I am HCP.
That is to say, that I have coproporphyria.
For many years I had the symptoms and the medical profession put
me through the mill.
I had severe symptoms for nearly a decade and never once did
someone say lets admit her and see what is going on. The medical community
just kept testing every disease known to man. Every month it was more and
more accummulating on medical bills.
In addition to the numerous tests, and the accummulation of
unpaid medical bills the doctors kept loading me up on unsafe meds. I must
of lived from pure bullheadedness.
Three times I nearly died. Twice I had hallucinations so bad
it took days before I could regain mental stability and have the
tremors and seizure activity subside.
I have had so many shocks from EMGs that I am afraid to plug in an
Over the years I have had tubes put in every opening of my body. Up
to the time of my confirmed diagnosis i had had five
spinal taps, three mylograms, twelve gallons of blood drawn.
On addition I had an appendectomy, my gall bladder removed,
and a laproscopy. Moreover there were six CT scans, endless
exrays, two MRIs, three endoscopries and two colonscopies
and two barium enemas.
Looking back through my medical history there were 14 times
cited that it was suggested I have psychological evaluation. During the
time before my diagnosis very visit to the various doctors I was
considered psychological or as one said "just in my head".
My self esteem went to zero. I was just about convinced that i was
indeed making myself sick. My husband was in graduate school
and I was trying to keep our home and family going. I had to give
up my job outside the home because I was too sick to even get
dressed some days.
Sometimes I go get bitter just thinking back on the
long pilgrimage to this point. However I know that I must remain
strong, and be positive. My point of sharing you my story of porphyria is
that no matter what happens in your own porphyria history, you are the only
one that is going to understand what is happening to you.
My husband tried his hardest to understand porphyria and
finally he believed what the doctors would say, and felt that it was all
psychological and that I was loosing it. He finally left. The children
were confused by my one day being fine and the next day having
seizures and having mental changes.
My parents were in complete denial after seeing me go through a
series of seizures and mental confusion. They placed
me in a psych ward for observation. THe first day I was vomiting a lot and
so they administered glucose and I improved within hours and
spent the rest of the confirmation enjoying reading library books,
talking with the nurses and offering to help with chores in the ward
kitchen for something to do. After a week the psychiatrist assigned to me
asked me about all of the symptoms, after he had finished my
"mile high thick" chart. Then he asked me if I would do the "pee"
tests and I did. The urine porphyrin was elevated slightly. He
contented specialists who told him that it could have been from drugs or
other causes for the elevation. However the psychiatrist knew
that I was not mentally ill.
I was sent home with instructions from him along with
urine and stool containers for the next onslaught of porphyria.
I knew the name now and he gave me photocopies of everything he
had read on it. He said he wanted to prove that I was indeed
physically sick and not mentally. He was 100% behind me and
helped me with my self-esteem. Today he is a close friend to
whom I call whenever someone doubts my illness.
When the next attack rolled around I did the pee test and
the stool test. I called him at the crack of dawn after the 24 hours
were up. He personally saw the routing of the collection to the
lab and transfer to the assaying lab at the Mayo Clinic.
The next week I was awaken just before the clinic opened
and it was this wonderful shrink. "Good news". "You are
HCP !" We know for sure and you have validation." "Hold your
head up high!"
And so I did. I had to return to some of the original doctors
who had claimed me psychological. One apologized and the
other stood in disbelief when I handed him the test results.
I was eventually lucky. However I have gone from acute
to chronic and wonder if it would have been this way had I had
early recognition of my diagnosis.
So I was "put through the wringer" but not fly
high and free with my validation and the knowledge of
what I have and how to protect myself from further attacks.