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.
Breaking the cycle
Is not easy
The wheel you go around in has spokes
and is perfectly round, so hard to stop
once it gets rolling
trampling everything in its wake
even when you love it
you can still step on it
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.
Lately I have been reading a lot about getting myself and my writing together, specifically my life and my blog. Both seem to be at a standstill lately. For some reason after the loss of my job I can’t seem to get it together. I love to write and get my thoughts across so I never understand why I slack off or procrastinate about doing the things I actually love. I love poetry and I so enjoy writing it. As for regular writing such as this blog, I really enjoy that too. I mean I have a few hobbies I am completely obsessed with like my art journal, my happy planning and my regular journal writing so I never get it when I begin to ebb with the things I love to do so much. I am still trying to figure it out mostly because I don’t realize I’m sabotaging myself until it’s well under way. It’s like a slithering snake this procrastination thing.
You know when you’re working all the time and curse the fact that you never have enough time to do what you really love to do?
Well, when I was working I was always frustrated about that fact. I always told myself that if I ever had the time I would write and journal all day. I would spend my whole day being creative. What baloney. I have been jobless for close to two months and I can’t seem to motivate myself to do any of what I always bitched about before. I sit tired from doing nothing yet unable to build the enthusiasm to do what I always spoke of. I wonder if I have some form of delay maybe it’s the “maybe later” disease that everyone acquires when they believe they now have all the time in the world. I’ve heard of people becoming depressed over life circumstances and not even knowing it or feeling what are regarded as symptoms of it. I don’t know really. I do know that I am certainly not where I would like to be in my life now. I also know I have to find my way out and into action all by myself. No one can fix you. As Buddha teaches: You must be your own salvation.
I am beginning with this blog and by writing lists of no more than five things to do at a time as to not overwhelm the senses. I figure this way the necessity to procrastinate will perhaps slightly diminish. I am hoping so anyways. I am putting my money on slow and steady. After all isn’t that what they say wins the race?
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.