As I worked on my WEGO Judging over the past couple of weeks, I've found
that there are some incredibly strong women (and men) out there living
their lives everyday, with one, two, three and more chronic illnesses,
syndrome, and pain. They have also been through the HELL of
hospitalizations that lasted for months, endless surgeries,
transfusions, being not even able to eat and being fed through an IV (as
I did in 2010), and some of them like myself, at that time the doctors
really DID NOT KNOW what was wrong with me. My own PCP has made the
statement since then on several occasions that he was extremely
concerned back then I was going to die. Endless numbers of specialists
came to see me... most of them were of a foreign decent, and frankly I
could not understand what they were saying to me. Many of them at the
time, didn't really know what the hell "Lupus" was. They blamed some of
my illness on the Lupus, yet, they also were treating me for what they
told us later was a "collapsed" bile duct. It was literally leaking
poison into my abdominal cavity, rather than it going out of my system
and being filtered out by my intestines, and out as it should. I had
several "tubes" running outside of my right side. Later I had to even
come home with them still in place, and we had to watch the fluid that
came out into the bag, to make sure it was becoming more "clear" and not
bloody etc. I went through that for several weeks. For at least 6 weeks
I never put a drop of food or anything to drink in my mouth. There was a
huge bag of "nutrients" that was white, and I was told it was a certain
concoction mixed up by the pharmacy for me. I went through nights that I
barely knew where I was. In fact, I spent mt 50th birthday having yet
another surgery. Jim, my son, and my Mom were there because they had
told me to "call my family" in, "just in case".... "Just in Case"???? I
had at least 8 or 9 other IV bags hanging and pouring into me, pain
medications that I watched the clock for and begged each moment I knew I
could have more.... I really have never "told" this entire story, from
start to finish, here or on my blog. I have put bits and pieces about it
over the years on both, as well as it will be in my book. It took my
system weeks to even be able to withstand a regular sip of "Coca-Cola in
it. It would put my entire stomach and intestines into a "tailspin" and
the next thing I knew nurses had to come in and change my entire bed,
put me into the shower (dammit they never warmed it up enough and this
was the middle of February and one of the coldest Winters in TX since I
had been back).... any thing that was "food" "stunk" to me. Jim would go
and try to find something I could stand to even remotely put into my
stomach, and even certain kinds of bread smelled so bad to me there was
no way I could take even a bite. Why I am telling this now here, I am
not sure. Probably due to one of the blogs I read over the past few
days, and her own battle with what later was diagnosed properly as
Crohn's. But, more than that, it seems each year that February rolls
around, which my Dad's birthday was on the 2nd, Ground hogs day, and
mine of course just passed on the 15th, almost a Valentine Baby.. and it
brings all of those weeks and weeks, and honestly months back into my
memory. How ill I really was, and how it truly it is a miracle I am here
today to type about this.... so ALL of you... everyone of you that have
the stamina, bravery, the "guts" (no pun intended), the wear with all,
strength... and many more descriptive words to say how incredible you
are to tell "your" story. Whether it be autoimmune in nature, arthritic,
FM, MS, and all of the other Chronic Illness and Pain so many of us
endure... so WE can go out and tell others "it is okay"... you are still
you.... you are not "less than", that life can be full, and fun... you
just have to sometimes decide upon a "new kind of normal"... that is
what I have to do, and even now... "normal" can change at any given
time... I am THANKFUL, to be here this morning and able to tell a
portion of my story... and I am thankful for my family, my spouse, kids
and Mom, that support and love me, even though I feel like I disappoint
them at times... and my true friends here that also love me for me...
sick, well, mad, depressed, happy, or whatever I maybe at that moment,
those out there know I mean you... that support and love me
unconditionally, with Lupus, with Sjogren's, now with dentures and not
my teeth, with the joints replaced, and the pain pump hanging from my
right side... I am still "me"... and I feel blessed.... thank all of you
for accepting me no matter whether brain fog hits, or I find myself on
the sofa for the day, or I am up cleaning and doing "normal" things.... I
am blessed.
