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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!
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!