I was contacted by a local news paper. They had said they wanted to write about my story after seeing my gofundme. I have to admit at first I didn’t want to go public with my story.
Yet, when I put a little more thought into it I realized this was not just an opportunity for me to address CPP. It was also an time to talk about rare disease in the media.
I did the interview for the article back in June. The interviewer Adriane Chamberlan did research for a month and the article came out on the 26th of July.
You can find it here:
After the paper came out I received messages from local people and people on the main land. Many outraged as to how I do not have disability, many also experiencing a similar situation of being pushed aside in a sense.
I want the system to change. I don’t want people with rare diseases to slip through the cracks. Not receiving the help they need can be deadly.
I admit at times I skip days not taking my expensive meds. Ones I will be on for the rest of my life that total $300. I have used broken braces to try to hold my joints in place. I have also had to cut down on food. Due to emotional stress I ended up loosing 30 pounds, I weighed a hundred pounds.
The day the article came out I was contacted by a local talk radio station. I shared with them my experience. If you would like to listen to the Podcast I am at 33:45 so you will have to skip ahead a fair bit to listen to my 15 minute interview.
Here is the podcast of my interview with Pamela McCall. I did the best I could through my brain fog. Thank you so much to cfax for contacting me. Grateful, appreciative and hopeful always. I will never give up! I will continue to fight to the best of abilities.
I am grateful to both the Times Colonist and CFAX1070. Thank you so much for helping me voice my story.
Hopeful for change in the system always.
I remain hopeful always.