Dear Cynn and List(s),

I too have IC in remission thank God; that part of me "occurred" prior to
the
injury that rendered my "pain filled" for life; my IC was so bad that I went
to
the famous Dr. Kristine Whitmore at U of Pa. and had some feedback there;
however, I will tell you this back then "urologists aka butchers" in Virginia
tortured you.

I had Chlorpactin instilled in me before it was FDA approved under general
anesthesia. I awoke in the recovery room in such pain I BEGGED TO DIE
and there was no amount of Morphine, Dilaudid, or anything they could shoot
in my open vien to get me down. Later I found out that "butcher" was a
sadist and NO I COULD NOT SUE him but he caused me damage with his
"bleach rinse" of my already upset bladder.

IC is a little more than this diatribe states; the cells of the bladder
wall
turn on themselves; yes folks another one of our autoimmune disorders and
in this "rejection" the pain is unreal; diagnostic criteria show a bladder
that
cannot hold urine and telltale Hunner cells on biopsy.

Although we lived outside Richmond at the time, Dr. Whitmore knew a
urologist who studied under her in Virginia Beach (nearby area) and that to
me was travel. This urologist wrote me Tylox (basically Percocet with
500 mg. of Tylenol per capsule as opposed to 325 mg. Tylenol with the
Oxycodone per tablet). He would do this because he knew this disease
caused pain; did I know of pain management no indeed one of the two
urologists in the "sadist group" did not believe in any opioids I had to go
to the ER after his early bladder instillations of DMSO (the garlic in the
scent instillation) for shots as needed; he had the staff trained they would
shake their head when they knew I had IC it was SICK, SICKER and
SICKEST and yes I considered suicide from all the side effects, and the
instillations of crap in my bladder made it worse.

Ironically I was a big cantaloupe lover; sometimes two whole ones a
day, caffeine hell yes I had five daughters four less than two years apart,
and tomatoes and Italian food I adored. Some of these nutrients were
making it worse; I would not believe this today but a "nutritionist" worked
with Dr. Whitmore and I was sent the IC diet; trust me I did not go running
when in a few months my bladder finally slowed down some and the
"insanity" of this pain resided in smaller spots; for in IC it affects the
nerve endings so its not just your bladder; your thighs, your vagina,
cramping in your rectum the pain is INHUMAN PAIN. On top of this this
so called urologist (sadist) ignored my history of calcium oxalate stones
and uric acid stones (the latter do not show up always on x rays et al.)
and I started passing "gravel" too the bastard had not a clue and I had
nightmares at times of him torturing me in his office while others watched
and laughed; these treatments were killing me.

I had a premature hysterectomy was a bleeder and it had to be
performed to save my life to be frank; the castration not only caused what
appeared to be this monster "IC" but a mini stroke a few weeks later. To
look at me today you would not say "she's in end stage systemic RSD"
but that's the way God wrote my story.

I know Oxycontin would work for Oxycodone saved me; when the
urologist "down the shore" wrote it for me. I remember receiving an entire
60 capsules (2 a day oh god praise be) and thinking I was finally getting
help. But the sadist had sent me to a psychiatrist for an evaluation I will
NEVER forget this to talk of further torture; IC causes frequent urination
and I had to "pee" he had me waiting and also in the middle of the
session and he considered this denial. I would like to have taken his
"holy dick" and put a few Hunner's cells right up his bladder via a
catheter for 10 minutes, just 10 to let him see the magnitude of his error.

How far we have come; the other urologist was the mini angel everytime
I was hospitalized he would come write me pain medication; he'd say to me
"Mrs. Sikorsky I can only do this once for Dr. So and So does not believe in
this" and he'd write 100 Percocet and that would have to last me forever, I
remember once on Mother's Day developing a bladder infection on top of this
painful disorder and being given 30 whole Percocet because "you're a Mom"
and yes if no one here is gagging, retching, and crying after hearing this
please do. Please take a moment and think how degrading it is to have the
pain in your bladder, to undergo instillations that make you sweat come out
in "garlic fumes" for days, to have bleach up your already damaged bladder,
to be told "you are not in that kind of pain narcotics will only make you an
addict." And no I could NOT sue this MF. Yes later I tried; after Dr.
Whitmore heard the tale I know she would have testified on my behalf but
this "wad of crap" is still hurting those with IC; causing them pain, and
never ever treating their pain even when he caused it...

Sure Oxycontin will help an IC sufferer; as a RSDer of magnitude I have
seen this drug work miracles for those who have RSD when morphine and
Duragesic never touched the core of it. This drug is a miracle and like any
medication devised as long acting if you discontinue it suddenly you will
suffer withdrawals but that is due to tolerance not addiction.

As for the DEA and the rest of the world who feels Oxycontin is the
devil's
drug they need a true lesson in pain, suicidal ideation, and despair. For
PAIN is the one catalyst that can warn you of acute injury and PUT YOU IN
the grave unless treated. I wonder at times if the DEA did not put out
information on how to abuse Oxycontin so that when 'addicts' who will do
anything to not be "dopesick" needed a new fix Oxy was the target.

We have come too far in the medical field to suffer the atrocities we do
and today is the first day where I see as many others who advocate it is
time for a new approach; Cynn and I were talking about the President (who
I happen to know as a good man) being educated; written by all of us in
pain, his wife (another very powerful force in the U.S. today) and perhaps
these stories will give credibility to medical science and fact. After all
Texas is a "good state" we have the legislation to support those in NIP
receiving opioids to manage pain.

Peace,

Karen G.

In a message dated 5/22/2005 8:50:19 AM Central Daylight Time,
cynnyc@... writes:
OxyContin: a matter of survival

http://www.metrowestdailynews.com/localRegional/view.bg?articleid=9939

Sunday, May 22, 2005 EDITOR'S NOTE: This is a second story previewing
OxyContin abuse and use prior to tomorrow's OxyContin Commission
hearing at Framingham State College.

