I am
sitting in the waiting room tapping on my tablet as I hear my name called, I
look up and the doctor looking at me. I immediately realized that I was right.
I interpreted and read the images correct.
The doctor
leads me to his office and with a very serious tone of voice and the manner and
compassionate look I knew! I tried in a
last effort to try to change to subject to tell him about the new nosology and
about the papers that were published.
He looked
straight though me. He knew what I was doing. I knew what was coming. I had
prepared myself, but still it was difficult.
It is not easy to be a patient expert. It is not easy to know so much to
be able to diagnose yourself, to be able to interpret your own images. It is
even dangerous at times.
Doctors
have not taken me serious for years. Many have seen me, but ignored the most
serious complaints refusing to further investigate while I kept saying that I
had serious underlying issues. For the
last 6 years, I have been bouncing from one specialist to the other. I have
seen several a neuro surgeon, neurologists, orthopedic specialists,
revalidation specialist, you name the specialist I have been there.
My right
leg, and yes life is so funny, my good leg, has a partial knee prosthesis that
has become loose after a couple of years.
My knee luxates around the prosthesis regularly and I have regular
infections on the prosthesis which we have been able to contain for now. The bone is so damaged that no future
prosthesis will be possible. Outlook is
very grim with possible amputation.
It took me
until two days ago, for a doctor to tell me finally the truth! All the other doctors just kept sending me
away, ‘you are too complex’, no one telling me the truth, no one telling me
what is going on. Sometimes test where
made or images ordered, but only in bits and pieces never as a whole.
Ms. Frank,
you came to me because you had function loss and it is not between your
ears. You are not crazy. You have a very serious problem. Test confirm that also your left arm……………….
Stop. My
head started racing in my mind. I heard
the doctor talking. He was talking slow, soothing but calm serious. I wanted to scream. My left arm.
I wasn’t prepared for that. I was
not ready for that. I am not going to lose
my left arm yet. That is why my left arm
is luxating, that is why I was falling all the time, I am going paralyzed. This is going too fast. I keep my calm, my composure somehow.
I stay
calm, I listen to the doctor, I listen while I get a total restriction for
driving, SHIT my freedom. I try to
negotiate that I drive with an automatic.
I thank the doctor and I leave numb the cabinet.
I drive
home for now a last time until I maybe get once again a special adapted care,
hopefully to regain my freedom.
I cry, I
scream, I am angry at home oh so angry, WHY the F*** me
31 years
ago a drunk driver hit me from behind at high speed while I drove down from a
hilltop. I ended up dangling with my car
in a tree and the police looked for my head on the back seat! They thought to
find me DEAD!
I should not have survived
that crash. I walked away with minor injuries, everyone was amazed. A tree branch went over my head, the police
thought for sure I was dead decapitated.
I did not
know I had EDS, it probably saved my life because the police found me unconscious
in an unnatural position in the front seat.
31 years
later I am going paralyzed, I am thankful that I have EDS, it saved my life,
the accident must have contributed to the severity of my injuries of my spine, I
have many on several positions neck, thoracic and lumbar. The neck and thoracic are most severe at the
moment.
So I have
decided to be thankful that I have hEDS, it has been curse but a blessing at
the same time!
