My life is far from a dream and even farther from a fairy tale. Once I get myself up out and out bed, I slowly walk my aching body to the bathroom to pee. I have to pee every hour or more and I can not control my bladder any longer. If it wants to work it wants to work. I am now seen running to the bathroom sometimes so I do not pee myself. ys numb, tingly. Sore. Tight. My vision is so blurry I cant see to get out of bed. I roll over and push myself up. Nodding my head, rolling my shoulders and seeing if I can feel the ground beneath my feet today.
Glamour at its finest perhaps?
Because glamour really is about covering up imperfections and flaws and enhancing the natural beauty with colors and contour to show the world a different version of yourself. I still am glamourous because I have peed my pants and no one knew! I am not ashamed to say it anymore. I may be beautiful but my body is disabled.
Disabled from me going to fast. To hard. Being too stressed out. Crying too much. Begging for help. Never getting help. Being let down by everyone who said they would help you but don't. My body has taken a beating from the world, from me and from my life. It is time to rest.
I fight the fact that it is time to rest. it has been a thought I can not comprehend like I usually do. Does that mean this is the end of my life? Am I dying? Am I too tired to get up because my body is dying? I just need some answers and guidance.
I want to make plans. I can move back to California and live in La Jolla. I can go to USC to get my Masers. I Can eventually travel the world as I had been planning since 2009. I want to fall in love. Real love. I don't even know what real love is. I want to know what love is. I want to show someone all the exciting spots I found and the places that make me smile. How can I think of these things and pretend like my life is normal when everyday I watch my body get smaller and smaller and my hands weaker. My mind is not as sharp and my eyes only can take so much in one day. My legs ache from the pian of using them. My feet numb and beat up from not being able to feel the ground beneath me. No doctor has seen my condition as bad as it is ever. I have seen over 100 doctors and the damage is just so bad that all we can do is pallitatative care and keep my mind active.
I no longer can hike the Arizona mountains. I could not kayak and paddleboard in La Jolla. My body is just not strong enough to keep up. So I told myself to go back to Arizona and now you have something to look forward to. Getting better again so you can go back to La Jolla to do all the things still left to do!
The thoughts that go through my brain daily are frustrating and heart breaking but I don't know the answers and by saying it out loud I know that the answers will find their way to me. I have been letting things go and asking out loud for help and it has worked. I am hoping tomorrow the doctor and I Can have a real conversation about life expectancy in my condition. They have got to talk to me about this and not write me off. I am scared and worried and fighting so hard to stay alive.
I manifest a healthy body everyday. I do hours and hours of yoga, pilates and pool therapy. I swallow about twenty pills a day. I smoke marijuana all day long. I take massive amount of pain meds just to get up some days. I am in bad shape. But this also reflects a very fun summer on the river and a long road trip to beach cruise it down the San Diego Coast.
I am doing it all. Now lets pray god has a miracle in store or a way to ease my suffering so I can continue to live. I appreciate all the prayers and thoughts. I had a great time on my runaway vacation and my parents and I are in a good place. I have to just not be so angry. I have a right to be angry but I have to let it go. Please keep thinking of me as I learn to let go of my anger.