For the past 8 years I have been pretty much living at one hospital, or another. I was never a permanent resident of the hospital, but I've spent days/weeks confined to a hospital room. In the beginning, I hated every minute I was at the hospital. I didn't want people to come visit me because I felt "gross". I didn't want people to see me in this horrific state. The worst part of it all was that I had no control over anything I wanted to do. I was told when I could shower(which was never enough), I had to call a nurse if I wanted to use the bathroom, I was in a hospital gown with my patoot showing all the time, and I was told what and when I could eat. Every moment of every day was planned out for me. I remember thinking to myself at night, I wish I could make decisions for myself instead of always being told what to do. I didn't think that dream would ever become reality. I continued following every order doctors and nurses where giving me.
That all changed after I moved to Arizona. Before making the move across the country, I always had my parents with me at all my doctor appointments and hospital stays. The doctors used to always direct all of their concerns, or findings to my parents. They spoke to my parents about everything before they would even come to me. These doctors were treating my like a child. Yes, I was young and scared, but I still wanted to be involved in my health care. It's my body they are talking about. Why am I missing out on conversations with doctors? Why aren't I kept in the loop? Half the time I didn't know what was going on with my treatment. I wasn't sure why they were doing the tests they were doing. I didn't know what the plan was. I didn't even know what medications they were pumping through my IV. My parents would try to explain it all to me, but sometimes they were unclear about what the plan was.
I am not trying to bad-mouth doctors, or hospital systems. I am simply saying that we all need to take charge of our own health care(and our lives in general). We all need to take command of our lives. When I moved out west, I was all by myself. I didn't have my parents there to "deal" with the doctors. The doctors, in turn, also only had me to communicate with. They couldn't direct the concerns and issues to my parents. I was the only one the doctors had to discuss my health findings with.
For the first time, I was in control of my life and my treatment options. I'm not going to lie. I'm sure I've been a royal pain-in-the-ass many times. I ask every detail about every medication. I don't just take my doctor's word. I research every diagnosis they claim. I come back to every doctor with every question and concern I have before I start any kind of treatment. It is my right to know what the "plan of attack" is. It's my right to accept, or refuse any type of procedure, treatment, or medication the doctors suggest. I accept, or decline after carefully thinking through each option presented to me. I know my body. I know what "works" for me. I finally feel like I have taken control of my life. I am the only one who lives in this body everyday, and goes through the struggles that come with it. Therefore, I am the only one who can make the final decisions on what stays and what goes. I give the final say on what things to try next. It feels good to finally feel in control, and to fully understand all the options/rights I have.
I am a firm believer in opening up to family and friends about whatever issue you may be pondering. I always ask my family and close friends what they think I should do, when it comes to making a big decision. The input of others, and exploring all avenues, will only help you make the best decision for yourself. Take the suggestions of others to heart, but ultimately do what feels like the right choice for you. I know I will continue following my gut...it hasn't let me down yet.
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