Helping Yourself!

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!

 

Why do I Advocate!

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!

 

 

Growing the CRPS Community

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!

 

What Direction Are You Headed?

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!

How Do You Navigate Rare Disease?

Today’s been one of those days that finds me moving just a little bit slower, and feeling just a bit more pain than normal. Par for the course in a life that I’ve come to know and accept. Every day is a new adventure and like I tell so many of you, never expect your day to turn out the way you had planned it. I’m not trying to be negative in what I’m saying but I’m just being realistic as a person who’s living with CRPS! Today’s adventure is to sit down and try and maintain focus on putting together this post. With any luck I get this done!

When I sat down to write this post I had a completely different post in mind. At the same time I was thinking about another message that’s been nibbling at the back of my brain. It has to do with the whole area of how we handle having a rare disease. Yes it frustrates me to death that so many of us get lost in the shuffle and are often left to navigate our own way through it. This is something I find comes up over and over again with patients fighting rare disease, and won’t change unless we are helping in trying to facilitate change. Not only within my own disease but within other rare diseases as well. Desperation is pushing people to their extreme limits and it just comes out naturally in aggression and frustration. So often though that anger and frustration has a negative affect on how we handle living with our illness.

Although I completely understand why those feelings are coming out and have had to deal with them myself, we need to find ways to focus that anger in a positive constructive way. At the beginning of my diagnosis I was angry and wanted answers. So I expected that “all” physicians should be know what CRPS was, and that they should have been able to give me the answers I needed. They are doctors after all! At the time I had no compassion for physicians and that they don’t always have the answers. Clearly as times gone by I’ve discovered that there’s a need to educate and raise awareness! I discovered within myself that the anger that I held inside myself wasn’t going to get me anywhere, and that I needed to take a good hard look at how I was seeing and dealing with all of this. Instead of putting this giant blanket over “all physicians” and their understanding of my rare disease I needed to see it in a completely different way.

There was so much frustration and anger at the beginning that I couldn’t see what was right in front of me. The need to educate and work “with” the medical community and different government levels. It was very clear when I looked outside myself that I needed to change how I was approaching all of this. Why not put the time and energy into working with the physicians, members of government, and the research groups! There are great physicians and members of parliament or government who are willing to work with us and do know about the things we face. It’s a matter of finding those people and then teaming up with them to educate and create awareness. Am I saying not to get frustrated with that physician or member of government who doesn’t give you the time of day? Absolutely not! We are going to experience those emotions time and time again. The question is what are you doing to harness those emotions and then turn them into something positive?

So how do we flip all that anger and frustration around and create something good from it? Maybe it’s as simple as sharing your story. Our stories are a powerful tool for teaching and educating those around us what is going on with us both physically and emotionally not to mention creating awareness. In the last few years I’ve started sharing my story with medical students, nurses, and members of government. From that other members of the medical community and government have reached out to ask me to share my story. I’m saying all of this in order to get you to see that by simply sharing my story in various ways to different groups I’m making some kind of a difference. It’s a very simple yet powerful way to have a positive affect on bringing about change.

Another way would be to take part in things such as clinical trials and different research studies that will help those studying rare disease to find answers that might eventually lead to cures. There are all kinds of organizations and people that can aid us with research studies. At the same time there are certain rare diseases where there are opportunities for research because not enough is being done. Maybe there’s an opportunity for you to play a part in raising awareness for research. Whether it be getting involved somehow with the research itself, or maybe you get involved in a fundraising campaign of some type. There are so many ways that we can channel all of those frustrations that we face in living with rare disease. However it is a choice that each of us has to make! The question is what are you choosing to do?

For myself the choice is easy because I’m looking at the bigger picture of all this. This isn’t just about myself! I’m choosing to get involved in all the ways that I do because “all” of us need answers. I care about each and every one of you who are sick and only want to see you get better. The way we do that is by coming together as a patient body fighting together!