It amazes me that I only now, for the last 4 1/2 years, realize that I really am different than most. Here I lived most of my entire life feeling as normal as anyone else, just shorter. I mean, I woke up in the morning, took a shower, got dressed (on my own), went to school/then work, drove a car, purchased my own home, all the things that you probably do every day and probably don’t think twice about, neither did I until 4 1/2 years ago when due to surgery gone wrong not only left me #paralyzed from the waist down but actually was a rude awakening to the fact that I am now disabled, handicapped, yes, different than the average person.
I now know I’m different because apparently there are no other or maybe on 5 other little persons that are paralyzed; according to a top spine doctor in Baltimore MD. I now know I’m different because I have such severe pain, that is getting worse, I know now that I am different because I can’t seem to find a doctor that I trust, that I can afford and/or that knows anything about treating a person with #skeletal dysplasia.
Imagine, 4 1/2 years after left hip revision surgery, which was supposed to correct my first left hip replacement surgery, landed me in this #wheelchair for life, I still suffer with pain in my left hip. 😩 The pain at night is so bad it can take us as much as 1 hour for me to find a position that I’m semi comfortable with. The #neuropathy (pins and needles), which is also a result of becoming paralyzed, in my left foot is bad but it’s nothing compared to the pain in my left hip, thigh and knee. I most likely need knee replacement surgery but I’m TERRIFED! 😬 I don’t know what doctor, I don’t know how I would do physical therapy being paralyzed and of course there is #COVID to be considered.
I’m tired. . .both physically & emotionally
I long for the day when my Honey is retired and we can just drive (since flying doesn’t seem like a doable option as we aren’t willing to put my wheelchair in cargo and risk it getting damaged), just him and I traveling to new places (hopefully finding many accessible). Could this ever be our reality? Will we find an accessible RV? We can hope 🙏 & dream… On our bucket list: first stop is for my Honey, he wants to visit The Sequoia National Forest , Sedona, AZ, houseboat vacation on Lake Powell, see the Grand Canyon, and so much more we want to explore.
As always, I wish you a journey filled with exploring new people, places and things – take time to learn from and enjoy each new adventure along your way!
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I just feel like in this day an age, there must be someone that you can talk with to find the right Doctor. I feel for you. I’m sure there is a RV out there just for you. Jo p.s its snowing so I finally had time to sit and read your blog.
I am sure the nerve pain is awful. As I see what it dies to your cousin Al. Pain makes you grumpy, sad, and feel why you survived this accident. I have tried to contact Matt from the little people to ask questions but never get an answer. Next well why not try Dr Phill. I am sure he could find you someone to help. I hope you received the last email I sent you with the revised Van a women did to use on vacations with her family. It was beautiful.hope brighter days are coming.
I enjoyed reading this article and speaking with you last week. Keep searching for a pain management doctor and an RV. Don’t give up hope!
Thank you, you were kind to spend time on the phone with me, I appreciate your support.