You know that question everyone asks "Where do you see yourself in five, ten, twenty years?" I used to have the most profound answers with the most ambitious dreams and goals. I wanted to own my own business. Check. I wanted to be married with three kids and a house with a white picket fence. No Check. I said I would make my first million by thirty. No way near that check. I wanted to make a name for myself in Sports Entertainment. Check. Check and huge Check.
I had a list I made when I got to college of my goals and dreams and I can honestly say I accomplished almost everything on that list accept the whole millionaire thing. However, I did date millionaires and my friends are loaded getting Maserati's for Christmas. So technically I have partied like a millionaire! Love you girl!!!! You know who you are! I never was jealous or envious I just said I would get there too. I also get to just walk into the most coolest parties at Super Bowl and people think I am famous! True story.
I sit here, 37 years old. Diagnosed with some very harsh illnesses that would kill most people. I walk around with torn cartilage, muscles and every important piece holding almost every joint in my body together is fraying away, tearing off from the bone, breaking in half or just eating itself alive. Sounds glamorous I know. I have a brace for every joint, bone and hinged part of my body. I even have this stellar back brace I wear when my stenosis is making me unable to walk.
I do squats every day to lubricate my knees and hips. I swallow twenty to thirty pills just to be able to smile and take a bath and hopefully be able to get outside and ride the bike or go for a walk.
I loved hiking. I loved the freedom of being able to climb the trails, be a part of nature and yesterday I felt the urge t go hiking. But I couldn't bring myself to do it. I stopped at the park, thinking maybe I could walk around the lake. But no. I left frustrated and sad. There is no taking chances on hikes or getting lost on dirt roads with my tennis shoes and backpack. There is no spur of the moment walk down the road and around the block. My legs give out on me if they get tired, overused and right now I have yet to determine what the threshold for distance and longevity is. I am working on it.
I am a scientist by nature and I love doing my own research projects. My legs are my newest project. I push them daily with squats and side lunges and movement around the backyard. I am able to ride the beach cruiser and take zeus with me and that has been the best gift ever. My mom's beach cruiser makes it possible for me to be able to go exploring or on adventures when I am in California and Maricopa without worrying about walking.
My dad is home from my sisters and I was hoping he would go on bike rides with me but I ask and he just ignores me like always. He doesn't talk to me so I try and talk to him but I get no where. I grew up riding bikes with our family and I thought since I was home now we could go on family bike rides but I don't wait for anyone to go with me I just go.
The reason I bring all this up is because I have been trying to make long term plans and goals for myself. Right now writing has been the most constant for me so I have a goal to write one blog a day and try to make it more fun. I have also made a goa for myself to relaunch all of my websites and redo my linked in so people know I am still out here in the world. I am going to also launch a consultation business for fundraising, marketing, events and public relations. I am also applying to The University of Southern California for my Master's Degree to start in the Spring. I am also going to get back on a horse this weekend and forget about my worries about riding and just do it.
I thought I had to sit around and do nothing while waiting on disability but since I am going to be seeing a judge I do not care if I get chastised for living my life while battling twenty two disabling illnesses. Just because I need disability to keep me afloat and help with long term care plans does not mean I can not have goals and future ambitions. I never had to rely on government help because I had my own business and I hustled. Yeah it was rough and I cried a lot but at least I could take care of myself and not rely on anyone. That is all I want. To have my own condo in San Diego. A horse in a stable and my animals.
I am not asking for much here. I just want a chance to have a quality of life. I just want a chance to be happy and smile everyday because I am proud of my life. I make a major effort everyday to do everything n my power to make my body stronger, healthier and happier. I let myself eat bad food just to comfort my soul and give my taste buds something real besides protein shakes and nutrional ivs. I have been able to tolerate every food that would kill me the past five years. I healed my own GI system with the help of my pain doctor and my ability to starve myself NPO status to survive. Now, I do not have to endure starvation and NPO days. Now I have plans and doctors and celiac plexus blocks as needed.
So if I made it this far without much intervention I should be able to continue to get stronger and healthier and have a chance to make new goals and plans and a life for myself. I start small and I will hopefully expand into larger and more daring goals, like my trip to France!!
My life is so unconventional that it is only fitting I create my own rules and own path again!