Many of you who know me or have read my blog know that I have been on dialysis for about six years now. But if you also know me well you know I have never once felt sorry for myself or have fallen into pity party mode. There are too many sick people, especially children that have not really even lived for me to be complaining about being on dialysis. I am strong and able, this is just a moment in time for me and I will surpass it. I have many ways of keeping hope alive. I always say I know God and he knows me and when he wants me there is nothing that will stop it so every extra day is blessing. I don’t intend to waste it.
As far as everything goes I am now tissue typing with my brother to see if we are a good match. My older brother has decided to go under the knife for me! I am beyond amazed at his selflessness and I know I would do the same for him were the roles reversed. Every test completed is a new step forward on the transplant road. A new step toward a normal life. I take every step in gratitude. I have made many changes of late because I want to live an organized and simple life. I am all about order and organizing and planning . I love anything that makes my life easier. I love functional yet beautiful things. As a writer who loves her craft I adore fabulous planbooks to write in and make my plans for the day. It puts everything into perspective for me and in a much clearer light. I am learning a great deal on this road. Things that I hope to pay forward once my journey is done. For now I will do the best I can with what I have been given and although I’d rather not be on this road I am mighty grateful to be here at all. No matter where I may have to walk on this road the point for me is that I’m still walking and that my friends is a blessing.
Everyone knows that I am on dialysis. I have been on it for a little over five years now. It hasn’t been easy in fact it has been a challenge and a trial for me. I’m sure that all of the people currently facing this disease feel exactly the same as I do. You merely exist while you’re on dialysis. Life becomes something only healthy people seem to experience. Our existence surrounds the need for treatment and when or where it will happen. We live from one treatment to another so plans for any other life experience must submit to the need for dialysis first. So here I am five years in but things are changing and I have decided to take you all on the road with me.
Yesterday was an all important day. After years of fighting with Medicaid I finally got the insurance I needed to get evaluated to finally get on the donor list. I am on my way! My evaluation went well. I spoke with doctors, nurses, social workers and dieticians. I still have to have many tests run before I am listed but the ball is rolling and that for me spells hope. The hope for renewed life. I took various tests while at the hospital yesterday. There were chest ex rays, blood tests and an electrocardiogram. Everything must be good before you’re even considered for a transplant. I must take optimal care of myself, I must be my greatest advocate if I want to be healthy again and I will be. Today is a dialysis day but today the light at the end of the tunnel is bright and I can feel its warmth on my face. I’m on my way.
Changes are something that seems to come weather you want it or not. Sometimes you see it coming, the necessity of it loud and clear.
The time has come for change.
It can be any type of change for anything and still take you by surprise and be completely unexpected yet somehow you know. You know when something is not working and when it needs to change, when you need to change.
- How do you take those first difficult steps to make effective and lasting change?
- What gives you the strength and purpose to move forward. You must be brave, I find.
You must be willing to do what you must without fear of how it will affect anyone else or their situation. I am not speaking of cruelty here or of not caring about people in general. I am speaking of doing what’s right for you. What makes you happy and leads you toward the purpose you find you are here for. Those are the greatest questions one must ask.
What makes you happy? Why are you here and what is your purpose. What do you want to get out of this life?
These questions have been plaguing me as of late. Breaking my concentration every time I find myself in a situation I know I don’t want to be in or doing something I don’t want to do. That’s where the knowing begins to surface and grow like a weed in your psyche. Making you unhappy. A symptom of being in a situation you don’t want to be in. A flashlight if you will on what you need to change. Those are poignant moments of clarity and we need to listen clearly and openly because they’re doors to we need to go through, roads we need to follow. Breadcrumbs in the forest of our destiny.
Have you ever felt that as you get older time seems to fly faster? Do you remember how long it seemed to take for the holidays to arrive? I remember how Halloween felt a year away in January and how Christmas seemed to take forever to arrive. Even when I was a teenager we went through the school year as if we had been sentenced to a million years in purgatory with no sign of summer vacation in sight. How things change and how you become more understanding of how your parents must have seen things.
