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Thursday, October 24, 2013

My Thoughts

Off and on I am thinking about myself and my life. Where I have been, where I am now and where I may be going in the future. I wasted a lot of time in worry and have been my own worst enemy throughout my entire life, blocking myself from moving forward in any positive way from fear and negative thinking. Why do I want to spend time and energy and invest myself in anything if I'm just going to get sick and have to give it all up anyway? So I have given up before I even started.
     I am writing. I have always wanted to be a writer but, I spend more time thinking about it and planning it than actually doing it because writing means digging deep inside and facing the truths that live there. They are DEMONS and they are dark. This has been a truth I have run from for 40 some years! AND, writing is WORK. For me...it is easy when I start and the words flow like water in a stream...they go where they flow but the work comes in STARTING. It comes in believing in MYSELF. That I am capable, that I am worthy, that I have a voice and that it is equally valid. That is HARD work for me.
     HARDER even still is telling the ego inside me that says, NO...you can't do that!...who are you to think you are good enough to write about that?...who DO you think you are anyway?...you're not good enough, you're useless and a waste of time and space, and NOBODY wants to hear what YOU have to say...to SHUT  UP! I strive EVERY DAY to knock that voice out, spin it on its head and DO things anyway, write anyway, TRY anyway. How could I ever get better if I don't?
     How this has anything to do with my disease is this...and I've been thinking about it a lot because of my step-father. We talk about it sometimes and all the ailments that come with age and he gets upset with me because I tell him, "I am NOT going to get old." I have accepted and made peace with the fact that this disease is going to take me "before my time" but MAYBE it just is my time. Maybe it's ok to accept the path set before me and not chase a LONGER life but rather a DEEPER more meaningful one instead. This is a journey. This is MY journey. Who is anyone else to tell ME what is right or wrong about my choice and manner of living it?
     I frequently get bothered by the doctors, nurses, diabetic nurses, social workers, etc. to face the stark reality that is my existence, that is my disease and to do all the necessary things to "fight" and to be healthier and to live longer and I get it I really do and I work at it too I really DO! I KNOW from first hand experience that their suggestions and explanations make sense and WORK to improve my situation and I won't give up on it I PROMISE but there is this part of me that struggles and fights to live through all of this and sort out how to love and appreciate this life that has been given to me on MY OWN TERMS. That likely means that no matter how much you bug me I will NOT test my BP or sugars DAILY and I will sometimes EAT WHAT I WANT even if it is NOT good for me (and PAY the price too) and I will balk at exercising EVERY DAY because I am NOT an activity seeking adventure hound but rather a reader, researcher, watcher, ponderer, dreamer etc. etc. and the reason for this is that I want to LIVE in my life and NOT worry myself sick and sicker every day by obsessing every little detail of it. I have done ENOUGH of that! IF I do that, in my mind the disease WINS. I want to accept life as it is and find a way to appreciate it ANYWAY...even when all the shitty hits keep on coming. Bring it life! Knock me down as much as you feel a need to. I WILL get up again and I WILL keep trying anyway. WHO is it exactly that says LIVING=climbing mountains, jumping from airplanes, thrill seeking of any kind, or chasing every activity that man has invented to amuse himself? Or that LIVING is NOT seeing the world through the eyes and minds of  people who found the language and words to express it to us? (READING) OR finding peace and joy in simple things and the relationships that I share with others? LIVING is whatever version of life you choose for yourself and that you LEARN and GROW and APPRECIATE and LOVE and SHARE and EXPERIENCE it in a way that fills you with JOY. I struggle DAILY to be the one on top and in control and FREE of worry and stress and insanity about tomorrow. I look to find MY joy. I may not have tomorrow...but I have today. YES, sometimes I wake up already tired and want to give up before I even start and feel crummy so continue to deal with that but also on a lot of these days I FIND support, encouragement and joy from various places and I want to focus on THAT.
     It is NOT easy living through this. The list of complaints is long and the list of people I can share that with is few. It is difficult to explain to those who are not privy to my daily life and struggles because they just don't KNOW. I am grateful to my husband and children who DO realize that life is quite often a very BIG challenge for me and the few friends who are there to encourage, support, listen and try to understand. It would be 100 times more impossible to find JOY at all without them. (Thank you all for that.)
    So I have decided that however I feel and whatever I think (whether good or bad) I'm going to share it with whoever is watching, waiting for, or listening to my voice. I am not going to worry about how anyone else really feels about it. I am writing for those of you who need to know that someone understands and in my own way I hope even the times of finding my way through the darkness to the sunshine beyond can and will encourage YOU also.
     Find and make MEANING out of the crap that life deals out to you and NEVER give up fighting HOWEVER it is that you take to the battlefield. I have to BELIEVE there is NO wrong way to fight a good fight and if you are LEARNING and GROWING and finding JOY then whether or not you are taken "before your time" life and disease do NOT win. YOU DO!!!
...and these are my thoughts today. ;)
   

Aranesp~10/24/2013

Shot day! It definitely helps and upping my insulin by 2 units also seems to have helped a bit as well, I have more energy and have been getting a lot more done lately! Yay!

Thursday, October 10, 2013

Aranesp~10/10/2013

Today I will take a shot later but I'm headachy and going back to bed this morning.
More to say later...