Twisted Road

My insides are throwing me for a loop. Sometimes it’s a loopty loop.

Feeling sick can make a person feel helpless. Feeling like you might have to depend on someone makes you feel even more helpless. Then on rare occasions it can make you feel mad. Feel like you should be able to do everything yourself with no help. Wouldn’t life be perfect if you could always be healthy and always know that you can do everything yourself.

Being sick gives me a glimpse into the future, one that is filled with old age and dependency. That thought frightens me. The more I think about it the more I feel sick and my insides begin to twist again. I want to live a long healthy life. Filled with all my dreams coming true and the happily ever after that I daydream about. Then reality hits and so does that gut wrenching feeling something is wrong again.

So, then I open my medicine cabinet and realize I have so many drugs that I could open my own mini pharmacy and start charging per pill. I could make a lot of money, since most doctors love to hand out prescriptions to people like me.


Like me… I am the kind of person that goes to the doctor at the very last minute, especially more so now that since I frequent the doctors like it’s a hot new hang out. Like me... the one that gets a prescription every time I go in and I go home and add it to my collection. I like taking pills less than I like going to the doctors. So, that should tell you something. I pass on the drugs as much as I try to pass on the doctors. Which reminds me, I forgot to go yesterday. Great! Am I going to have to pay for that?!

Don’t get me wrong I don’t like being in pain and if they tell me I HAVE TO TAKE something, I will take as directed until it’s gone to avoid feeling as badly as I did. But, when they say take as needed you can bet that I will pass on the meds and “try” to talk myself out of anything that I feeling. Some things obviously can’t be willed away. Some things are permanent and those things are the things that twist your stomach into a knot.

When a doctor tells you that you have a life threatening disease that will cut your life short, you freak! Unless of course you get the proper treatment and follow all the rules, then instead of ten years you get twenty. You think WOW if I listen I’ll get twenty. Great… so that means I’ll be fifty. Holy shit! Fifty?! Really??! Did he just say that to me as he wrote another prescription and said see you back in 6 weeks? Yes, he did. Thanks doc. See you soon. URGH!

Then I go back in six weeks thinking he told me the worse of it. I mean telling someone ten years at the age of 30 is bad enough. Then you give them a ray of hope with you could double that time and make it twenty years. So, of course, I want as many years as I can pile on. So, then I hear his directions to maintain a “healthy” life and help yourself live with this disease as long as possible. He begins telling me about all the do’s and don’ts of my future. I stare at him in disbelief as he rattles off all the things I can and can’t eat. Activities I can and can’t do. Basically the life I can and can’t have.

Then he looks at me and I wonder can he read my brain. Since, I said to myself, screw that about ten times since he started talking. Then he proceeds to tell me what will happen if I don’t listen and then I am thrown into the guilt of wanting what I can no longer have. I stare with indifference just as I had when the doctor and the nurses came in to “break the news” to me. What can I do but do what I need to. Right!? Why am I being selfish? This could be much worse right? This could be the “c” word. So, it’s going to happen, it’s going to hopefully take many many years. Why am I worried about things I can’t have, isn’t life filled with them.

As I leave I look at all the fifty some things waiting in the lobby and I think… Are you at the end or beginning? Are you about to start your journey to meds, needles and surgery’s too? Then I think what if they are already at the end? Do they want to give up and stop with it all? From what I hear it’s hard and the journey is long. A lot of time people want to give up and let the cards fall where they may. I think wow, why would you do that? Why would you even think that? You are supposed to fight and fight hard. Beat the odds move forward and give yourself more time, as much time as you can. Don’t ever give up and don’t ever give in. Right!?

Yes, coming from me the doctor ditcher, it’s weird. But, hearing people like my dad say he wants to give up, it's hurts. So, now I know not to say things like that to the people that care about me, even if I do feel like it. I am nowhere near where my dad is with it all and I already hate the process. I watch as he goes through day after day of treatment and think how am I going to do that? How am I going to survive that? I guess you just do. You just keep moving forward and you deal with what you have. I can only hope that when it comes time for me to endure what my dad goes through, and hopefully that is a long ways off, that I can still think positive and make positive choices.

I often wonder how my dad feels about knowing that I have the same disease he has. It’s hereditary and I have it because he has it and he has it because his dad had it… and so on and so forth. I hope every day that I don’t pass this onto my kids. The thought is scary but I can’t live life afraid of the “what if’s”. Just like my dad didn’t. It is what it is and I live with PKD just like he does. I hope that when he hears me feeling sick or in pain that he doesn’t think anything badly about it. It’s just another wonder in my head.

Then comes all the thoughts about the future, my future! Where it’s headed and where I will be and where will I be going. It’s a frightening thing to think about the future and the uncertainty of it all. How can I take care of other people if one day I will have a hard time even taking care of myself? It scares me half to death and I figure the best thing I can do is plan things out as best I can. Leave the rest be up to fate!? I suppose not. I need to work hard while I can and keep moving forward.

These are thoughts that wander around my head when I am feeling sick and fill myself with worry. I start to think about the road ahead and what I want out of life. My life! This life I have and as long as I get to enjoy it. I want to rid myself of negativity and people that thrive in it. I want to fill my life with happiness and those that bring it. I want to rid myself of heartache and heartbreak. I want to fill my life with love and laughter. I want to make all the moments count and every minute worthwhile. I don’t want to waste my time worrying about what could have been. There’s no point in dwelling about anything if you aren’t going to make things happen for yourself. It’s my life. I am going to live it!!
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