I am 48 and I sill wonder what love is. I have some ideas of what love is but at times I still wonder and I think its because every time I think I have it figured out I get knocked on my ass as God laughs and waves a preverbal finger my way saying “That’s not it”, you my dear have much yet to learn. And I know I do. I am a lover but I have a fair amount of fighter in me as well. I want to know things when I want to know them and I want to know them for sure. Love can’t be researched though, its the language of the heart and we are all just trying to figure it out in our own way. I know love is kind, patient, trusting and all that good stuff or at least its supposed to be that way. I am loving and I try to be kind although my patience sucks ass most of the time. This I know and have been told by several people. Still aside from those things, what is love to you?
To me it’s being there for the ones you claim to love.
Being honest even when you think it will hurt.
Trusting and keeping your word.
.Being faithful if it’s a relationship and treating the person as you yourself want to be treated. Of all of the other things I think this is what love is the most because if you treat others as you’d like to be treated yourself everything else falls into place.
What do you call love?
Only a person who’s been on dialysis or the people they allow on their journey know what its like and all of the additional complications that come along after you’ve been transplanted. It is an ever going road pebbled with pot holes and detours as well as open smooth stretches. Still it’s one we rather be on than the one we were before. I am one year into my transplant, on anti rejection medications I administer every 12 hours and living life as best I can. I must admit it’s been pretty smooth sailing for me and I am mighty grateful for I have met too many people who’ve had a very hard time even after we think it’s supposed to be easy.
Today there is a hurdle. The access I have not used for over a year has decided to clot on me and it’s pretty painful. I informed my doctor of the issue and now I must see a cardio vascular doctor to see what can be done to open it up which might mean surgery, don’t know yet. For those who have been on dialysis it feels like when you’ve had an infiltration, so you know the pain is real. I’m dealing with it as most of us must and do on a regular basis. We find strength from within and from those in our corner. We travel the road trying to avoid the pot holes and pray for smooth roads. Today I was called a trooper by someone I love but I don’t see myself that way. I am simply a survivor who has adapted to jumping these hurdles because the good times are worth living for.
To everyone on dialysis out there, may your roads be smooth. May your hurdles be few and most of all may your moments worth living for be many. THIS TOO SHALL PASS.
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.
If you are on the transplant road like I am the first thing you learn is that there will be hurdles to jump, plenty of hurdles. These hurdles will either make you run for cover or build you up to the point where nothing will break or tear down your resolve. I have been jumping hurdles since I first found out I needed dialysis in 2010. This post is bout my latest hurdle and I will need to jump big for this one.
As you all know I have been going through a battery of tests just to evaluate whether I am healthy enough to be on the transplant list to begin with. Most tests have been accomplished and I am happy to report, passed with flying colors. Well almost all. Last week I went for my first ever much dreaded mammogram. I know every woman is cringing at the word as I type and they have a perfect right to for it is an excruciating procedure. Lord in heaven it’s like being felt up by an enemy. The way they twist and smash and pull can only be described as a baker kneading dough but I did it. I was a champ for the cause but of course it never ends there. A few days later I was called to come back for as they put it, a second look. Can you smell the fear?
The call we all dread. Still I was told it’s routine because they have nothing to compare it to this being my first mammogram of all time so of course I go. This time certain areas are focused on, 3D scans are taken and even a sonogram is performed all during the same visit. Now I am nervous. Well as you might suspect by now something was found on my right breast. Two areas as of yesterday were biopsied and I am currently recovering at home. The biopsy was not so bad and I am currently awaiting my results which will be given to me on Monday. For some reason I am not afraid. Whatever will be will be and this is my hurdle. A new hurdle I will clear like all the others because that is my fate. I will survive in this life or the next. Fear has no place in me, it’s just not part of my makeup. As the hurdle gets closer I am preparing to jump and up is not such a bad place to go.
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.