I've realized my being quiet and shutting down during the difficult portions of this year allowed me to hide, but really should have been a teaching moment for me to give back. I should have allowed my brutal situation to be seen a little more, even the rough emotional moments. Psoriatic Arthritis and Enteropathic Arthritis are not pretty diseases. The things I share are often my undying spirit in the face of this disease, my blind luck to push forward in the face of adversity, and my love of running. To paint a real picture I need to be more open even when the struggle is real. If I only show half the canvas I'm not giving the full picture to the public that is necessary for awareness. The "Memo to Me" event was a great place to hammer this resolution home.
Lori-Ann Holbrook was the speaker at this event, and she was great! She is a well known blogger in the Psoriasis world and volunteers like me as a mentor for the National Psoriasis Foundation. She is also active in the forums on Facebook that I am in as well. Meeting her was amazing she's cheery, bubbly, and a great advocate for those with our disease. She's truly learned to embrace living life to the fullest with a disease, not suffering from a disease.
Lori-Ann's talk to us was about how to find our voices and be a better driver of awareness. Psoriatic Disease sadly is very misunderstood among the public. We have a great chance to change that by telling and sharing our stories. I really needed that and to hear how important my story could be. Awareness brings funds, and funds will help us find a cure.
The second part of the event we were able to talk on video about the things we would go back and tell our newly diagnosed selves. This was really great, I actually spent a few days considering the four questions that we were asked to answer and I felt I gave good honest answers. I hope that my answers are featured. I hope they will help someone else battling this disease be kinder to themselves, and love their self more. I hope that they will see my mission statement "Live a Big Life in the Face of Adversity" and go out to chase their dreams living fully with a disease.
The four questions we answered were really great to think about so I want to share them here for all those fighting battles to consider:
1. What is one piece of advice you'd tell your younger self about living with this condition?
2. Looking back, is there anything you wish you had known sooner or done differently?
3. What has been the greatest challenge you've had to face with this condition?
4. How has living with this condition changed you in ways you didn't expect?
I think the best part of this event was how small it was. I know they wanted a better turn out but I really loved the intimacy. It allowed everyone to really open up and talk about their stories. Sharing among fellow spoonies is an amazing experience. To hammer this spoonie love home I was able to drive in with my friend Deeanne who also has PsA, and it was great to have spoonie time with her. Overall I feel like this event was great for my personal morale, my advocacy mission, and my spirit after the last several months I've had. It really helped me see my personal mission better. I am glad I made time to meet Lori-Ann, a lady I hope I'll be able to call a friend for a long time to come.
If you are facing your own battle take the time to check out health central and see if they can help you find your own voice to help others. For more information on their campaigns check out www.healthcentral.com . Everyone of us is a story in the making, and our story has the power to help another through theirs.
Captain Angry Bones
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