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!

 

 

 

 

Passion For Change

I’m back! Did you think I was never going to write another post? I needed to take a bit of a break from all the writing to take care of me! I’ve been trying to focus on getting better, and so I just needed to take a bit of the extra stress off my plate. Slowly I continue to get over my surgery. When I was at the neurosurgeons office a few weeks ago, he told me that I can expect it to take until Dec or Jan to recover. Good days are mixed with bad but when your fighting chronic illness and CRPS in particular that’s to be expected. I’m taking it one day at a time and doing only what my body wants me to do!

Its been a long road to this point and I’ve been doing a lot of thinking about the direction I’m headed and where I’m at in this very long journey. Recently I was asked to write my story by a friend Victoria in the UK at “Burning Nights” and all that I’ve had to go through in living a chronic life. If you get the chance go over and visit her blog at http://chronicpaincrps.com. As I wrote my story though I began to think of where this road is taking me and how I’m feeling at this very moment. Without a doubt I’ve been through some pretty tough times and gone down a few dark roads. Gods been there however to put me back on the track and keep steering this ship in right direction.

I know I’ve mentioned how I was feeling at the start of my diagnosis so I won’t get into that story. All I’m going to say is that I’m in a different place with my CRPS right now than I was back then. Even trying to push through this healing of my most recent surgery is different because I’m not letting the mental side of things distract me. I push forward and try to make the most out of what I can at this point in time. Something has shifted inside however and I really can’t put a thumb on it. I feel different filled with more fight and passion than I’ve ever had. Passion for what? Passion to bring about change! From the basics of how we live with chronic illness, to the perception of those of us living with it. I’d also like to see government make changes in how they support and care for those living a chronic life.  The only way to do that is to be a part of that change! Fighting through advocacy for my illness and other chronic illnesses.

It isn’t that I’m not still dealing with a full plate battling CRPS because believe me I am. Something however won’t stop tugging at my insides, telling me I need to do more and try and make more of a difference in fighting for CRPS and Chronic Pain. I wake up in the morning and go to bed at night thinking of ways in which I can help to make a difference. I am now involved with a Spoonie Comunity that not only supports each other but advocates to raise awareness and drive change! I have now made friends with people living with chronic illness from the all over the world who are fighting for the same cause. If you don’t know what the term Spoonie stands for its a group of people that live with chronic illness. Like I said at the beginning of this post something is shifting and I believe its only for the better. I also believe Gods hands are all over it!