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.
While the last post is fresh in my mind I wanted to write part two. Before I get started though I just wanted to say everything in this post is of my own opinion. I’m excited for today’s post because the whole area of good tasting food is important to me! I like food! One of the hardest parts of making all of these changes to me was not knowing what the taste and texture of everything was going to be like. Whatever your indulgences may be when your making these types of changes in eating habits, its hard because in your brain is stamped “tastes good” and for the most part nothing else! Am I ever going to be able to eat that yummy desert again? For all you chocolate lovers out there take a look at the desert I have pictured here! I’m telling you they taste better than peanut butter cups themselves! Why did I start with something sweet? I wanted you to be able to identify with something that really tastes good and know that you “CAN” have good tasting and healthy.
Like I mentioned in the last post it takes a little work to find things you will like. I also told you that it takes some experimental food nights here in my home. Especially when you have two young kids who don’t fully understand the whole healthy eating thing! For the most part they are very willing to try healthy ways of eating but what kid doesn’t still want that loaded hamburger or piece of pizza when it’s offered to them. So when you put something like a Sweet Potato Veggie Burger in front of them (which we haven’t done yet) it’s often met with a “this looks interesting” or “is this healthy” response when they come to the table. Sometimes we are truly surprised though by their reaction after they take a bite! For the record I haven’t tried this burger yet but it might just have to be put on the menu soon! I’m envisioning an experimental food night in the near future. In order to find those foods you like you have to be willing to be a bit adventurous. This burger is largely made of chick-peas and sweet potatoes and so I want to look at the benefit those two ingredients have for those of us dealing with chronic illness. Sweet potatoes are an excellent source of vitamin A which is a powerful antioxidant and plays a huge role in your neurological function. They are also high in Vitamin B5 B6 which helps with stress and anxiety, respiratory disorders, and heart problems. The chickpeas in the recipe are an excellent source of protein. They also help with controlling our blood sugar, improving digestion, and help protect against cancer and heart disease.
Today is really about looking at a few recipes and taking a look at how making some simple changes with your eating can really impact your life and your fight against chronic illness. For those of you who like tea I wanted to talk about a version of a Bullet Proof Tea that is really good for you. It uses the combination of organic tea, pumpkin spice, and apple cider vinegar. The pumpkin spice contains four powerful spices (cinnamon, nutmeg, ginger, and cloves) that help with things such as insulin, cognitive improvement, metabolism, and others. I would get into all the benefits but this would take a post on its own to explain all the different benefits that each ingredient has. If you want the recipe or your interested in what this tea is all about then I would suggest you check out this link https://www.youtube.com/watch?v=1jH05oDd3Hw to Thomas DeLauer and his version of the tea.
What I’m trying to say is be smart about how you are eating, and look at what is in the food and how it might help with your particular diagnosis. It really is a science I’m beginning to figure out! It doesn’t guarantee that I will see change in my symptoms but what it does do is ensure that I am doing all I can in trying to facilitate that change to better my situation. As I learn more and more about how the foods are grown, what is in that food, and how they are prepared, more and more is making sense to me. I urge you to watch some of the food documentaries out there because they’ll open your eyes! In a world where everything is now processed for convenience we are seeing chemicals of all kinds being put into our foods and I can’t help but think that they play a huge part in some of these autoimmune diseases we are seeing diagnosed today.
Does all of this mean that I don’t occasionally go out and indulge? Of course I do! What’s funny however is that now that I’ve made some changes when I do eat something that isn’t overly healthy my body notices it right away. That bag of Doritos might taste good initially but soon after it begins to catch up with my stomach! I’ve found healthier options that I quite enjoy snacking on and know they’re better for me. Here’s a food fact for you! Did you know that your taste buds are being trained to like those chips or that favorite snack that you enjoy eating! That’s right the chemicals that are found in foods are taking you back again over and over to some of those foods that you like to snack on. It’s amazing how the food industry will go to all kinds of costs just to get people addicted to their products. Going into the food industry is a whole different post however. I don’t want to get off track however that’s maybe for another post. What I’m saying is that with a bit of researching and experimenting it is possible to eat foods that taste really good that are extremely healthy. What do you have to lose in making some smart changes in the way you eat? Nothing! Only benefits will await you!
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!
Hi everyone! Yes I’m still here although you’d never know it with how frequently I’ve been writing! I’ve been trying to get to posting but things are crazy right now and I’m trying to stretch myself in ten different directions. Never in a million years did I think that my advocacy efforts would take off in this way but they are. In a couple of weeks we will be holding CRPS Awareness Day(Nov.2) again and I’m happy to say that after only one year we are finally making a impact. Its been a really long road to get to this point but I’m positive that we are taking baby steps to create change!
As usual my health has been up and down one minute I feel good and the next I feel like I’ve been hit by a train! To give you all an update I’ve been dealing with a lot of extra pain in my neck and back as of late that’s been setting off flare ups with my CRPS. I’m working with my neurologist and team of care givers to figure all of this out. We don’t know a lot at this point however I am undergoing some testing. For the time being I’m putting all the tools I use to manage this illness into place in order to help me deal with the pain. With any luck I won’t need more surgery down the road. All I can really do at this point is pray and trust that God gives me the answers.
There’s no use in letting all of this drag me down because that’s not the way I live my life! I’m not sure if you ever truly wrap your head around everything that happens with a diagnosis of CRPS. God can however so I just give Him all the hard stuff to figure out! Yup this disease and everything it puts you through sucks! Without a doubt it will test you more than you ever thought possible! Sometimes however life doesn’t play by the rules and there isn’t much you can do about that. In a past post I said that living with CRPS was like climbing Mount Everest, you encounter storm after storm and at times trying to make it to the summit seems pretty much impossible. In my head I kept getting stuck halfway up the mountain as I was battered by storm after storm. For the longest time I felt as if I was pinned down by these storms as one after the other tried to knock me off the side of the mountain.
Honestly I really feel as if the weather has cleared and now I can keep climbing to get to the summit but its going to take work and determination to get myself there. For all I know there’s another storm around the corner. The will to push on has to come from within and that is something that can only come from me or you! When you find yourself up against storm after storm it can be easy just to turn around heading back down the mountain in defeat!
I know this message might seem a bit repetitive but I can’t stress enough about how much “you” the person dealing with chronic illness play a roll in getting better! You might be saying to yourself right now “but I can’t get better because I have no cure” however I don’t believe for a minute that you can’t. So why is it that there is no cure for CRPS yet I can feel so much better compared to when all of this began? Without a doubt the main reason is because I’ve asked for God’s help to navigate me through all of this. There were storms that I had to weather and it would have been impossible to get through them without His guidance. Did it mean that it made the storm easy to get though? No! Some of those storms have been the toughest things I’ve ever had to ride out in my life. What you need to take away is that God often has us walk through things like this to build strength or courage, and to learn certain things about ourselves.
I guess my question to you is this! Are you willing to do the work it takes to continue the journey and reach the top? Or are you going to turn and head back down the mountain? Its a hard place to be in and trust me when I say that I understand the fear of being stuck and all alone on the side of that mountain. Although you really aren’t alone because God hears your every thought! You just have to ask yourself are you willing to receive the help? I guarantee that He will help you on that climb but what I can’t guarantee is what that path might look like. So are you confused yet?
What I’m trying to say is that I can’t tell you what the rest of your journey is going to look like. You might have to deal with some stuff or go through a few more storms because God doesn’t tell us that everything is going to be easy all the time. What I can tell you is that a peace and strength has been restored in my life that I can’t even begin to understand! All you have to do is ask!
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!