| |
Read a story
Tonya Carpenter-Love
Medical Chaos
In 1984 I was hit by a car, and after more than 22 surgeries,
nothing has ever been the same. In 1986, I started having problems
with ringing in my ears, extreme hearing fluctuation and visual
distortions. The symptoms led to a diagnosis of Meniere’s
disease in my right ear in 1986. In 1990 I was diagnosed with Autoimmune
Disease, which supposedly had caused the loss of hearing in my
left ear. At that time my doctor tried, without success, to treat
me with chemotherapy. There was a break in the treatment long enough
for me to give birth to my son. I stayed miserably sick during
the four long years between chemo and pregnancy. I was finally
taken off the chemo treatment after it had eaten my bladder lining.
My appendix was removed unnecessarily while visiting an ER for
extreme stomach pain. Actually, I have been to more ER’s
with abdominal pain than I can count, but other than the time my
appendix was removed, there was never any clue as to what might
be causing the pain. Over the years I’ve heard such explanations
as “It’s just a bad case of gas” to “There
is nothing wrong with you!” There were times when I would
pray and beg for death, times when I would be so mentally impaired
that life had no other meaning cruel harsh hopelessness, times
when I could not get out of bed, and times of loneliness when no
one could understand what I was going through.
I was finally diagnosed with porphyria two years ago, after being
trapped for six hours in a public restroom with severe abdominal
pain. I cried out for help to my latest primary care physician,
and something clicked for her like it had for no other doctor
in my life. After completing two 24-hour urine tests and not
knowing what my physician was looking for, I was called into
the office and given the diagnosis of Acute Intermittent Porphyria.
My name is Tonya; I was born in Tennessee and raised in Alabama.
I am 42 years old and have no known family medical history, as
I was adopted at age four. Before I was diagnosed with AIP, I
had never heard the word porphyria. However, I have always known
that I was “different.” Even before my porphyria
diagnosis, I had many other medical diagnoses on which to blame
my strange and many symptoms.
Although the symptoms never really matched the diagnosis, I had
the answers, or so I thought. In these two short years, I’ve
not only learned how to pronounce the word, but I have also learned
much about what makes my attacks become active. I still continue
to have days and nights where my world is upside down, my pain
is unbearable, I can’t complete a simple task and loneliness
is my constant companion. However, I have gone through the phase
of “What is Porphyria?” and the phase of “What
does it mean for me?” I am now entering the phase of, “What
can I do to help others?” If you would like to contact me
in regards to porphyria you may do so by writing to: TCL4U2@aol.com.
Tonya
Carpenter-Love
|
