Since new years,2016, on FB I have been more honest on how I feel on a general day. That way I'm not hiding it when someone could be going through it and not be getting diagnosed and treated. I hope this year brings good changes that are not being made yet.
That being said I now find myself staying away from FB because so many of my posts well.....with the truth so blatant it can get depressing for someone reading it. I am not depressed. I have excepted my disease with it's blessings and hardships. Sometimes I have to lay in bed for weeks at a time with help to get up and all sorts of things. Today was not that day. I have been in bed for a week up some days but the last two days I have been in bed except up to the bathroom. Today I woke up my arms and legs felt very heavy with burning muscles and shortness of breath like I had just ran the fastest sprint.
Phillip was my hero and got me ready for my big day. On my way up to Pebble Creek for my first day of the PASS program I lathered on extra Nitro paste. Put on another Nitro patch and broke my promise of not taking pain pills during the day. I was not going to miss this day because I couldn't sit up. I turned my oxygen from 2 to 4 to help out my shortness of breath, chest pain and fatigue to my limbs. As soon as I got bundled up and hooked into my sit ski I was so ready.
Soon I started moving down the hill. It didn't matter that I was in a chair. I was so grateful for that chair because the smell of the snow, the rush of the air and sting on my skin all came back to me and that was exactly how it was when I was on my own two feet. When I got to the bottom of the hill it was all I could do to not cry. I was in a place where I had worked for 4 years and been to so many times before and thought I would never have that opportunity again.This chair gave me everything I had missed for so long.
I started skiing when I was 4 years old and never stopped. I started Bradach before my heart went bad and he was 1 year and 6 months. I'm so glad I did it that early since it would be the last year I'd go down with him until this year. Today was especially nice since Phillip was there and McKenzie my best friend was right there being my physical support and cheering me on. She is the one with the blue coat and white helmet.
I will most likely be in bed until I get a hospital bed....or maybe, just maybe that ski chair opened my vessels just enough to get me out next week. I sure haven't stopped smiling yet. The pain is back but the exhaustion What have right now is the right kind of exhaustion people have. The kind that is deserved. So toast a glass of milk, water or whatever to skiing opening my vessels long enough for a doc to understand and help my plight. ~Sleeping on cloud 9 tonight~