Just the tellings of life through the eyes of a 29 year old, Cajun Louisiana Native with Scoliosis, Kyphosis, EDS(Ehlers Danlos Syndrome), and other medical issues, just trying to get by. :)
I have had my go fund me page since Jan or Feb. People have been generous and I thank them (especially the author of "Wonder" who generously donated $1000.) However, I share it constantly on all my social media platforms and a few people share it, but today made me so sick to my stomach. I shared it a group on for people with similar disabilities and one of the members felt it was her responsibility to "set me straight." - Evidence down below: Sally Hockman is a snooty and rude individual. She doesn't know my story. She doesn't know what I deal with on a daily basis. "Many people have broken rods beg for money," but do these people happen to have great health insurance or doctors who take Medicaid, no matter the state? .... Some people aren't lucky!
Today, while in the waiting office of my pain management dr, I was scrolling through facebook, when I suddenly saw something that ruined the entire rest of my day; A friend of mine in St Louis, Missouri, Mr. Mike James, passed away overnight. I met Mr. Mike James in 2012 while I was in halo traction at Shriners Hospital for Children-St Louis; he worked at Cabela's and the company would come to the hospital once a month for "Cabela's night" where their volunteers would bring educational things about Native Americans, animal trapping, hunting stuff (no weapons) just pictures or like duck calls. It was a highlight of the month for all of the patients to enjoy. I was one of the oldest patients there, so the adults would often talk to me about "Where I was from," "what I liked to do," "If I had ever been to a Cabelas," stuff like that, and a few of them got close with me because of my "spunky attitude," these included Mr. Mike James, his wife Nancy, and our mutual friend Beverly Duval. They were there through it all- my surgery, my recovery until I went home, when I went back for checkups, when Beverly hosted me for a week for spring break, my first boyfriend, and they had just met my fiance' and he approved of him, even liked him, and planned on attending the wedding next year. Now he'll just attend in spirit.
One week and a day ago, we were having dinner with you and your wife. One week and a day ago, we were laughing and chatting and catching up, you and my fiance' were talking "hunting, guns, Trump, politics, all kinds of things." Plans were made to attend my wedding next year, talks of us thinking of possibly moving near you and your wife, plans for you and my fiance' to go hunting together. Now you are gone, back to heavenly home and everyone left behind are in mourning. You were one heck of a guy, Mr. Mike James. I will miss your comments on my facebook, I will miss seeing you when I go up to St Louis. It feels like a bad dream that I cant wake up from. I wish I could just wake up and this nightmare not be real. It feels like someone punched me in the stomach. it feels like a giant lump in my throat. It feels like my heart has shattered into a zillion fragmented pieces. :'( RIP Mr. Mike James. I know you def. earned your angel wings.
<3 Fly High.
so the latest on my back: I saw dr. Kelly today. He is very optimistic. His plan is if my rods aren't infected (we did labs), he says he will just open the incision scar where my rods are broken at, clean up my wound, and add in some "dominoes" and add in some extender rods." It will be "Simple and sweet," as he put it. :p The date is the same, August 14, but I need to be here by the 12th because I need to go to get my central line valve put in on the 13th. If he does what he wants, "Simple and sweet," he doesn't think I will have as many complications like I did last time bc last time I had broken ribs and pneumonia from that which led to trach, blah blah blah...the framework already there, this is just some maintenance repair! LMAO. But whatever God's will, will be
