As I started thinking about putting this blog together, I started looking back through the bits of information that I've saved since this whole segment of my life began. So much of the beginning, and quite honestly, major portions of my life since then - are not vivid in my minds eye. I remember "blurs" and bits and pieces. I am thankful that I saved copies of things that I wrote to help me remember, but it is still so painful to read and re-live the horror that most of it was.
I found this email in an email folder. It is an email that my now husband, Doug sent out to our friends and family shortly after my body started to shut down and the Doctors were forced to help us find answers. Here is what he wrote:
Email Dated May 13, 2005 by Doug Stinton:
Dear family and friends,
We thought that it was about time to update everyone
with the happenings in our world. We have to
apologize for not being very good about keeping in
contact as we should have. We’ve been fairly
preoccupied, and as we haven’t really had any solid
details until just recently, we thought it best to
just wait until we had some definite information.
As some of you may know, since last fall Autumn has
been battling a number of odd health issues - seeing
different doctors, trying different medications, and
patiently trying to figure out what remedies might
help. The constant tests, blood-work, etc., has been
very frustrating as each time, there was either no
diagnosis, or the medication would work for a short
time and then the symptoms would return. This 9-month
ordeal came to a frightening climax on April 27th when
a co-worker had to take Autumn to the hospital for
what they thought was a heart attack. Fortunately, it
was NOT a heart attack! This however seemed to spark
some immediate action from her Primary Care Physician
– FINALLY!
Over the past two weeks, it seems like we’ve been in a
doctor’s office more than we’ve been home. The
“Vampires,” (as Autumn affectionately refers to the
lab technicians), have drawn plenty of blood on an
almost daily basis, not to mention some other
“wonderful” fluids – but we won’t bore you with the
gory details!
Anyway, we began to make big progress when she was
sent to an Endocrinologist just over a week ago. Upon
walking into the examination room, he immediately knew
the problem. The consultation turned into a 2-hour
examination, with tests being scheduled immediately.
YEAH! Finally some PROGRESS!
A week and a few more tests later, and a MRI yesterday
(May 12th), we received an official diagnosis of
CUSHING’S DISEASE. It is a very rare condition
affecting approximately 10-15 of every 1 million
Americans, but is very treatable with good success
rates.
Simply put, Autumn has an enlarged mass on her
pituitary gland that is causing her body to produce
too much cortisol. Cortisol is naturally produced by
the body (by your adrenal gland) to deal with stress.
It is also a natural steroid. When too much cortisol
is produced, a laundry list of health issues ensues.
This is what is causing the severe edema, (this and
low potassium is what caused the heart stress that
sent her to the ER originally), fatigue, muscle
weakness, blurred vision, high blood pressure, and
multitude of other symptoms that have contributed to
her deteriorating health over the past few months.
Now that the “culprit” has been identified and
located, the next step is another 48-hour test period
that will be completed on Tuesday morning in the
doctor’s office. Then we consult with a neurosurgeon.
As for Autumn, some days she feels better than others.
The docs have given her some medication to help keep
her as comfortable as possible. The nurse said she
seems to be handling it pretty well – Might as well
have a sense of humor about it! Really, the
continuous state of blurred vision and sleepless
nights are the most frustrating – as you all know, she
hates to be idle! We checked out some audio books
from the library today. That should help the boredom.
We are hoping that things continue to progress
quickly. It is a learning experience for both of us.
We will keep you all posted as things develop.
If you would like to know more about Cushings Disease
and Cushings Syndrome (the disease is the tumor, the
syndrome is all of the symptoms that develop), there
is a very detailed web site at www.csrf.net. It has
some great “survivor stories” that have given us a lot
of hope.
We hope you are well and we will update you again as
we know more.
Doug
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