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.
I was sitting in the living room with my very intelligent daughter when she asked me this brilliant question. Sometimes I look at her and I’m so proud of the young lady she’s becoming and also proud that I’ve had something to do with it.
After the initial shock off the question I decided to give it some serious thought. Would I want to know how my whole life is to be played out right there in black and white? Facts on paper. Life and death and how?
My answer I would have to say is no.
I would not want to read about my whole life on paper before I have had a chance to live it. I would not want to know when i would be getting sick or how or when I would draw my last breath. I also would not want to know when or if I would lose a loved one. If dialysis has taught me anything it’s to love and live in the now. Nothing is guaranteed. No day is promised.
Can you imagine the kind of stress you would be under just knowing and waiting for the tragedies that might befall you? I mean I’m certain there would be enormous joys as well in your life but isn’t the greatest joy in the surprise of it all? What is the sense of living if you know everything coming your way? Still, it’s quite a poignant question so…
I ask you, would you read your story to the last page? Riddle me that.
Have you ever sat down and really thought about what brings you peace?
Have you ever contemplated in silence perhaps what really gives you that sense of total serenity and what you are willing to do to find and keep it?
I am sitting here thinking about just that and decided why not write about it. It’s funny but when I thought about serenity and peace, money was not the first thing to come to me. I didn’t think boy if I was rich I’d have peace. The first thing I actually thought of was an island paradise and silence.
Not the type with a huge hotel or luxurious amenities but a small island with clear blue water and simple palm trees with a hammock in between. A little cottage not far behind with a room full of books, the one I love, a warm fireplace in a cozy living room, dressed in pastel colors. That’s what sounds like serenity to me. There are no delusions of grand living in my dreams of peace, just simplicity.
I think deep down we all feel this way. I believe all we want is simplicity. The ability to live without having to stress about the most unnecessary things, all those things we think we can’t live without. The rub comes down to this.
What are you willing to do to get it?
Are you willing to live simply?
To give up all of those things you think you just can’t live without if it means you’d have that feeling of complete serenity?
Where is that place for you and are you willing to go there?
For me the answer is yes. Then again I have always been a simple person. Dialysis has taught me that life is not all it’s cracked up to be and neither are all those things we feel we can’t live without. It is surprising what we really “need” to live. If you were to really think on it you’d find it’s not much at all. I’ll even wager that if any of us were trapped in a paradise island like the one I dream of, few would refuse to stay. Most would give up the rat race and maybe even read a book.
May we all find our serenity soon.
We all have fears. Some overpower us and make us into a mere shadow of who we are meant to be, what we are meant to do.
Before my fortieth birthday I would venture to say that my fears were minimal. There were few things I could honestly say I feared besides my children’s safety, their upkeep or raising them properly. I honestly think it is inherent in all of us to believe ourselves invincible.
That is why we find it so difficult to accept death or illness. God taught us to create life and so death seems unnatural although it is not.
Perhaps it is the fear of the unknown that shocks us most. Not knowing where you’re going can be a powerful catalyst for stopping you in your tracks and shaking your boots loose.
Still, fear has finally found me as it finds us all some time or other. It has found me in the form of kidney failure and dialysis treatments. It found me in the form of needing a transplant.
My fear is not getting the kidney I need to keep living. That I will have to continue existing plugged into a machine twice a week until my body gives out. That my life will not be all that I know it can be. This fear has in turn has caused a snowball effect as most fears do. Once we fear one thing we open the door to so many other fears. Now I fear not seeing my children getting married, not seeing graduations or grandchildren. Fear of this disease and what it does to my body has made less of me but not to the point where I have lost the woman I am underneath.
Fear can overpower us, yes it can, but only if we allow it. It can transform us into shadows but only if we dim our inner light and stop holding steadfast to our faith. It can change us but it doesn’t have to alter who we are.
I fall into my fear sometimes still but every day is less. Every day I remind myself that I am not the only ill person in the world. There are people out there suffering of terrible ailments worst than mine without the love and support I am blessed to have. I know that as bad as this may seem at times I am here for a reason.
I am alive for a purpose. I have been blessed.
So if you find yourself in fear remember all of those things we forget when fear grips us in its icy hold. You are still here. You are alive for a purpose. Fear does not have you unless you give it permission so hold fast to what you believe and turn up your light.
And if all else fails, come to me and I will help you remember that you too are blessed.
This is a loaded question. There are so many things I wish I knew when I was 18 that had I known them my life would be unrecognizable even to me.
The greatest of those would have been slow down, nothing is that serious! You can cruise your life and do it right.
You don’t have to run.
Had I followed this knowledge perhaps I would have not committed half of the mistakes I committed in my life or at the very least I would have made different ones with better results.
I also wish I had known I had options in life. That I had better choices than the ones other people had for me. That I could be myself and my choices were mine to make. Had I known this I would have lived fuller and taken the world by storm much sooner.
I am still trying to take it though and that counts don’t it?
Still I would have explored the world.
Chosen many more adventures, seen many more sights.
