June 19, 2013: Journey To Diagnosis
Part 1
Posted June 19th, 2013 by Mark
Ghiassi
Why this battle is so important for
me. Why I have not given up. Why I want to get the care I need. Why Blue
Shield should consider the rarity of this disease and the journey it took to
get to surgery the first time. Why everyone should have a specialist form the
start.
Be forewarned this is long. I am
sharing this for the first time but feel with the denial of insurance it is
appropriate for everyone to know the battle we have been through and the pain
this has caused for so long.
JOURNEY TO DIAGNOSIS-PART 1
August 2010, I hurt my left leg while
doing water aerobics. Like many of you, I went to urgent care, the day after,
and was told I pulled my calf muscle. I went to my primary doctor (who did not
X-ray me) but sent me to physical therapy. The only place my HMO allowed.
I thought I was going to be out of work for 4 to 6 weeks. THIS WAS NOT
THE CASE.
After rigorously going to physical
therapy and performing exercises every day, my leg would not get better. I was
diagnosed with plantar fasciitis and other things.
FIRST SIGNS
During this time, I started swimming
almost every other day. I had my dad eventually swimming. This was
when I started to notice something was wrong. My dad and I thought I had
pulled my shoulder while swimming because I could not lift my arm very well and
I became exhausted trying to blow dry my hair. A simple task.
My dad said “maybe you should get a
stool to sit on while you are in the bathroom so you don’t get tired with your
arm”. Seemed logical to us. I bought two stools, one for the shower
and one for when I put on make up or blow dry my hair. Now looking back,
why would a 38 year old person like me need this help in the shower when I had
not been injured?
Little things, daily things, like
this started to happen over time. After so much swimming and physically therapy
I could not flex my calf muscles and I would tell Mark, isn’t this weird? He
would agree and say well maybe your body is adjusting or you have not built
enough muscle in your legs yet since you were immobile when you hurt your leg.
After swimming, I would come home and
sleep for several hours. I ended up in Emergency one of the times after
swimming that day because I had chest pain and could not breathe. I told Mark
it felt like a snake was wrapped around my chest and stomach. ER did
labwork and the labs showed a high white blood cell count. My doctor
never did labwork the entire time. I ended up going to a cardiologist as
well.
One day, I was walking to my kitchen
and lifting the Brita water out of the refrigerator, and I could not lift
it. It was too heavy. To this day, this happens with my arms, they turn
to jelly and become weak at random times. This was all the BEGINNING of
CUSHING’S. Red flags I never knew existed.
DEALING WITH DOCTORS COMMENTS AND HMO
I explained this to my doctor
multiple times and I kept getting brushed off. I went from specialist to
specialist for my pain. With the HMO I was required to obtain an authorization
every time and appointments took one or two months to schedule. I went to pain
management, a neurosurgeon, and even an orthopedic surgeon. I was diagnosed
with sciatica, a bulging disc. I was told my pain should not be that bad etc. I
was told to loose weight. I was not obese. My doctor even accused me of
being bipolar, never had a problem a day in my life. I knew something was not
right.
RETURNING TO WORK
EIGHT MONTHS later, I finally
returned to work, even though I still had pain in my legs and body. I
have worked since the age of 16 at various jobs. 8 months was a long
time.
The day I returned to work, in April
2010, was one of the worse days of my life. Three hours into work, I received a
call that my dad had a heart attack. That night, my dad died
unexpectantly. My mom and dad were married forever it seems. This
was a shock to my mom, sister and me. My parents are everything to me,
both of them worked really hard to give my sister and I what we needed to be
successful adults in the world. I can not begin to express how much love
I have for my parents. I have nothing to complain about.
MORE SIGNS OF CUSHING'S: That
time is a blur. Two weeks later, I attempted to return to work.
While driving to work, on a freeway I regularly travel, I was suddenly
lost. I called my husband and told him I was confused I was on the 405
freeway and wasn’t sure which way I was headed. I am a regular driver,
never had a problem like this. It scared me. This happened to me,
these moments, when returning from court for work.
I ended up in ER again with the same
puzzling results. My doctor took me out of work again for anxiety.
I HAVE NEVER RETURNED TO THAT JOB.
I can not remember exactly when I
decided to switch primary doctors, best decision of my life. I remember
the moment though. Mark and I were in my primary’s office and she said “you are
never going to litigate again” and made reference to me being bipolar.
Mark and I left. We felt as a doctor she was not providing me with answers.
The next specialist was a
hematologist. He listened to us and had labwork done which pointed to
rheumatology. He confirmed my labwork was inconsistent. Once again,
another referral to the next specialist. HMO process again. The
rheumatologist could not schedule an appointment for almost two months. I
repeated labwork with her. It was a waste of time. I was told there is
nothing wrong with you, loose weight that will help.
I obtained a referral for mental
health because I wanted help with everything. I was not the type of
person to take a lot of medication but knew I had a fairly high tolerance for
basics like aspirin and allergy medication.
Mental health therapy started off well. I even took my medical file to explain my situation that I was
going through an undiagnosed health crisis. After months of this, my
therapist told me I was overweight and a lot of this was due to weight gain and
anxiety. I NEVER WENT BACK.
By that time, I had hired a natural
doctor, who was a personal trainer, and acupuncturist. I had lost close
to 30 pounds and was doing well. I was on a rigid diet. I kept a food log
every day for several months.
I returned to my hematologist, who
would not give up on me, and I found a new primary with all of this going on. I
was desperate for answers.
I researched all of my symptoms on
the computer and came up with Cushings’s. I told Mark this is what I
have. All of my 20 or more symptoms make sense. Mark probably thought I
was loosing it. BUT I WOULD NOT GIVE UP.
No comments:
Post a Comment