If it were May 2003
If it were May of 2003 at around 5pm I would be leaving work. I would have woken up early, taken a shower, and I would have driven 45 minutes to work to put in my 8-9 hours. I would have then driven 45 minutes home, stopping at Wawa on my way to grab a coffee. I would have already made plans for the upcoming weekend to hang with friends, family and soon enough, with my partner, Charlie. I would have walked unassisted during the whole day. I would not have been in pain. I would not have felt like I couldn’t keep my eyes open due to fatigue. Those were the days.
If it were May of 2003 and I had known it was virtually my last month of walking unassisted and without pain, I would have planned to take my vacation time and gone on a hiking trip or a week-long trip to the beach to enjoy the sun for the last time before my skin could no longer be exposed without almost immediate rashes, bumps and ultimately scars. I also would have tried to prepare myself and my family for what was about to happen. If only I had known . . . would that have made it easier on any of us? Probably not.
I often wonder if God or the “Creator,” (whatever you call him/her) had laid out my options for me, that (a) I could continue my life as it was and learn nothing and help no one but live free of pain and weakness or (b) an opportunity to learn so much and help so many but having to live in constant pain and weakness. What would I have chosen? I like to think I would have chosen to learn more and help others while living with the pain and most likely I would have chosen that. Does that then give me the right to complain or feel sorry for myself? Luckily, or I should say thankfully, we don’t get to make those types of decisions. If I hadn’t become ill and been forced to struggle with a broken healthcare system with overspecialization of doctors and greedy, heartless insurance companies, I would have missed a chance for unique life lessons about determination, trust, love, commitment, and an attitude of “I will not give up.”
With PolymyoWhat I plan to share my story, my experiences, my struggles and the lessons all of these have taught me. I also plan to share my thoughts and experiences on social topics, autoimmune disease, challenges of daily living and, through the muck, learning to live to smile.
The story I will share will be from many perspectives; my own, my parents, my partner, and maybe even our dogs. They all play such an important role in my life and in how I continue to fight when, at times, everything inside of me tells me to give up (on the really bad days). My story is about chronic illness, chronic pain, weakness and strength and change and hope. I am sincerely devoting myself to this in the hope someone, somewhere, may learn something sometime from all of this. I make you a promise now to be as positive as I can and try to keep out the negativity that tends to creep in, although sharing some of that may be just as helpful. It lets us know we are not alone and should not be ashamed of having such feelings; we are human, we are flawed. It just means we have to work that much harder to get to a place where we are thinking positively and making plans for the future.
Seven years ago, in May of 2003, is when my life (and the lives of my loved ones) was, for lack of a more appropriate phrase, flipped upside down. I will not pretend to remember the exact dates or even, at times, the exact months. So much of the beginning is a blur to me. I do remember key events and lessons I learned and with my family helping me fill in the holes, I hope to share as much as I can.
I hope you will join me on this journey. I have no idea where this will take me or you, but I can guarantee we will both learn something together. Let’s share our stories and lessons, take what is useful and leave the rest for someone else. I hope you will take time when you feel it’s needed to leave your comments and replies as I hope to learn from you.
As a side note, you do not have to be sick or in pain or even be struggling in life for this blog to potentially help you. You may meet someone in the near future that will need something we have shared here. Everyone can offer a piece of advice. We just have to be willing to listen and to learn.
One last thought . . . if you are one of those people that feel you must make me aware of my bad writing or grammar, you may do so, but I am sure someone has already beat you to it. I am not doing this to win a grammar award or to write a book; I am doing this to help me and hopefully you!
Until next time . . . smile!
Update: As of 2014, “Polymyowhat: Understanding Myositis” no longer exists. Rather, it has become “Myositis Support and Understanding” with an active, working, board of directors.
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