Originally Posted by Lady Jewel
Please foirgivSo I just read through this thread for the first time. With some trepidation, I will share what makes me "differently-abled". Its funny that I found this thread today as my daughter and I were having a conversation about me and my health today and how it has affected AND helped us. I'm crying as I share this story because it really is a story of triumph but also some sadness for me.
Ariel (My 16 year old daughter. My only child. My hope for the future and reason for living) and I were talking to today and I started telling her stories about herself from when she was in my belly to the present. We laughed. I cried, as I am now in the retelling of this encounter today. I must digress for a moment so that when I share what I said to Ariel, will make sense. My life as I know it, pretty much went to hell when I was 39. I am now 48. I was partnered. I had a job I loved. Was at the top of my game and never thought it would end. It started out with blinding headaches and neck pain. I went and saw everyone until the ENT told me it was in my jaw and needed to go see an Oral Surgeon who was also an MD. This Doctor, my hero, was known as the best Oral Surgeon in Vegas. Did all the diagnostic tests, Yada yada. Came back that the disc in my jaw had all but turned to powder due to arthritis and degenerative disc disease. Soooo..I went on leave from work. Went to the hospital and had reconstructive jaw surgery. The blinding pain I had was gone almost instantly. Went for the PT. Worked my ass off and was able to go back to work shortly afterwards. In subsequent months, I started having shooting pain down my arm into my hands. I thought it was Carpal Tunnel and started wearing a brace. A month goes by and the pain gets worse. So one night I spent four hours bent over Ariels Girl Scout sash sewing badges onto it. Well that must have been the straw that broke the camels back. Woke up the next morning and had pain like my arms has gasoline poured on them and set on fire. Went to my PCP and he sent me to have MRIs of every body part. Turns out that 3/4 of my cervical spine had NO discs left between the vertebrae at all so I was basically bone on bone. Had to go thru a million (Well NOT that many, but certainly felt like it) painful diagnostic tests before surgery could be done. Well, nothing got better, only worse. I ended up having 3/4 of my cervical spine reconstructed. Woke up from surgery with NO pain. Yayyy!!!. Did the PT so I could regain the mobility in my neck. About five months later, the pain began again in earnest. Back to the orthopedist. Well, more bone spurs grew back and they had to re-do the entire surgery all over again. So Another surgery and another 5 days in the hospital, but this time I ended up in the ICU. Oh I forgot to mention between neck surgeries I travelled from Vegas to the University of Iowa, which has the number one orhtopedics program in the country , for a second opinion with an Orthopedist and a Rheumatologist. Diagnosis: Degenerative disc disease in my C-T-L-S spine. Degenerative arthritis. Some type of inflammatory autoimmune disease. Oh and one of the worst cases of Fibromyalgia the Rheumatologist has ever seen. Soooo...Got through the second surgery, About 7 months later, the pain in my lower back became unbearable, and yup, you guessed it...another two surgeries on my lower back. Came out of that in a wheelchair with the prognosis that I would always need that powerchair. I called bullshit on that. Yeah I needed for a while, but fought my way out of that one. One of the wonderful legacys that the surgery left me, was the Vascualr surgeon damaged the lymp nodes in my abdomen which gave me Bi-lateral lower limb lymphedema. My legs were so filled with fluid that the girth was 27 inches around my ankles. So in my handy dandy wheelchair that I was still in, I took the Paratransit bus to the lymphedema clinic three times a week. In the middle o very hot Las Vegas weather. part of the treatment consisted of three layers of special bandages from my thigh to my toes. Real nice in 117 degree weather. Finally got the lymphedema under control. Yayy!! LOL. Decided Ariel and I needed girls day out. Took my powerchair and Ariel on the Paratransit to one of the casinos that had a movie theater. We had brunch. Went and saw a few movies and had a great time. Paratransit come to get us. Loads me and my chair onto the bus and proceeds to speed throu the parking lot at 45 mph. Flys over a speedbump, he had strapped the wheelchair I was sitting in wrong and I flipped backwards. Hurting my neck and back. Spent about a year in treatment trying to get over the injuries I sustained. And believe it or not, I smiled through all this and really did a good job moving on. Fast forward two years, my partner of almost nine years calls it quits. Same day as I was diagnosed with steroid induced diabetes. Soooo...she went her way. Ariel and I got a new place. My new life was set to begin. One week to the day we moved, I decided to go meet Ariel at the bus stop because my car needed a new alternator and was not going to be fixed till that night. As I was walking to get her, an old man in a truck wayyyy tooo big for him, ran me over. Backed up and hit me again. I still dont get that. Poor Ariel was passing by on the bus and saw her mama get hit. It was awful. I was under the truck waiting for the ambulance and I could hear Ariel screaming. Was taken to the hospital. Basically hurt my arm, shoulder, lower back and neck. Yet another thing to get through. Which I did. The massage therapist I was sent to after the accident to help with spasms used to tell people that were in the waiting room, "Look at this woman. She has been through more in 9 years than 10 people should go through in a lifetime. She always has a kind word, a smile and hug for me and anyone she feels needs it". So I always felt that maybe that was the Universal reason I needed to go through all this stuff. To make people see that even in sadness and pain, that there can be happiness.
Ok, so back to the conversation Ariel and I were having today.....We were talking about how lucky she was that she wasnt a latchkey kid. That she always had me home when she needed me. How I was so available to her. And I reminded her that the only reason that I was able to do that was because of all the surgeries and health issues. She asked me if I could change that, not have all this stuff, would I. I thought about it for all of two seconds and replied, "Honey, I wouldnt trade ALL this pain and aggravation EVER. It was through all of this crap that I was able to be here for you. Most kids will never know what it is like to have a parent around 24/7". She came over, hugged me tightly. "Mama, I love you so much".
So how lucky was I to have been blessed with ALLLLL this stuff? Ive never regretted it for a moment.
With all my love and support to the rest of you who fly your differently-abled freak flags.
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