I don’t know why but it seems nowadays on my worst days are when I am compelled to write especially because I’ve typically been awake all night. I have been writing less and less often as my condition worsens and lately my breathing has played a large role in me being more lazy about my poetry and advocacy in general. That in addition to the fact I get a lot more gratitude for my behind the scenes work on vasculitis, cluster headache, and migraine. Work such as my volunteering for the V-PPRN’s Vascusitis Patient Advisory Council or V-PAC. We’re working to change the way people see our illness and how exactly data is being recorded. Together with this network I am playing a small but undeniable role in a shift in the way medical research is being done and for that I will never be more thankful to the Vasculitis Patient-Powered Research Network. In fact I hope to be at the International Symposium in Florida speaking about the new research network both as a patient partner and a participant explaining how this work benefits us all regardless of which kind of vasculitis we may suffer from. All I can hope is that when I do have the strength to write and work that others truly get something out of the experience, I can no longer stand idly by and just “be sick” I know I am capable of more than that so let us all band together and do what we can for finding relief for all sorts of chronic illness. We may all suffer differently but the key word there is suffering and a great deal of us don’t deserve the pain we endure.
Well whether you suffer from any illness at all or you’re just a benevolent person all it takes is a single dollar or posting around a few flyers to raise awareness to help someone like me. Especially all you young people there are slews of school and university events which pay it forwards to great causes why not show your classmates how to become a patient advocate or have a bake sale to benefit a particular charity whose work you enjoy. Some like me write a blog, others write a journal, and some keep it help in deep within their emotions, however you deal with your chronic illness please know keeping it private only hurts the community. You can help your entire community and take a few weeks to edit your writing into a short readable ebook perhaps 50 pages or less long. It’s a quick, short read and can be had cheap so make some good points and wallah you have some free original content to distribute or sell cheaply to fund some of your medical expenses.
I’m the type of advocate who enjoys pushing his comfort zone I learned that in high school in the performing arts that it’s a good skill to have. It helped a lot with my first public speaking event as I’m sure it will just make me improve in the future. I’ve never done one before but for the release of my next book I plan to do some leg work and set up signings, donate signed copies to charity auctions. and visit plenty of conferences with copies in hand. I always enjoy taking on new challenges and opportunities honestly thats what keeps me going during the worst times. If I didn’t have so many challenges in life I probably wouldn’t be typing to you right now in fact. As usual my next event will be Headache on the Hill in April this time so we shouldn’t freeze our butts off! I can’t wait to see my fellow advocates it’s like tight knit family meeting up again and you never know what opportunities may open themselves to you just from going to these events. Anyway I will keep advocating in one form or another until the day I die which may be relatively soon or far away with my diagnosis I’ll likely never truly know. All I can say right now is I may be headed back to the hospital to be admitted due to intractable vomiting, trouble breathing,problems eating, and having to go to the bathroom abnormally often not to mention 10/10 bodily and head pain that is uncontrolled. I sure hope this bout is over with soon and that I can see my psychologist again the awesome Dawn Buse.
-Hope you all have pain free and outgoing days ahead, your friend Michael.