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Story: Not New But Well Told
Since I think your site is such a "hoot" I couldn't help
but share my story with and others.
I’m new to
this site and just wanted to share my tiresome battle with P.
I have had P for 7 years now. I
was diagnosed at 21, but it began 2 years prior.
It took 2 years to get a diagnosis.
information, articles that I’ve read, I’m told that one is predisposed
to P and that certain traumas, stressors, or illnesses can “bring out”
the plaques. I, for one,
believe that. You see, my
middle name should be Grace. I’m
athletic and active but a clutz. My
freshman year of college I managed to fall on a treadmill and turn the
skin on my shins into hamburger. Now
it seems something out of a comedy, I’ll admit, but it didn’t while I
was in pain and healing.
About a month
after that I began to get what I thought were hives near the mutilated
areas my legs.
After many sleepless nights I went to Healthcare Services on campus
where I was told I had dry skin. “It’s
common among college students in the winter.”
Believing that, I religiously applied lotion to my “dry skin”
— but to no avail.
So I went back
to Healthcare Services and recited my earlier story of the itchy sores on
my legs. Only this time I got
a much more creative response. This
time I had scabies. I was
given some lotion that would kill these little mites in my skin and all
would be well. I knew this was
not the case, but being the peaceful person I am, I brought the lotion
back to my dorm room and tried it. Imagine
my surprise when it didn’t work.
By this time I
was getting ready to go home for summer break.
I figured maybe it would work in my favor to see my primary care
physician (PCP) and start “fresh.”
Just when I thought I could not get any more ridiculous diagnoses,
my PCP stated matter-of-factly that I had a fungus.
She “discovered” this from turning the lights off in the room
and shining a black light on my skin.
“Yup, can’t you see how your skin is a salmon color?” she
asked, eye level with my knees. “No.”
I answered honestly. “I can
only see the lint from my pants.” But
then again, who was I? I was,
after all, only a freshman in college.
So I was fast
approaching my 1-year anniversary date with this mysterious skin
condition. I am a gentle,
timid person by nature, but after 9 months of very little sleep at night,
I was becoming grouchy and testy. By
this time I had plaques on my lower legs, knees, elbows, and forearms.
I had had enough. I
went back to my PCP and demanded to see a dermatologist.
For once I was heard and got my way.
It would take 3 weeks because he wasn’t in-house, but I could
almost see the light at the end of the tunnel.
During my visit
with the dermatologist, he did a biopsy and asked about my past medical
history. He concluded that I
had eczema. He told me to use
only hypo-allergenic products for my laundry detergent, soap, and lotions.
Here was a specialist: He
had to know what the hell he was talking about right?
No, not quite.
By this time I
was almost through my sophomore year of college.
I was convinced I had leprosy and my limbs would start falling off
anytime now. None of the
“bland” products worked in reducing my “rash.”
The “rash” had gone from my forearms to my armpits.
Only fellow P sufferers can appreciate how tormenting the
“itchiness” from P is, but then to have it in your armpits, where the
body heat is greatest, in the summer?
I was thinking about checking myself into the state psychiatric
hospital at this point.
As a last
resort I asked my PCP to get me an appointment at Dartmouth Hitchcock
hospital in Lebanon, NH. It
was a 2-1/2-hour road trip but desperate times call for desperate
measures. First of all
she made me an appointment with an allergist, who laughed at me when I
told him my symptoms. He said
maybe if I had asthma he could help me but this was not his expertise.
Thankfully his receptionist took pity on me and got me in to the
dermatologist took one look at me and said, “You have psoriasis.”
(That will be couple of hundred dollars, thank you very much.)
I am fortunate
in the fact that the triamcinolone and Dovonex made my P livable.
For the past 3 years I have only had the P in my ears and on my
scalp. However, I have now
developed the joint pain. Like
with the psoriasis, I have gotten the runaround with that as well.
Finally after 2-1/2 years I am scheduled to see a rheumatologist
today to determine what kind of arthritis I have.
Having a health “condition” is bad enough.
But when they can’t tell you what exactly it is, it’s almost
So there’s my
story. So far I am delighted
to have found this site. Its
humor is very enlightening and, after all, you can only cry for so long.
Response: Thanks for sharing,
Claire! And, because we do so
appreciate humor here at FlakeHQ, I feel we’re lucky you found us now,
when those terrible undiagnosed days are past, and you can lead us in the
It seems so
incredible to me that there are derms practicing who cannot diagnose P.
I had one; you had one ... FlakeHQ has many stories with similar
themes. I sometimes wonder if
they simply don’t want to make the diagnosis until they are sure it
isn’t something less dramatic or more treatable.
(That certainly wasn’t true in my case, when a young derm
diagnosed my nose lesion as “pre-cancerous.”)
I’m also surprised that I don’t hear about more derms saying,
“I’m not sure what it is. There
are several things it MIGHT be, including....” And certainly P would be
on the list. This kind of
honesty might help us accept that the derm is going to try lesser
treatments for easier conditions before
s/he moves into the more powerful regimens for P.
It would be even worse, I suppose, for someone to undergo a
powerful regimen for P when, in fact, their condition is something else
— like fungus.
correspondent once told me derms were differently motivated than I
don’t want to treat psoriatics, he wrote.
They may know you have
psoriasis, but they’ll tell you something else, prescribe irrelevant
things, get you back for two, three, maybe more expensive office visits
until you get angry and stop coming. Which
is what they had in mind all along.
I’m still not ready to accept this.
It’s also sad
when becoming finally diagnosed as psoriatic sinks in as a lifetime curse
that will be expensive to combat. I
remember when I learned I had P there wasn’t much research going on, all
the therapies had been around for quite awhile, and when we talked about
possible future breakthroughs we were thinking about genetics and gene
therapy. It took the better
part of a decade for the warm
fuzzies about genetics and gene therapy to wear off.
(The more we learned, the more complicated the problem became.)
Then, three years ago, the “biologics” entered the picture as
many of the long trial periods were ending, and somehow rather than “be
cured” we got excited (again) about simply “whipping the symptoms.”
(Gene therapy was looked at like a potential cure — turning off
P’s master switch, so to speak. The
biologic drugs are a new kind of palliative — new stuff intended to
thwart the lesions. Whether
any of the biologic therapies will be a permanent solution for anyone
remains to be seen.)
Anyway, Claire. It’s good to hear a familiar story told freshly — and with a smile. I hope you’ll write often. -Ed