"Mary" remembers when the pain started.

"I was in grad school," said the Ashland resident, who asked that her
real name not be published. "It was probably '94. I was an intern, I
was sitting...having dinner, and my bladder started to hurt."

After a handful of tests failed to find the cause of the pain, Mary
eventually was referred to a specialist, who found a disease called
interstitial cystitis had infected her bladder.

It would be two years before she finally found relief, and it came in
the form of a drug that has become virtually synonymous with
prescription drug abuse -- OxyContin.

These days, Mary, who works as a social worker at a residential
program for boys, takes upward of 200 milligrams of OxyContin every
day to manage her pain.

Without the drug, she said this week, her life would fall apart, just
as it nearly did before she found relief from the pain.

Interstitial cystitis is an incurable disease that produces tears and
ulcers inside the bladder, leaving sufferers in constant pain as the
acid in urine eats away at the raw flesh.

"It's like taking a paper cut and sticking your finger in ammonia,
that's what I was feeling on the inside," Mary said. "It never
stopped."

With few treatment options available, Mary's doctor referred her to a
pain management clinic, where doctors wanted to use narcotics such as
OxyContin to help her deal with the disease. It was an option she
flatly refused.

"I said no. I will never, ever take narcotics," she recalled. "My
daughter was 2, my son was maybe 8. It wasn't an option."

Her only other option was to resort to regular clorpactin treatments.

Every three weeks or so, Mary would travel to the hospital where
doctors would insert a catheter into her bladder, then pump bleach
into her body in an effort to literally burn the disease out.

"It was awful," she said slowly. "But it wasn't helping. And now I'm
a mess, and I'm thinking about committing suicide. I am really in
trouble. I'm at the bottom of my barrel."

In a desperate search for any relief, Mary tried taking Chinese
herbs, and even visited an acupuncturist, but the pain never
subsided.

In fewer than six months, Mary said, the constant pain became so
debilitating she simply cut off the rest of the world.

"Life was great," she said, of the time before the pain began. "I had
a million friends. I had my beautiful children and my good marriage.
I went from that to being in bed. I could not get out of bed. All I
did was lie in bed and cry and cry and cry. That's it."

After nearly a year of constant pain, Mary finally broke down, called
the pain management clinic, and was put on medication.

Initially, though, things didn't seem to get much better.

Though the drugs reduced her pain, they made her "dopey," she said,
making it nearly impossible to function normally. She even had a car
accident while on the drugs.

Even when she finally found some success with OxyContin, she was
hardly ready to celebrate.

"The truth is I looked back, (and) I had made such a mess of all of
the relationships in my life," she said. "I felt that I was coming
back to life, but...my life was a mess.

"The pain had made a mess of my life, and I'm holding on by less than
a thread."

Today, though, few would ever suspect Mary was anything other than a
happy, healthy suburban mom. With OxyContin to eliminate her constant
pain, she now walks several miles each day, and cares for her two
active children.

But her fear at being found out is very real, as is her fear of the
drug's reputation for abuse.

Besides keeping the drug locked in a safe in her house, she also
keeps a supply of the drug at a friend's house, and carefully guards
the information.

"A few people (know)," she said. "My supervisor, the owner of the
program (where she works) knows. And one very close friend knows.
That's absolutely it.

"If I came out to the average Joe that I take OxyContin, the whole
thing would be different. No one believes you can function like this
with this medication."

Perhaps her only greater fear is that the drug may one day not be
there.

Prompted by an explosion of OxyContin abuse, particularly among teens
and college students, U.S. Rep. Stephen Lynch two weeks ago
introduced a bill that would pull the drug off the shelves until it
can be made safer.

"This product is one of the most addictive substances to be legally
sold in the United States," Lynch wrote in an opinion piece in the
Boston Herald. "It is so inherently addictive that it is unsafe for
the general population to whom it is being marketed and prescribed."

To reduce the chances for abuse, Lynch urged Purdue Pharma, the
drug's manufacturer, to develop methods of preventing addicts from
overriding the drug's time-release feature.

Most addicts crush the pills, then inhale or inject the drug for a
heroin-like high.

Lynch also urged better and more consistent warnings on the dangers
of physical dependency and addiction, and more and better education
of doctors and pharmacists about who should be prescribed the drug.

"Until we see meaningful steps to make OxyContin safer, I have no
other option than to seek it's removal," he wrote.

It's a prospect that terrifies Mary.

"There is no life back in that bed and without OxyContin," she
said. "I do understand the dangers for abusers, but taking that drug
off the market would take away the lives of so many victims of
chronic pain.

"What a shame that it is being judged because of those who choose to
misuse it. What about the people like myself that choose to use it
correctly, so we can have a life?"












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Thank you. The O.C.P.M. Staff


Karen Hallenbeck-Sikorsky-George BS,RN,UM,QC

http://hometown.aol.com/anewplanforyou
http://hometown.aol.com/anewplanforyou/sb.html


Owner-Moderator
http://groups.yahoo.com/group/ADayWithoutPain/
"ADayWithoutPain"
http://groups.yahoo.com/group/AnAnGeLInPain
"AnAnGeLInPain"

Ya'll are special you truly are, and to be the
catalyst for this group is a miracle for I know
in my heart that God's will created this group(s)
and each of you are very very special to me, always
no matter what I AM SO PROUD to a "part of" what
this family has become..AND WILL BE!!!!
Interqual Certified
Published Psychiatric Researcher
Advocate for those in CIP, HIV, Psychologic Pain
"A Higher Power is necessary to find the ability to withstand self
destruction.."


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