Had I slowed down I would have waited to do many of the things I did way too soon like getting married at 18,having three children by the age of 29, or quitting college that I may have been a better, more educated parent for my children. Although I did the best I could and to this day I am quite proud of y sons and daughter. I still wish I had known that I could do better, for me.
Because I know that I could have been greater than I am now.
Still, I also know that everything happens for a reason. I know that I traded being a wiser mother for being a mother who was more open minded, virile and willing to learn from her children. As they grew I grew. I taught them and they taught me that I didn’t have to be perfect. That I was o.k. the way I was because I truly loved them.
I learned that I became a mom at just the right time because had I waited too long I would, because of my kidney disease not been able to be a mom at all and that would have hurt me more than any needle. So God had a plan after all and I am good with that.
So yes, I wish I had known a few things when I was younger but I guess that’s what youth is all about. Learning and becoming. I figure if we knew everything there would be no need to live and I intend to live with all my mistakes and success in tow.
All I can honestly tell you is to be proud of you. We have come this far and too many haven’t. Plus I am correcting one mistake this fall. I’m going back to college. And I won’t quit because this time my kids will be in the audience to see me.
I wouldn’t miss it for the world!
My addiction was an addiction that many people have and struggle with every day. Smoking. I was a smoker. I did not smoke two or three packs a day it was not that serious but I was addicted just the same. There were times in my day where I just had to have a smoke like after meals, when I woke up and before bed. At first I could curb the nicotine need but as you smoke for a longer period of time it becomes ore and more difficult to avert the desire to light one up.
I had always prided myself in not being addicted to anything or at least in being able to quit cold turkey which I did with smoking a few times when I got tired of it or the smoke made me sick. This time however proved to be more difficult. I had become so used to smoking that I could stop for a few days but as soon as I got that coffee at the store, the craving for a smoke would hit me like a bullet, never mind after I had lunch.
Do you think the need for coffee does something to a smoker that makes them want to smoke? I wonder but, I digress. As I was saying those were my hardest times and as the days become weeks you become weak too. I would go as far as to say that when you become addicted to smoking at times it’s all that will actually make you feel better. At times when I was stressed I would have a coffee and a smoke and all was well with the world.
Along came dialysis.
I think dialysis has been the bane and savior, in some ways, of my existence. One night I was out at a spoken word event in NYC. I had been smoking excessively and drinking red bull along with it. I don’t drink alcohol so whenever I went to an event where it was sold, red-bull was my drink of choice. The combination is what I think kick started my kidney failure.
I just knew something was wrong by the end of the night. I felt sick as I never had before and boy was I right. Suffice it to say that the day after I woke with a fever of 103 and two days later I had a catheter poking out of my chest and hooked on to a machine I had never before seen in my life.
Everything got real fast and smoking had to go but It doesn’t mean it was easy. There is withdrawal to smoking I didn’t expect. Dialysis did not stop the cravings but it did make me scared to follow through. I did fail two or three times but I will tell you that I paid dearly. You don’t want the feeling of smoking on dialysis and after I screwed up those few times and the after effects kicked my ass, I was done. I dropped the Newport habit like a bag of shit and kept it moving.
It’s been two years for me since my last smoke and I certainly don’t want anyone to have to quit the way I did but it’s my unfortunate story and so it is.
I haven’t become an advocate to stop people from smoking and this is not a blog about that but I do agree that if you can find something better to do with your lungs and mouth, I think you should go for it!
The smoke free dialysis patient 🙂
we spoke, we always speak he and I
some of the most interesting and intriguing conversations of my life
they light my mind
and today was no different
today was transforming
a man aches
he can ache as hard and profoundly as any soul, as any woman
As I have been, so has he been
hurt badly time and time again and still we found each other
through the rubble of our existence and all we have endured we laugh
is love laughter despite the tragedy that can follow you blindly through
or is love understanding that we are all human and have wounds within us which
we could only hope another
like us understands
is love a journey you are willing to take with another
one you can hold on to so that you may each be that crutch for one another,
walking thru the mines
That have taken a bit of each of you
Leaving you both with a slight limp
before you found each other
Is love a blending
As we blend
When we are together
Not knowing where you begin
And I end
and every time we speak
i look at the mirror that is me
in him and through his eyes i see
that we have both seen tragedy
the wisdom of pain has marked us both
and so we are both ready
to just love
for each other that which we tried to be for others
suffocated in their un acceptance and insecurity
i have found love with knowledge
in a time when i least expected it you see
We only think we know what we need until we meet our eternity
Our forever in another’s eyes
Who sees the shadows of our
Complexity and still
Wants to stay
And it’s in no complicated manner
The way we blend
I fit in his jagged crevices and he
Washes my bruises away
Thru simple words that are not
Always I love you
The truth never begs to be
Repeated it just is
We want and do what we would do for those who
Never accepted our natural
He beats for me
Teaching me that my wait was not a burden to be born
But a slow meal
He has come to serve
And in return
I will feed
And grow strong
Fattening each-other’s souls
With faith in what is
What will be
What is to come
What we’ve become