Secret Suffering Newsletter – September 20, 2009

WEEKLY TELEPHONE SUPPORT GROUP – WOULD YOU BE INTERESTED?

Would you be interested in a weekly telephone support group for chronic
pain, such as pelvic pain, sexual pain, IBS, IC, back pain,
fibromyalgia, arthritis? I’m thinking of starting such a group. It would
be anonymous within the group (first name only). Each member would have
a unique access code for the meeting so we would ensure only members
attend and no “lurkers.” I’ve been researching software to set this up
with a chat and phone line and it’s very do-able! I’ve had so many women
tell me they’d love such a group, but it’s too much of a hassle to
commit to drive to a location weekly. So, it seems to me a phone group
would be the answer.

Please respond to our poll on the Home page of our site so I can see if
there would be interest. The poll is on the right side underneath the
mailing list signup. Or, just reply to this newsletter and type “yes” or
“no” in the subject line.

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DR. MEHMET OZ SEEKING GUESTS FOR “WANT TO BREAK UP
WITH YOUR DOCTOR” SEGMENT

Dr. Mehmet Oz is looking for guests for an upcoming segment on his show:
“Want to break up with your doctor? Feel he/she doesn’t understand you
or doesn’t answer your questions?” Send your story and CONTACT info to
televisionkaty@gmail.com.

This is a perfect opportunity for you to speak out about your experience
with the medical community if you are like me and have not had
your concertns taken seriously, or were mistreated and
misdiagnosed on your way to a proper diagnosis (if you even have one
yet!).

We urge you to contact the show about your own situation. This is
exactly how most of Dr. Echenberg’s patients come in to see him …
being tossed from doctor to doctor … having had multiple surgeries and
multiple complaints … not being heard.

This is one of the reasons we wrote our book, “Secret Suffering.” From
my perspective as a patient, I’ve been really battered and bruised
emotionally from doctors who didn’t “get it.” In fact, you can hear my
recent rant about the last rheumatologist I just saw a few weeks ago —

http://www.secretsuffering.com/blog/enough/.

I’m going to post a follow-up to that soon (hint – it didn’t get any
better with him, but it is getting better).

If you write to televisionkaty@gmail.com, please mention our book because that is one of
our primary missions — to help women speak out and shatter the silence
that allows some doctors to continue this pattern of discounting our
pain.

Remember – we are not problem patients. We are patients with a problem!

Don’t let anyone tell you that your pain is not real. We need more of
the good and caring doctors, such as those interviewed in the book, who
have become our advocates and have the patience to walk with us on our
path toward managing and healing our chronic conditions.

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CHRONIC INVISIBLE ILLNESS AWARENESS WEEEK

Last week was Chronic Invisible Illness Awareness week as described by
the site of the same name: http://invisibleillnessweek.com/. While this
is a Christian organization and we don’t espouse ANY religious views
here, I’m excited that someone somewhere is telling the truth that just
because you cannot see pain doesn’t mean it isn’t real.

There are some excellent articles from the site, such as “When Your
Spouse Doesn’t Believe You Are Ill.”
(http://invisibleillnessweek.com/?p=131)

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MY OWN HEALTH JOURNEY

I’ve started revving up the engines in my efforts to improve my own health
because I’m really feeling downright pitiful and barely functional. I’m
focusing on my fibromyalgia and IC. In so doing, I began
working with:

* A wonderfully gifted Empowerment Coach named Alicia Tompkins
(http://www.movethroughit.com 561-504-5826), She is working with me
using a technique called EFT (Emotional Freedom Therapy
[www.emofree.com]). While I don’t believe my conditions are imaginary
and “all in my head,” I do believe that for me, my emotions have played
a big part in the physical manifestation of my illness. At the age of
54, I’m ready to get rid of this muck. You can read a lot more about
this technique on the sites I listed above and actually download the
manual for free.

