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Krista: Scleroderma, Polymyositis, Vasculitis

When this was written, Krista lived in Qatar, far away from her family and friends. (Now she is back home in Romania.) Vezi si: Povestea Mea: Krista

KristaI promised Shelley that some day, I would try to write my "real" story. It's been some time since that day. I tried, yes, I did. But, there's something which kept me from doing it.

Many of you probably know that I have translated "SCLERO.ORG" into my language, Romanian.

My medical translation is so poor, for two reasons:

1. Because I did not have any Romanian documents to help me. Nothing. I spent a lot of time working on it. It is not easy, after two years of speaking English, to start translating things which I have never heard in my own language; especially when I do not even have a dictionary.

However, I did not give up. I know that it isn't a perfect translation, but at least it is something!

Shelley knows that before my page, if someone tried to find something about "scleroderma" or any of these problems in Romanian on the internet, it was impossible because there was nothing there.

It was hard for me, when I started, hungry for knowledge (depressed, upset, being lonely, far from home, from family), to look for all the information, and to find it, in a foreign language.

2. The second reason which makes my page poor medically, is because there isn't too much to say!

I know everyone wishes there was something to give them hope, or something! However, there is nothing. The hope, it is not in the medical books, the hope is in us!

Medically, you can say everything about it in just few words:

We don't know where comes from. We do not know the treatment.

That is all. The rest is how lucky we are to have a good doctor, to get the diagnosis, and to have the symptoms treated.

Krista's son & birdMe? I have got no doctor! I have got my pills in the house, and I am afraid to use them, because, I do not have any idea how to control them!

Mostly, I am very scared about the side effects! And I do not have anyone beside me to give me the real support, for doing that.

I hope that I have enough energy to make it like this till the summer, when I am going home to my doctors, and we will start something.

The story? I am reading all the other stories, and for every one, I am thinking: what is in back of these words? How much pain? How many minutes of loneliness? How many hurts are inside that person, the feeling that is so hard to go on? How much it hurts that we can't walk, or sleep, or eat, or how much energy we put into covering the pains with one smile?

How much does it hurt inside? Not the physical pain. That is there. Take a pill, and may make you fell better. However, how many tears are we crying in the night?

I can't stop myself thinking about that.

We are doing the best that we can. We are writing stories, personal stories, using the words which do not hurt too much the one who is reading it. We are careful to not complain too much. Alternatively, just we are trying the best to help in some way with simple words, which means so much. We just do not say it all.

We do not say how much it hurts. We do not say anything about that scream inside of us. On the other hand, the nights when we are filled with fear That is not right to be that way!

My page is certainly poor in medical content. However, I will do my best, to put in a lot of feelings. I have some humor there. The kind of humor that is in the Pity Party. Moreover, some articles contain the way life is, or is not.

The big surprise that I have had from my page is the emails from people who are healthy, and they told me that my page helped them to better understand the meaning of life. People who do not really know the pain, but they feel that life isn't fair with them. They told me that my words helped them to understand that they are selfish and not thinking, that life can be really unfair with someone else.

I am happy. I am really happy. Since I do help people!

Today, I will start another chapter in my page. In addition, I will be writing about all the pain. The fears, the tears, and all the pain inside of me. It is hard to open up. However, the ones around us will never know how to become closer to us. They want to. They do want to understand why I we are crying when there is nothing to cry about. They need help to understand why we are angry for no reason, or why yesterday, we laughed, but today, we are so sad. Why I am getting upset, when they are telling me that I am looking well.

I want to let them know why sometimes I do not feel like having anyone around. Those are the moments when my spirit screams at life. I have got no energy to smile, or to take life as it is. I must do it, I will do it, but I do have moments when I will prefer to see this earth crumbling into small pieces.

They all are looking at me like I am such a brave person. I want to let them know that I am not! I am as simple as they are. Life put me in this position, which I have never asked for. I am not a hero. I am simply the product of my pain.

That is all I am. Moreover, I am doing my best, to help everyone, no matter if they are healthy or not. We all need help. And the help, it is inside us. We just have to learn how to let it come out.

That is all. Too much? Not enough? I will never know.

I only hope that my words will help some more people.

To Contact the Author

Krista
Email: [email protected]
Story posted 1999
LINKS
In English:
Krista: My Caregiver's Story
What is Scleroderma?
Polymyositis
Vasculitis
In Romanian:
Povestea Mea: Krista
Scleroderma de la A la Z

ISN's Voices of Scleroderma Volume 2

The story on this page is featured in our book, Voices of Scleroderma Volume 2! ISN.

Go to Krista: My Caregiver's Story
 
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