People used to tell me that they were amazed at how I handled being sick. I did have such a positive attitude I would smile at the little things. I was brave. I was not afraid. I don't know how to get that back. I used to say, "I'm just dealing with the cards I've been dealt." Well you know what? Those cards suck. I don't want those cards. I want a new hand.
I have all of these medical problems and there is nothing to treat them. I've tried. But nothing has worked. I'm willing to try anything at this point. No doctor knows what to try anymore.
I see so many people trying different treatments, from new meds to infusions. But no one is willing to try those with me. I see some of the best doctors in the country for what I have. But they won't do anything. Do I have to beg for help?
I know I could be so much worse off. I really could and I realize that. I am lucky for where I am right now. I am just frustrated.
Everyone's solution is Vicodin. It works wonderfully for me but I don't want to be dependent on a narcotic It scares me. I don't want to deal with addiction. But I still end up taking it most days. The pain is just too much.
I do realize my life is beautiful in so many ways. I am marrying my best friend in less then 100 days. I couldn't ask for more. He is my rock, my anchor. He is kind and patient and understanding. I cannot believe that e found each other. The only way I can fathom it is to know that God was involved. Maybe fate is a real thing. My parents are wonderful. We've been through so much crap in the last two years but they are there for me no matter what. I can call either of them and pour my heart out and they understand. My dad has Ehlers Danlos and POTS too. He is one person, along with my incredible cousin, who truly get it. And my mother is a saint. I wouldn't be able to function with her at my side. The rest of my family is a blessing also. My cousin understands better then anyone and it always there to talk to me. And I have a cat that cuddles me in bed when I am in pain.
I have so much to live for. I am blessed. But, I am also exhausted and frustrated. It's frightening. What will my life become? What will my body be like in 5, 10, 40 years? I don't want to deal with the future sometimes.
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