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An
Adventure with
life- continued
Page three.
What, you're still
reading. I'm impressed.
H ere we go. I figured I'd write
more. Now its December when I'm continuing on with my
story. Leaving off in the middle of Julys here I go
again. July 16th I wake up around am with a pain on my right
side. Boy does it hurt. i call Doc B at 7:30am his concern
was that it may be a blood clot. Off to the hospital I go for my
second nuclear xray and chest x-ray. Nothing showed up on the
x-rays. I call Doc Caifano and got right it. He examined me
and decided it might be pleurisy. Hey one more contribution to
Lupus. By Friday night the pain had almost gone away.
Hooray.
July 17th Great day!!!
A true graded five day. I had lots of energy and I was excited
thinking I'm healthy. July 18th came and the pain came back worse
than it had ever been. Took advocate. Here I am a somewhat
educated person and didn't read the label right and instead of taking
them one or two every six hours I was taking one or two every four
hours. I really think I needed it. But after
discovering how they should be taken, I felt better. One of the
things I craved most, must have been the steroids, was a pineapple
upside down cake. And yes, I had a friend Kathi Popowich who came
to the rescue and made me one. Woo Hoo.
It still amazes me that
all my friends and family have been there for me. One of my
dearest friends Debbie Roberts is so worried about me. I'm pretty
sure I don't have to worry about me cause she's got it all.
<smile>.
Now here's a funny
story. July 19th Monday. Pain on my right side hurt so much
that Ken had to help me get out of bed. I needed to get work
cause I wasn't going to let this beat me. In any case, most of
the day I was feeling sorry for myself and worried that I might be
loosing my independence. I can't imagine me loosing that.
It was like being in the hospital again when I was unable to feed
myself and Regina was feeding me. In any case later that evening
I took my shower and still concerned about not being able to get out of
bed. After my shower I climbed into bed, waiting a few moments
and got out. Phew, I said I can do it once. So what did I
do again, I climbed back into bed waiting about 15 minutes and got
out. Wow I thought I did it twice but could I do it again.
So now I've made enough noise and my family comes upstairs to find out
what all the noise is. Before they get to the top of the stairs I
have climbed back into bed. Now they're at the bedroom door
asking me what's going on. I told them I wanted to make sure I
could get out of bed. Imagine that, they started to laugh at
me. Then again, I started to laugh at me too.
Funny thing this mind we have and the tricks it plays on us...
Good news hits on July
22. Doc B said we can start the infusions next week. My
blood count has come up to over five. I'll find out tomorrow the
details. I was so excited. My treatments are to
begin. I'm on the way to remission. My first infusion will
be July 31, 2004 - Cytoxan 1250, MSNSA 1250, Zofran (to stop the
nausea), & IV fluids.
Have made several
discovers over the last few weeks. One of them was my first
cousin Janet, was diagnosed with Crones then found out it is
Ulceritis colitis both of them are autoimmune diseases. My
father had psoriasis an autoimmune disease. So I figure I got
this Gene from the Jones side of the family. No one else in
the family has or every has had Lupus. Hey someone has to be
first.
Went to see Doc Caifano
we talked about Lupus and how I was feeling anxious
about it. He had such a caring disposition that he put all my
anxieties away. Sally his nurse continues to be there for
me. She too cares about me. I'm not just a statistic
in any one of the three doctors I have. I find that so
wonderful. They truly care about me and then they take care
of disease. I am blessed.
The high dosage of
steroids 40mg a day has put all my blood work in the normal
range. Do I really have this disease? Is it a figment of my
and everyone else's imagination? Could the test and biopsies be
wrong? No this isn't a dream Doc Caifano said and
asked me if I was serious. I think at that moment I was. I
did want this to be a bad dreams. It isn't and life must go
on. I will not let it beat me. Period.
Ok so we move to
- yes, can imagine there is still more. Its now late December I'm
still writing in my journal not as much but still writing trying to
keep up and I will so keep looking for updates. Who knows maybe
there'll be a page four. Can you stand it. <smile>
If
you'd like to know more, drop me an email and I will continue with page
four updating this part of my life. Nothing fancy, watching my
blood work stats trying to stay healthy and becoming wiser and
continuing to learn about this disease. This life long
committment. Perhaps, but unlikely there will be a cure in my
life time.
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