It’s our first full day on the train and what can I say but that its an adventure already. We are all so exiting and all talk at once about how great it is when we get together. I love my little bunk and I spend at least an hour a day just contemplating the view outside my little window. It’s absolutely gorgeous here and I wish I could have brought you along. We made a stop at Khabarovsk station today and got to look around a little.The station is huge! There were people smoking like crazy the smoke smelled diffrent and I kind of wanted to try it but I didn’t. Aicia was dying to smoke too, she is not one to be teased with nicotene. At the end she decided against it. I think if she had given in I would have too, once you’ve been a smoker all of the familiar feelings come back when you smell one. Anyhow, I have to get to the business of writing now but I will send you pics. Love you!
This trip so far has taught me to devote time to what’s important which for me in this case is self discovery. Solitude has surprised me. How much I enjoy just asking myself questions and answering them without all of the noise that might surround me on a regular day. I have learned that when I devote time to me and to my writing we both become richer and more full of life. We develop like an old polaroid picture, a little clearer and brighter. The clouds of the imagination part and we see the sun shinning a light on what it is we really need or want to say.
What is itthat makes me creative and gives me the ability to create?
That will be my focus today. I’m ready. Not nervous, just ready.
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.
I have been a mother for what seem like most of my life. My three, now grown children were the essence of what I did and where I went for now twenty seven years of my life and I would not trade it for the world. Seeing them grow has been my privilege and blessing. Being a parent gives you a new perspective on life and all its trials give you strength you never thought you might possess. Still life comes with changes and my greatest change has arrived, an empty nest! That trial that all mothers and fathers eventually go through after spending half their lives raising children. It isn’t easy trust me I’m sure there are many parent out there that have no idea what to do with themselves after their children have gone.
I was one of those parents. I was stuck in the role of being a mom and being there for my children was all I did. That’s what moms do and we don’t regret it one bit. I am very proud of all of my children and I am honored to have devoted my time to them, that’s why I had them. Still the time has come for me to write a better story for myself. It’s time to dream of a future of my own. There are still many blessings to look forward to. You, We still have a life to live. one that hopefully has many years left. As a woman I find we need a sisterhood of women to help us do this. A place to develop all the other talents we may have hidden or placed on the back burner to attend our loved ones. A group of like minded individuals to push us forward in our new adventure. We need mentors and a process by which to navigate and go to our destiny. This is your time!
What’s your story? What do you want for you? What is your dream?
Now, Go. Find it. Do it. Be it! I am with you.
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.
I’m sitting here wondering just that. Why do I blog? Why bother when most of the time no one even reads it. Many times you feel like you’re talking to yourself and no one else is listening. It really makes you wonder why you even set aside the time to write. Then I ask myself why do you blog Ellie? Is it about ego and how many people read it or simply about you and what you want to say?
After a long while in deep thought I decided that I blog to keep my mind clear. I blog to reach that one person going through whatever I am going through,who has no one to talk to and to give them a little hope but most of all I blog for me. As a life blogger it’s a record of what matters to me. A record of my unique experience. I like to see my thoughts on screen or paper laid out bare. I am the queen of self expression and if I didn’t write I would not be happy and that is why I blog. The right person will always read it.
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.