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!
Today has just been one of those really tough days, one of those emotional roller coaster days. It’s been a high pain day and the last thing I wanted to do was get out of bed. Actually let me go back to closer to 2am when the shooting burning pain intensified. Then again around 3am it decided to get a little angrier! If that wasn’t enough around 4am it decided to ramp things up even more. Just when it seemed as if it couldn’t get any worse last night it did! This is my norm however and so when things get this way all I can do is pray! I have to rely on God at all times and I won’t shy away from saying that.
This is just one of those days where I find myself chasing things around in my head, and trying to keep the negative at a distance! It’s not easy when it’s coming at you from every angle and your mental state is being taxed to its max! Chronic illness can wear you down there’s no doubt about that and nobody is immune to it. I can’t tell you how many times today I’ve been on the verge of my emotions getting the best of me. Yes that means that I wanted to cry! The frustration, pain, and lack of clarity or ability to spit out a three-letter word have been really bad. Sometimes these symptoms hit without notice and just when you think you’ve got a handle on them they rear their ugly head again.
Chronic illnesses are cyclical and to be able to manage things well I need to be able to break that cycle. Some of you may have noticed the lack of posts over the last little while. Part of that reason is because I just haven’t been able to put pen to paper to get my thoughts out. The other is that I have simply gotten away from using one of my tools that is important in managing my disease. After numerous attempts and lots of giving up I’m finally pushing through, and not giving in to a disease that has tried to rob me of so much! Have I let my frustrations get the best of me sometimes? Have I pushed too hard? Do I let negativity seep in and influence my actions? To all three of these questions I would have to answer yes!
Living with my illness will never be easy! Using my tools is a necessary part of life for now. Maybe that means today, instead of writing that complex message that I had stuck in my brain, I write something basic that helps me work through my emotions. So that’s what I’m doing! I’m getting back to grass-roots! Writing is more than just writing down a bunch of words to me. It’s a way for me to express what I’m going through daily or what’s going on deep within me as I live with CRPS. Furthermore, it allows me to look back and reflect on things and see in large just how far I have really come. Often I will look back through previous writing because it helps me gain perspective. It helps me to see that even though it feels like some days I’m getting nowhere, I really am making progresses and that there are good days in between.
This basic message is really about staying positive and focusing on being that way each and every day! If that means walking through a process that helps me get to where I need to be then that’s what I need to do. A life changing diagnosis without a doubt is going to rattle you sometimes but are you up to the task of navigating your way through it? There are only two answers to this question, yes or no! I know I am!
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!
Well last weekend we had CRPS Awareness Day and it was a huge success! It was a great way to kick off #Nervember. In case you didn’t realize November is CRPS Awareness month and we do everything in our power to try educate those around us about this disease! As I mentioned it was an extremely successful event but it’s taken the last week just to recover. Week two and I’m still trying to find my way back to normal! Now all this being said I don’t want to make it seem as though all this effort wasn’t worth it. Every bit of awareness I can raise is going to help us in the various areas we need to create change or in specific areas that need more awareness.
Often people ask me how can it be worth putting yourself through the flare ups that you go through as a result of pushing yourself to hard. Today I’m going to share with you the reason I do what I do in advocating for CRPS. I received an email today from a doctor here in the city that I live in. As I read through the email it thanked us for a great effort and evening full of education and awareness. Then I got to the last half of the email and almost fell over! It explained how they would be introducing curriculum to second year medical students about CRPS, and making changes to the chronic pain curriculum! This is huge! We need to be encouraged because it brings hope to those around us that if we raise our voices we can create change. You need to understand that no matter how big or small your efforts are that you are making a difference.
When I advocate for CRPS I think about all of the other people I know who are affected by this disease besides myself. They drive me to see beyond my own pain and to be a voice that advocates for change and breakthrough. Every patient should have a voice yet there are some who deal with so much pain that they are unable to express themselves. Those are the individuals that motivate me to keep raising the bar and speaking up for our cause. Even though I have to deal with all of what this illness throws at me I still have the ability to speak up and raise my voice.
The need for early diagnosis is another reason I’m so driven to advocate! The sooner you get diagnosed and start treating an individual with CRPS then the better the chances of reversing the symptoms. I was diagnosed so late (almost two years into the disease) that it makes trying to reverse the symptoms so very difficult. I will never say impossible but certainly it becomes more difficult when that amount of time has gone by. I want to share what happened to me not as a negative experience but one that educates and arms others with information I have gained in order for them to get a quicker diagnosis.
If we don’t understand or know what the disease is then how do we move forward with treatment and finding cures. There isn’t a single day that goes by where I don’t have to explain what the disease is at least once. Its exhausting and a little bit heartbreaking because it shows me that people still don’t know about CRPS. So when I see things like medical students having curriculum added or more people being educated it gives me hope and inspires me to make a difference! When funding for education and research are virtually non existent here in Canada then that tells me that I have to try harder in having my voice and ours as a community heard.
When people ask me how many people have CRPS in the province of Saskatchewan or in all of Canada, I answer them with the all to familiar answer of “I don’t know” out of frustration. If there is a number for here in Canada its hard to find! When you go online to search the disease your lucky if you come across a website that is current. Again another reason I want my voice along with so many others to be heard. If we just sit back and be complacent then we are never going to see any of this change. The patient voice has power but only when we speak up as a body who believe that we can bring about that change!
So I couldn’t think of a better way to end this post except to share with you two people in the U.S. who excel at being a voice for chronic awareness. Ken Taylor & Barby Ingle of International Pain Foundation who’s pictures for their #NERVEmber campaign you’ve been looking at through this post. I first met Barby at HealtheVoices17 in Chicago and the amount of passion and energy in her advocacy efforts amidst her own battle against multiple illnesses was infectious! I have met Ken only through the technology of computers but his energy and passion is equally infectious! These are two leaders that have a clear vision when it comes to advocacy and we need to have that same passion and desire. I encourage you to drop by their site and see not only what this months initiative is all about but to gain some inspiration into the work they do and what you yourself can get involved in when it comes to advocating!