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Gisele's Story
This is the story of my amazing wife Gisele. 27
Years old
Gisele was always very active, energetic, and full of life . This was
until shortly after our second daughter was born. She began to get
migraine headaches and severe joint pain in her hips and hands. After
many many trips to the DR. and countless prescriptions for pain killers
,They still could not find the problem. She began to lose her balance
and her legs would just give out while she was walking. Even falling
down the stairs with our new baby. A few years pass with the headaches
and joint pain getting worse ,she also started getting sores when she
was out in the sun. For this she got cream, no answer why she was
getting the sores but a band aid fix. Continuing to see the Dr.s
regularly and getting referrals to see different specialists they still
came up with nothing. They tested for lupus and ruled it out.
She was then sent to see a psychologist who told her there must not be
anything medically wrong with her and that it was all in her head.
As she grew sicker and sicker over the next year or so she began to have
severe back pain and apparent bladder problems. Another trip to
the Dr.'s office got her bladder infection pills. To no surprise the
pills did nothing for it. As she got worse she ended up seeing another
Dr. who sent her for a kidney biopsy. When she went for her
appointment they quickly discovered she was in complete kidney failure.
She was immediately set up with a hemocath and started on dialysis .July
29/07.
Now it was official ,She has Lupus. So much for it ALL being in her
head.
So she now had dialysis three times a week for
four to five hours at a hospital two hours away from home. Being
she is a very independent and Strong person she stayed at her sisters,
who lives closer to that hospital and drove her self back and forth and
sometimes taking a cab on the worst days. They also discovered on
dialysis the she has Lupus anticoagulant and ended up with huge blood
clots in her arm, so they started her on blood thinners. None of the
usual and very high dose medications she was getting for the Lupus were
working as well as the seven different BP meds were not helping her
insanely high BP. After six months of this they determine her lupus is
Non responsive SLE. We began to look for alternatives on our own. We
were looking into a stem cell study when the inevitable happened on Jan
13/08.
Her sister found her in the morning half on couch and half on the floor,
unable to move and only able to mutter some sounds. An emergency
ambulance trip back to the hospital where, after a CAT scan they find
the problem. A stroke in her brain stem called a ponteneal bleed. An
area of the brain where all brain activity pass through and controls all
functions like breathing, body temp heart and everything else the body
does with out having to think about it. It is also an inoperable part of
the brain so they could not drain it to relieve any pressure. The
cause was high BP ,Blood thinners and Lupus thinning the blood vessels
in her head.
The waiting began. The head Neurologist pulled her mother and I a side
and broke the news that her chances of making through the night were not
good due to the swelling and the effected area. To there amazement she
was able to fight through the night in the ER. She was still breathing
on her own, her BP stabilized and was able to answer a few questions by
squeezing her left hand. As days passed we lost communication
completely due to the swelling. Another week passes and she begins
to regain the ability to squeeze her left hand and wiggle her left foot
and soon after her right eye opens and she is able to blink. This
state continues for the next three weeks. By week five we get a
hint of a giggle from her. Definite to us but the Dr.'s feel it
was probably involuntary.
We have a meeting with the specialists where they tell us after this
long they don't expect too much more improvement especially with all the
under lying complications with the lupus. As a few more weeks went
by it seemed they may be right, That is until day 39. Out of nowhere she
started talking. Soon after she began to move her left arm and leg
and was able to sit in a wheel chair. With in a month she was
standing on one leg between the parallel bars. Now the right side
is starting to get movement, slowly but its there. Now she can have a
full conversation and eat on her own. She has come so far and
fought so hard that she has truly amazed everyone. Her battle with all
of the Lupus complications continues and so does she. Never to ask
why not somebody else, She just says" God told me when i was sleeping
for so long that ,He was not ready for me and to keep fighting, And I
will ". With her strength ,Prayer ,love and support from family and
friends anything is possible. Gisele is a true MIRACLE.
There are many other problems she has had that I had to leave out so
this didn't end up to be a novel but a glimpse in to some things she has
gone through as someone effected by Lupus. To all those who are effected
by Lupus, Family and friends included, I just want to say, Count on each
other and your selves. Always push the Dr.'s to get to the bottom of a
symptom and not give a quick fix. Talk to everyone you know about
Lupus so one day they will be able to catch this disease sooner and
prevent this from happening to others over and over. Thank you for
reading Gisele's Story.
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