Now that I will be 46 in a couple of weeks how my perspective has changed. How I have changed. I am a realist, always have been. There are no delusions here. The changes are clear and I don’t deceive anyone about them, least of all myself. The first of these changes is how time seems to fly. We have not celebrated Halloween when here comes Christmas bypassing thanksgiving. There’s no time to so much as enjoy one before another pops up. It’s a rat race, scavenger hunt and tag you’re it game all in one. As an adult you only get to prepare but never really enjoy the celebrations you held so dear and with such anticipation as a child. I miss that. For me the physical changes are enough to deal with. The exhaustion that comes out of nowhere, those little things you forget though you just heard it a minute ago and the ever so deep plunge your patience takes with people who make no sense. You know what I mean? That last one is a doosie for me. I have never had much patience to begin with. Especially for ignorance or stupidity from any source. The only people who get a pass are kids and that depends on the age. Sometimes. Most times the child is a product of the parent but that is another subject for another time.
Now as far as emotions go I find that the most difficult. Aging is an angry bitch with a hacksaw. She hacks at your face and body without mercy until only the shadow of who you were remains. The worst part of that is your brain remembers. It remembers youth. The freshness of your young face before the sun spots, the young hands before the lines set in. It remembers and teases you and entices you. It even tries to convince you that you have not aged and can continue to do that which you did twenty or even thirty years ago. Reality then hits you when you cant lift that leg as high or run that fast if you can run at all without gasping that is. Age my friend is a clown with bad makeup and no friends. Still we love her. I do because as I age I learn. With all it’s pains I see my children grow and flourish and I am part of that. That makes me welcome age as my best friend because she’s been with me 45 years and still I am here. Dialysis will come and go and my transplant will come when it comes. I will continue to hold her hand as long as I can. My greatest wish is to hold her tight and do it with grace, dignity and most of all with my mind fully intact.
I haven’t been writing regularly as I should be. I have to confess I have been slipping. Ever since I lost my job I have had bigger worries plaguing me. The reasons for which I lost my job will perhaps come forth in an upcoming blog but today is not the day. The wounds are still too new. I do need to get back here though, not only because of my love for the art of words but because it’s a form of therapy to the soul. Writing makes me happy, it seems to make the problems minimal and the worries disappear. I am grateful to have the feel for the word as so many people I know in these blogs and out of them, I know all types of wonderful writers. Sometimes I don’t know what to write about mostly because I don’t know what individuals want to read about. How interested is anyone about another persons life. This is one of the questions I ask myself most when writing. Is my life and it’s daily occurrences of any interest to anyone else but me or those directly involved? That is a question I obviously can’t answer for myself I just write my truth and let the chips fall where they may. I am here to speak. I come to the screen with a thought in my head and go from there. I am by no means a regular blogger I am a poet who thinks in verse but we all love expression in all of it’s artistic forms so here we are. May we all be well read.
Over the last two weeks my life has changed quite a bit. Good things and not so good things have happened and I am trying to flow with life’s waves and jump its hurdles with dignity and strength. The fact is that we all go through issues on a daily basis that we tell no one about. We bob and weave with our problems working hard to avoid the worst. I am one of these. I refuse to run around singing my woes to the world. I much rather buckle down and work through the drama and let karma do the rest.
So now I have a new journey to begin and much to think about. What I need to get there and how are the most prominent of those thoughts. I think on it daily and sometime soon it will come to me I’m sure. I am working hard on being positive and controlling my bitch mode because I have a bad one and if I set her free heads will roll so that is a focus as well. The motto must be this too shall pass. Maintaining control is the answer here and not letting anything sway you from getting to where you need to be. I know that some day soon I will be giving thanks for the lessons issues bring. Not yet, but soon.