This morning, as I was beginning my day doing what I do each morning, I was struck by a post I read directed to me on a facebook post. It was from a childhood friend that gave her version of love on a post I was tagged in. She told me “how strong” she thinks I am and it was “a shame I am so sick”. I want to scream and say its not a shame, it is life. It is just the path I get to walk. A shame would be to give up and roll over in life. Also by the way it is super hard to see myself as “sick”.
Maybe that is one mindset that is different for me then for others. Being chronically ill for more then a decade makes my perspective, attitude and outlook different from the inside of my body as I look out look then for those on the outside looking in. Most days my chronic illnesses (now I have 3 thanks to the first one, two more have joined the party in my body) don’t stop me much. Yes I hurt. I am sore. My fingers and hands don’t move the way yours do. When I simply walk down the street I pant and try to catch my breath. Walking up a flight of stairs is tough without a pause (at least one). My heart flutters strangely. I get charlie horses in my chest that feel like (but are NOT) a heart attack. Man those hurt!. I have red dots all over my face and body from the Scleroderma. No hair anymore right now, thanks to chemo. And what I am about to walk through to cure my main disease, Scleroderma, will be a challenging procedure.
Do I think I have it rough? NOPE! I sure don’t think I have it rough. I have a disease that was supposed to kill me but didn’t. I have already lived the most amazing 53 years on this planet both great stuff and tough stuff. It is all the pieces and parts that make up my one precious life. It reminds me of a saying I heard in 1985 I have never forgotten. A lady named Madonna said to me one day when I was bitching about breaking a fingernail or something equally as major as that. She said Betsy “when things are Fu*ked up, get up, and keep on keepin on girl”. 32+ years later I can still hear her southern drawl voice, see her bright blue eye shadow and her blond big hair as she told me that line. I love that line. I live that line. I will continue to walk that line.
So NO I am not choosing to act strong, turn a blind eye to being sick or trying to struggle through it all. This is the only way I know to live. With gratitude to each day, every challenge and counting all of my blessings. To look at what I get to walk through and know I am one of the lucky ones. There is a treatment out there now, even thought it is still experimental its an option for a gal like me. I was given the chance to try this. Insurance finally agreed to pay for it. The costs are high but the love of friends (some of you for sure) have made that even possible.
A friend has given us a condo to use while in Chicago, he is simply amazing for that generosity. We used in in Feb and Rocky will use it while I am ion the hospital for most of April then when I come out of the hospital I will go back there to recover for 10 days. We needed a private charter flight to get me home the very safest way possible and not have to put me in a plane with 140+ different people’s germs. That’s far from cheep. The go fund me has almost completely covered that cost so to all the friends that gave so generously THANK YOU! As a result of your financial help I will be able to return home to Colorado from Chicago as safe as possible. Our lives are such that we are blessed with great jobs and an amazing business. We have been able to pay for the daily expenses of this process and even some of the larger expensive extras out of pockets without huge issues thank God.
So bottom line I am good to go as I know my God’s got this. Pray for me or more importantly the doctors at Northwestern Medical (Dr Richard Burt) if that’s your jam, wish me well, send up a good thought, wish or light a candle but I am NOT unfortunate because all this happened. I have learned so much about myself, who will stay beside me no matter what, my marriage, my friends and family. Each lesson has been a true gift even if it didn’t look like a gift at the onset.
Looks like in a few short days, I will be starting a major time out of my life to receive my stem cells back and begin the Phase 2 of this entire miracle I get to do. Until then I go about my normal life and activities one day at a time……
Have an amazing day and when you breath deep and easy today know that I am going to do exactly that very very soon.