JUNE 19, 2013 JOURNEY TO DIAGNOSIS
PART 2
Posted June 19th, 2013 by Michelle Ghiassi
Blue Shield has denied, and why the
second surgery is important. I am almost gave up on this whole process
yesterday but the emotional support you have all provided me with your comments
to keep fighting and moving forward.
Imagine this was the Journey to the
First Surgery. And how exhausted you are reading this. I am now headed to my
second surgery. Time is of the essence. You are only half way through my story.
PART TWO: JOURNEY TO DIAGNOSIS
NEW PRIMARY, A SMALL VICTORY
In 2011, I found the new
primary. I took my organized medical history that was three inches
thick. I explained my history, who I was and what I did for work (an
attorney). The new primary looked at me and said, you are not crazy,
clearly there is something going on with you physically, based on your medical
history, results, and everything you are telling me. I did not have to
prove myself with her.
This was the beginning of reaching
the diagnosis. I explained I thought I had Cushing’s. She told me
how rare it was. We agreed to continue with testing and monitor symptoms.
MONITORING SYMPTOM AFTER SYMPTOM
One month, my blood sugar went up and
down. I tried to use a dietician from my HMO group, they only have one. I
stopped going to her when she said that since I was undiagnosed it was
difficult for her to help me and I should come back when I had a
diagnosis. Since I was using the private natural remedy doctor who was
helping me loose weight but costing a lot of money, I was trying the HMO
process to switch over to save us money. Once again, the system failed
me.
I checked my blood sugar almost 8
times a day for two months. My primary was puzzled as well. I did not
have diabetes but my blood sugar was borderline. I religiously logged my
food and sugar level. I was determined to prove myself to everyone that I was
doing everything right. When I was on the treadmill, my blood sugar would just
drop.
PARANOIA, ANXIETY,
DEPRESSION SET IN
The next month, my blood pressure would
go up and down. I was so paranoid. In the middle of the night, I used my
phone to video my heart monitor that I use when I work out to show my doctor
that my heart rate was low and that I was having heart palpitations. She
looked at it and still thought I was normal, not crazy. Looking back, the
paranoia (although founded by physical symptoms), the anxiety, and depression
were all RED FLAGS TO CUSHING’S. I was not acting like me. My doctor told
me that I was the person who would know how I was feeling.
Another month, my iron was low.
My Vitamin D was low and still is to this day. All signs of
Cushing’s. I had acid reflux, which I never had before. I went on
medication for that too. Every month there was something new symptom
wise. When you are going through an undiagnosed health situation it is
important to log everything. At one point I thought I was making it
all up in my mind.
COMMENTS THAT HURT
People tell you stuff like, maybe you
are a hypochondriac, you are obsessive-compulsive, you need another
distraction, you need to diet this way or that way, etc. This is not
helpful. With this disease, it is nearly impossible to explain all of the
symptoms. Imagine your entire immune and endocrine system being affected
whenever the cortisol decides to shoot out of your adrenals. This is why
symptoms vary for Cushing’s patients. This disease slowly debilitates you
mentally and physically. You suffer along with the physical symptoms. Not only
does it rob you of your physical abilities, you lose friends who do not
understand, you loose your job, and you can even loose who you are as a person.
You question everything you know about yourself.
CONTINUING TO DIAGNOSIS
My primary was patient with me this
entire time and reassured me it was okay to keep coming in monthly/or every two
weeks to log my symptoms until we had a resolution. We noticed I could not
loose weight anymore. I was down to 1000 calories a day. Each month I would
change my diet. I went gluten free for three months. I ate high protein
low carb. I became vegetarian for two months.
I NEVER SHARED ALL OF THIS WITH
FRIENDS AND FAMILY. IT WAS EMBARRASSING AND I WAS QUESTIONING MY OWN SELF.
My natural remedy doctor basically
told me it was all in my mind and I needed to try more and stay on the
diet. Once again, I NEVER WENT BACK. Would you?
MY LUCK CHANGED FOR THE BETTER
My primary and I then got lucky, a
rheumatologist was temporarily available in the same office. He had an
appointment right away. Finally some luck. I was diagnosed with
Fibromyalgia that day and put on medication. He reviewed my long list of
symptoms on my legal pad, did testing and made the diagnosis. To this day
I believe that medication did help some of my symptoms and kept my immune
system more calm.
However, with all of our bad
experience with doctors, I contacted Blue Shield and requested a second opinion
specialist for my Fibromyalgia diagnosis. I believe that any diagnosis that can
change your life so drastically should warrant a second opinion. I
went to that specialist, who confirmed Fibromyalgia as well but brought up
CUSHING’S to me.
RULING OUT CUSHING'S WITH
RHEUMATOLOGIST
The two rheumatologist agreed
together to RULE OUT CUSHING’S since it was rare. But both agreed to
think outside the box based on my labwork, there was not something quite right.
2012 TWO YEARS LATER
In May of 2012, two years later, I
was referred to an endocrinologist. We met him right away he said I
believe you may have CUSHING’S. We tested urine, cortisol levels, had
x-rays and MRI done. CUSHINGS’S WAS CONFIRMED.
THREE MONTHS LATER, I was scheduled
for my first surgery of my life. BRAIN SURGERY. I was overwhelmed.
A week before surgery, we did obtain a second opinion. We were told we
were in good hands with this surgeon and surgery should be fine and it was our
only/best option with CUSHING’S DISEASE.
NEXT POST WILL BE ABOUT SURGERY AND
THE DISCOVERY THAT THE TUMOR WAS NOT REMOVED. AFTER READING THIS, YOU CAN TRY
TO IMAGINE THE DEVASTATION THIS HAD ON MY MENTAL AND PHYSICAL HEALTH
THANK YOU
MICHELLE GHIASSI
Please help in any way you can.
Please join this campaign:
http://chn.ge/16BXiU7 This was created to fight Blue Shield, we are
trying to get signatures.
We also have a page on Facebook
called "Flips Friends" that is public
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