Day 5: Transsiberian writing through Russia

Birdie,
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.

The kidney is just the beginning: On the transplant Road

      

                 The last time I blogged I was still on dialysis twice a week two and a half hours a treatment. After six and a half years I was pretty much used to what my life was and how it was working out. Treatment didn’t bother me as much anymore and the pain was almost non existent or maybe I was just used to it. 

BUT THEN…

Just as I was all used to it on September 3, 2016 I received the call that has changed my whole existence. I got a kidney! My transplant happened when I least expected it. With a heart full of prayers for loved ones and friends I went to Saint barnabas medical center for my gift. On September 4 I had a new battery and ready to begin a new life with no more issues. But can you say hold up? 

Yes, we have no idea at least I had no idea that the transplant is just the beginning of the road. Not the end. The real work began after the blessing. 

Let’s talk about recovery shall we? 

I have been transplanted about three months now and currently in the hospital in a state I don’t even live in. I came to visit my mom for the holidays and my creatinine got too high so here I am admitted and awaiting. However I digress, I am still mighty blessed! Every day. 

When you first get a transplant you need your meds every twelve hours. The amount of pills vary from 20 to 30 Pills a day depending on how your organ is settling. See this organ was never yours. It’s a gift so you need anti rejection medications so you won’t loose it. You must work to keep it. This is why I say the work begins after the blessing. Along with medication comes recovery from a long suture on your belly. I had 20 some odd staples holding me together. Its difficult to walk but as the days go by you begin to feel better, more alive and healthier. My hair grew inches and my nails that never grew began to grow. My skin glowed and I became, though still recovering a new person. 

It is a difficult period in my life but full of miracles as well. I am getting there. Trust that I will. 

Getting used to the meds and the doctor twice a week in the beginning takes some getting used to. 

Blood work and urinalysis every week

Stint removal and fear of any little twinge on your access site wears on you but then you think about all of those years on dialysis and you’re mighty blessed and grateful despite side effects or anything else that comes along the most important thing to remember is that someone who died gave you life! 

This is a path. It has been my destiny thus far. I am on a road after all and I never forget that every road has hurdles and bumps and some even have mountains to arrive at the other side. This is my road and although sometimes it’s difficult and a trial I am fully faithful that God gave me this kidney and road for a reason. With his help, guidance and blessing I have my new battery and I’m ready to walk! 

Stay blessed and grateful! 

Organizing my Life…On the transplant road

          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.

A Place of Ones Own

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.

Putting your big girl pants on…On the transplant road

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.

 

 

 

Gaining perspective, on the transplant road

It’s funny how your perspective on life can change in a minute. I am not ashamed to admit that once upon a time not too long ago I was certain this disease would kill me. I was sure because of all I have been through with this illness that I would eventually loose the fight. You see what goes on during a dialysis treatment is very precarious. The human body was not meant to take such punishment over such a long period of time and I have been on this road for over five years now. Aside from treatment I have suffered serious illnesses that have also put me in the hospital like c-dif and infiltration to my veins. Worst of all too much fluid was once removed causing excessive cramping in my body enough to require morphine to help with the pain. For those who don’t know why cramping can be so dangerous it’s because your heart is also a muscle and it can fail and cause severe heart attack if it cramps. Therefore you are rushed to the hospital because dialysis centers can not treat you for any other medical conditions and can only administer Tylenol for pain.

I know that anyone who has ever been in a position where they feel their life threatened can become quite vulnerable and afraid. When you get sick like this and it lasts for this long it takes a toll on mind, body and spirit. Everything comes into question. You even wonder what you are paying for especially after dialysis when you’re wracked with pain and no one can really help you. The pain is where no one can reach so you bare it. Week after week, two times a week, year after year waiting for the light at the end of the tunnel. You see friends from your center give up and pass on and you cant help but wonder will I be next cause I’m tired and this hurts.

About two months ago I had the greatest fear I have ever experienced. I woke up with half of my face numb. When I looked in the mirror I noticed the right side of my face would not function. Immediately I thought I had suffered a stroke in my sleep. Along with the pain behind my right ear I was sure my days were numbered if I didn’t get to the hospital quick. I am a functioning panicked person though so with tears in my eyes I wrote a letter to my children in case I didn’t make it out. I stated every reason why I love them as much as I do as a whole and individually. I told them what to keep after I was gone. I told them it was ok to mourn but not forever and to take care of each other and remain close. I still have this letter because by the grace of the universe I am still here, fighting.

At the hospital I was grateful to learn that what I had contracted was called Bell’s palsy caused by limes disease which I didn’t even know I had. Sometimes you don’t get a bullseye or an itch where you’re bitten. This was the reason for my numb face. I had never been so happy to hear anything in my life. This was surmountable. I could get through this and be ok but it had also changed me. I had gained a new perspective and things began to change in me and in my life. The insurance I had fought for to make my transplant possible finally came through after almost three years. I now have the possibility for a normal life that won’t be wasted once I have it. You can bet on that! I often tell my doctor that once I receive a transplant they will be able to give it to someone else when I die an old old lady because that’s how well I will care for it. I will not squander the gift I will be given and I will be grateful every day for it.

Today I am still in the fight but with new armor and I will win this fight. I have dialysis today but it’s no longer a death sentence for me, now I see it as a stepping stone to recovery. A way to keep me healthy while I wait for my deliverance. This illness has taught me just how strong I can be under difficult circumstances. Nothing will ever seem too difficult for me again. If this is to be my trial I will stand and face it. After all I can finally see the light at the end of the tunnel and I will walk every step until I’m free.

On the Transplant road…

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.

EllieBloo