Suzan,
I read your post and I cannot tell you how inspiring your story is. You possess
a strong will and a huge amount of no-nonsense. That's the spirit needed to
deal with this crap.
I wish you all the best in the future, it seems like research, research,
research is the key to what works for each individual the best. Thanks to all
the advances in medicines and trials going on, there are lots of options. I'm
sure you'll find your way.
Peace,
H
Suzan Collins <[EMAIL PROTECTED]> wrote:
Hello every one
I must say that I am going to continue posting to all the sites that I have
been. I have been off for two weeks but continued to check my emails. I agree
with those that say don't sweat the small stuff, of course my motto as of June
2004 was I don't sweat the small shit (excuse the language) because everything
is small compared to having CML.
I followed my motto at work for as long as I continued to work. For most of you
that did not know the Lord led me to work in a locked up facility for juvies.
It was a prison. The Lord took my life in his hands daily, because at any
moment those boys could turn on a person and I was at risk of being assaulted
daily. I never worried about that. In 3 1/2 years I was assaulted once and the
kid was mad at me for doing my job. I did not hold that against him. And for
several years the kid respected me for doing my job as faithfully and dedicated
as I could. I worked with hard core boys, boys that had been sexually molested
and sexually molested others in return. I worked with boys who only knew how
to live the life of their gangs, drive by shootings, getting into gang fights.
Some of these boys could not even tell you how many times they had been in
fights or shot at someone else. But they could tell you a story with every scar
they had. They could tell you about their horrible home
lives that led them to the place they are at today. Doing time for their
crimes. Most of these boys would have to be shown that someone cared enough
about them that it did not matter I would not turn my back on them. The Lord
knew what he was doing when he led me to that type of work. Never in a million
years would I have dreamed that I would work in a prison facility for boys ages
11 to 21. Boys that would rather be there where they would go to school, have
three hots, and a cot because it sure beat the alternative for them. Why am I
telling you this story. BECAUSE after these boys found out I was sick how do
you think they treated me when I was out sick here and there. Some were mad at
me because I could not be there for them, to tell them it was okay, so they
screwed up while I was out. It was okay. We just picked up the pieces and
carried on. I never turned my back on them, and they knew that no matter what
they did I was there for them. Shoot these boys new I was sick. Talk
about EMPATHY!!!!!!!!!!!!!! They would say you don't look very good today are
you sure you feel like working. NO I did not feel like being there but I
continued to work as much as I could. Talk about EMPATY!!!!!!!!!!!!!!!!! These
boys would ask me Miss do you need help getting up the stairs? We would be glad
to help. Talk about EMPATHY!!!!!!!!!!
Where is our EMPATHY for those new CMLers. I consider myself still new. I was
dx in June 2004 and without this site and a few others I go to I would have
continued to see the doctor I was seeing in Texas. Boy am I glad I came to a
site that I could chat with others like me. Find out that with my doctor in
Texas not listening to some of the things I would complain about, was the very
thing that others out here had already experienced. I DID NOT FEEL LIKE A
FREAK!!!!!!!!!!!!!!!!!!!!!! OR A WHINER OR COMPLAINER. Bless Rob and every one
who takes there time to post out here and encourage others. Shame on those few
who can not seem to work the delete button without complaining about what "THE
SMALL STUFF".
Yesterday when I saw the new doctor I found out just how valuable getting
information from other CMLers is. I complained out here about my doctor. I was
encouraged to find a doctor more familiar with CML. I am so glad I posted and
everyone responded.
My doctor in Texas would do a WBC one vial of blood and tell me "Oh you are
doing fine your CML is under control". Yeah sure it was here at Vanderbuilt
University Clinic in Nashville, TN my new doctor had news for me I was not
expecting. She informed me after doing blood test ( 7 vials of blood) plus she
did another bone marrow biopsy (which they put me to sleep for this one). That
DUH my doctor in Texas did not know what he was talking about. He is the one
that had lowered my dose of Gleeve several times to 200mg for a month at a time
when I complained about side effects. The new doctor took a look at me all my
records from that doctor and now she gave me news I was not expecting. I am not
tolerant of Gleevec which is apparent from all the side effects I have been
expericing since I started on it in June. Oh and I haven't responded to it like
I should be. Oh and by the way do you have any brothers and sisters because it
looks like you may need to consider a bone marrow transplant.
Talk about a shock. Now the point of my long post is PEOPLE quit sweating and
complaining about small stuff. There are major issues for people to talk about.
HIT the delete button if you are not happy. That is what I do. I had promised
my self I was not going to be a SMALL person and respond back about all the
bickering. ROB I TOLD YOU ONCE I WILL TELL YOU AGAIN. THANK YOU FOR THIS SITE
AND TRYING TO CONTINUE WITH IT ON THE GOOLGE SITE. With out you and others who
truly believe in continuing without turning your back on informing people about
CML and having a place to share stories, fears etc. I would never have known
that I was not doing as well as my original doctor had led me to believe.
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