I realized, that though there are claims of instant “cures,” it wasn’t
going to work that way for me and I needed help. Alicia has helped me
understand that for someone like me, with decades of garbage stuck
inside, it will take some time to get unstuck. I’m going to give it a
sincere effort. I love working with Alicia, who does do phone work as
well. She’s a gifted and insightful healer, incredibly passionate, and
extremely funny.

Plus, she has her own amazing story of healing.
She’s going to be a guest on my radio show soon –
www.MidlifeWomanRadio.com (more on that later).

* Five Element Acupuncture – I’ve heard a lot about this technique being
effective for pelvic pain and I found a terrific acupuncturist named
Monique Perkins. She’s pretty much painless, which is always a good
thing. http://5ewc.com/slimmeruwellness/home.html

* Ray Chan – there are no words to describe Ray. He is a deep muscle, trigger
point massage therapist. It feels like he turns me inside out and it
seems I must have no bones the way he works on my body. But there is
such relief mixed with the, uh, ok, unpleasantness of his digging into
those knotted up points. Afterwards, I feel like I’ve worked out at the
gym and have more energy. It’s an hour and a half of nearly pure
torture, but I love it.

* I’m going to start Elmiron again and give it a good six months to a
year. (Dr. Echenberg’s strong suggestion)

* Started back on Lidocaine. (Dr. E again)

* Giving Lyrica a try again. Ugh, I sure don’t need another 20 pounds
on me, but I’m just miserable enough right now to give it a try.

I was hopeless about finding any help where I live, but these
experiences have convinced me otherwise. There are pockets of people
everywhere who can help you. On our site, we’ve started a list of
physical therapists and other alternative therapists to complement the
traditional medical treatment you may be undergoing
(http://www.secretsuffering.com/resources/). But remember, what I am
describing above is just my own personal experience. It may be quite
different from yours.

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VIDEO AVAILABLE FOR SUSAN’S TALK AT THE ICA CONFERENCE

I’ve posted the video of my talk at the Interstitial Cystitis
Association webcast/conference entitled “A to Z on IC” from Sunday,
August 23rd. http://www.secretsuffering.com/blog/speech/

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“MIDLIFE WOMAN RADIO” IS ALMOST HERE

“Midlife Woman Radio” is coming! (www.MidlifeWomanRadio.com) I have a
“Vent Line” for you to call with your pet peeves, questions, comments,
frustrations. It’s a Florida number – 1-561-372-1119 – so long distance
charges will apply. I’ll be playing calls and creating show segments
around the issues that concern you. Plus, I’m going to interview
intriguing guests who are edgy and think “out-of-the-box” to talk about
subjects that are important to all of us as we move through our lives.
Soon, I’ll have the schedule up.

Feel free to email me (susan@secretsuffering.com) or call the vent line
with suggestions for topics. The more controversial, the better!

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“SECRET SUFFERING” BOOK AVAILABLE

The book, “Secret Suffering: How Women’s Sexual and Pelvic Pain Affects
Their Relationships” is available at Amazon (http://tinyurl.com/oqlkjm)
and Barnes & Noble (http://tinyurl.com/nyczk3).

“Secret Suffering” is the first book that tells the story of how pelvic
and sexual pain affects the lives of women and their partners in their
own words, provides information on cutting-edge research and treatments,
and shares methods to facilitate your healing with your doctor. I share
my own experiences as a patient who has gone down the painful,
frustrating road of living with an illness that is often dismissed and
not taken seriously. Robert J. Echenberg, M.D., shares his decades of
experience and expertise as a gynecologist and specialist in the
treatment of chronic pelvic pain.

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POST ON THE “HEALING ROOM” BLOG

Don’t forget to check out our Healing Room blog and post your own
thoughts at http://www.secretsuffering.com/blog/category/healing-room.

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You can now follow me on: Twitter: http://twitter.com/SusanBilheimer
Facebook: http://snipurl.com/fndtc
MySpace: http://snipurl.com/fndw4 and
Squidoo Lenses: http://snipurl.com/fne1q

As always, please feel free to call me at 888-241-1461 or email
(susan@secretsuffering.com) with feedback.

Thanks for your support!

Susan Bilheimer