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An
Adventure with
life- continued
Page two.
What, you're still
reading. I'm impressed.
S o where am I. Ah yes, after the
biopsy.
I was feeling pretty good, still weak but I could walk again take
showers on my
own without much trouble. I think something that was degrading to
me, was
my first wash by the nurses. This happened on Saturday, I know
that's
their job and all and I know if the position was reversed I would want
my
patients to be clean. But being the recipient was a terrible
feeling for
me. The first degrading thing I felt was someone feeding
me.
Of this experience those two things affected me the most. Isn't
that
strange, I can have children and literally be exposed to the world but
being
dependant on someone else is a frightening and degrading experience for
me. Ah well, I lived through it, experienced it for the
first time
and now I'm moving on. Hopefully, not to experience it
again. I
think those experiences scare me the most of going back into the
hospital. Along with the feelings of not coming out.
Hmmmmmmm.
Let's see, it’s now Tuesday and I've been in the hospital six
days and
getting
itchy to get out. I want to go home. I've watched enough
TV,
listened to enough screaming patients and watching people die.
Hmm and
here I thought it was getting better. One of the best
things was
finding the refrigerator on my floor, they had lots of Jell-O.
<bg> I was also so greatful to my Peter who came up
to see me almost every day. Wow great gifts of friends I have.
Also, one of the greatest things that did happen was meeting a
wonderful nurse
by the name of Jasmin Nunez. She has had lupus since she was 16,
has lost
the vision in one eye but has accomplished so much. She took the
time to
sit with me, talk with me, cry with me and explain that Lupus is not
something
that can stand in my way. To take this disease one day at
time. To
keep my faith and to accept it. What a gift she was to me.
How
gentle, caring and out of the box nurse she is. I truly wish her
much luck
in her goals, one of them to become an RN. There was also a
wonderful house keeper that spent
time with
me. She always has her smile, nothing bothered her and she also
took the
time to chat. We spoke about many things. This women
was
amazing, she has had many trials and tribulations in her life, yet she
continues to do the best she can with what she has and amazingly she is
not
bitter but happy. Her personality, her willingness to talk to me
and
anyone else, she treated me wonderfully and helped me to just be
me. Her son was leaving for
Oh we were talking about me wasn't we. And we all know I like to
do that.
<BG> By Tuesday I wanted out of the hospital as I said
earlier. Dr.
Bernstein
was still concerned that my white blood count (WBC) was low - two
point
something
or other. I told him not to worry because it would be much better
if I
were at home. I was so tired. People would come in at
July 4th weekend was a
quiet one. We went over to the Carmel's they had a small
gathering and fire going. I think that was one of the most
memorable weekends I have ever had. Yes, I truly am blessed to
have good friends and supporting family.
I left the hospital with several prescriptions written by Dr.
Kendula. I
was on prednisone 60mg, CellCept 1000mg, foxamax, protonix. And
boy was I
tired. I think I slept for 24 hours. By Thursday afternoon
I was
finally feeling like "I'm home" and it felt good. (Let's see
today is October 22 and I am referring to the journal I have
started. I'm
not good at keeping those kinds of things up to date and I truly have
CRS
disease. What you don't know what CRS is???? Hmmmm let me
tell you -
Can't Remember Sh.... So I am having to refer to my journal on some of
these
things. I do need to update it.
Ok now I'm home and everything starts to catch up with me. It was
4th of
July Weekend. My voice is very scratchy, had no taste, had no
appetite
and was in lots of pain from both my mouth and bottom. (Ain't that just
dandy.) I had thrush in my mouth and nothing seemed to clear it
up.
We tried the rinse that didn't work so I started taking a pill for
it. Hey what's another pill. I thought I might have a yeast
infection so off the GYN
I
go. Oh how I hate going there. I would rather have a double
root
canal than go to the GYN. It amazed me that I called and got in
right
away. Again, the angels up above must have known how important it
was. Getting into the GYN sometimes can takes weeks and/or
months.
Dr. Jahoo Bharusha, she has been my GYN for over twenty years.
Of every
one of my doctors she has been there for me through quite a bit in my
life. When she saw me for the "yeast" infection. I told
her what was going on, where I had been and what the treatments were
going to
be. She was so tender, caring and kind when she did her
exam. (Another job I wouldn't want for the world.)
She knew
it wasn't a yeast infection; she tested me for herpes and also
mentioned
it might
be Bachetts disease and maybe I would need a biopsy (bx).
(Whatever that
is.) We also made arrangements for a yearly exam. (Hadn't had one
in five
years - it was time.) That was scheduled for a week later.
I had
night mares off and on all week waiting for the yearly exam. Dr.
Bernstein talked with Dr. Bharusha about everything. He again
amazed me;
he made it a point to talk to each of my doctors. He is the
primary for
me on Lupus. They both agreed on treatment after the test results
came back.
By July 15th all the tests from her office came back. It was as
if she
was very elated that I had herpes and not Bachetts. By now my
bottom was
very sore. I had open lesions and it hurt to go the bathroom, to
sit
down and even to walk caused pain. My mouth hurt. I think I
was in
more pain now that I had been throughout the entire ordeal. I was
only
sleeping 3-4 hours a night and then I was rearing to go. And did
I mention I was
also
working. I went back to work Friday after I got home from
the
hospital. I didn't want to stop. I was scared that if I
stopped I
might not start again. Isn't that foolish.
OK - this ends page two. Yes, I think I am writing a book
if you
want to continue reading go for it. If not, you're not going to
hurt my
feelings cause I'm not going to know if you did or didn't....
<VBG>
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