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!

 

Together We Thrive!

Well after an exhausting weekend in Chicago at the HealtheVoices17 conference I came back with renewed vision and refreshed ready to get back into the trenches of advocacy! Did I ever leave? No you never stop! For the last four days I’ve met with advocates from all over the world! Yes we had advocates join us from as far as Australia, Taiwan, Argentina, Brazil, and United Arab Emirates at the conference. It was a pretty amazing group of people and I can’t tell you just how much they inspired me! The theme of the conference was “Together We Thrive” and I couldn’t have walked away this weekend without feeling more as if I now have this extended family in my world of advocacy.

Without a doubt the weekend was crazy powerful with so many amazing advocates from across different patient communities. Such a great opportunity to learn, grow, and support one another. The support started with Janssen US and the other sponsors who funded everything for all of the patient/advocates to be in Chicago for this conference. A huge thank-you for believing in us! To the TonicLC team I couldn’t have been more blown away by how great a job you did in putting on this #HealthEVoices17 conference. So often as a patient/advocate your efforts are largely unheard and you feel as though your that small fish in a very large ocean. It was refreshing for a change to know that our efforts were being recognized, and to hear companies like these say that “we were teaching them”!

To the new friends that I made and the ones I didn’t get as much time as I’d have liked to over the weekend, I thank you all for inspiring me in the ways that you did! I’m missing so many of you already but at the same time looking forward to working with you in the future. Its important to remember that “Together We Thrive” and so I encourage all of us to stay in touch with one another. As we all get back into the trenches and get back to advocating for our various causes remember that we are powerful together no matter what the cause. Don’t be afraid to reach out to those around you who inspired you and ask for their advice. At the same time make sure that you take those who are around you and raise them up! Encourage, motivate, and help to empower them in their own advocacy efforts.

At #HealthEVoices17 we were able to learn so much about the powerful tools that we have at our fingertips to aide us in our efforts. They are only powerful however if we put them into use! So I encourage each and every one of the 100+ advocates that were there over the weekend, to take what you were able to learn and apply it in the ways it will benefit your cause. We need to understand that partnering together is only going to make us stronger as patient/advocates. Before you do any of this however remember that self-care is your first priority. This was something that was front and centre at the conference! We were urged to make use of the quite room or take the opportunity to go back to our room and watch the live stream as we rested. Remember your a patient first and need to take care of yourself first before any of your advocacy efforts.

This was a weekend that had so many levels to it! Trying to pick out just one highlight is a really hard thing to do. On Fri night we had an “Open Mic Night” and all I can say is that you had to be there fully appreciate just how raw and real things got! What was suppose to end at around 9:30pm ended up going until 11:00pm! Its hard to describe the feeling but it was clear from day one that that no matter what you were dealing with, that you were part of this larger extended family that supported you and would be there for you in the future. We laughed together and shared experiences with one another, as well as having several moments where our emotions got the best of us producing the odd tear!

We can learn so much from one another as patient/advocates! Being able to speak to other advocates and the communities they belong to, as well as hear about the challenges they face is a great way to learn and grow with one another. It allowed us the opportunity to see if there were things in which we could add or change about our own efforts. Every moment right down to the meals together was pretty special! The entire weekend left me pretty speechless.

It really was an honour and a privilege to be asked to be a part of this conference this year. We walk away impacted and changed in so many ways!