support for one another is hard to find. So those friendships that develop take on a whole other level. That’s what I’m trying to get at! Its that one person who you reach out to that has nobody around them for support. Or the person who’s newly diagnosed and scared but doesn’t know what to do or who to turn to! Having walked through all of that it gives me a voice to speak into their lives. I can share my experiences and story to help them navigate their way.
So I’m going to ask you this one simple question. Have you reached out to someone around you that might be dealing with CRPS? If your part of a chronic illness community then I want you to think about what it is that makes being a part of that community so special. Take it one step further and think about those in the community your in. Were they welcoming, helpful, or supportive? Probably all of the above! Wouldn’t you want that for someone else? Some of you reading this understand exactly what I’m trying to say. Its a simple message but one that is so important and vital in us growing as a CRPS community. When we come together things start to happen!