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Important! Please read the chat directions below, so you're ONLY in the Cushing's Room, not both Cushing's and Power Surge. Many people end up being in both rooms, instead of only one.
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| Birthdays: | Other Celebrations: |
• DougiesGirl, March 8
• JennH, March 10
• Kate2001, March 11 |
• Cookie is getting better every day!
• Francis Rynd, Inventor Of The Hypodermic Syringe, March 12, 1845
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| Upcoming Surgery: | Currently Recovering: |
• Melinda Freels, started Fractionated Stereotactic Radiation, February 18, St. Joseph's Hospital in Atlanta. This will be daily over a 6 week period. She should be finished around April 1.
• Jaime, Pituitary surgery at UVa, March 10
• Rikki, Pituitary surgery at OHSU (Oregon Health Sciences University), March 10
• Arlene, Pituitary Surgery in Israel, March 11
• Jinxie, Pituitary surgery in CA, March 12
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Pituitary
• Duncan (Karen)
• Cat
• Dana
• Dee (deleciab)
• Cherri in AL
• Linda P. (tinydogpries)
• BrendaC
• Darren Shore
• Erin |
Adrenal
• Angela Kaiser
• Melinda 2
• Deborah's son, Curtis, from a second adrenal surgery
• Suzanne
• Debbie
• Kathie Mcconnell (kamaroon)
• Denise |
Other
• Luisa (LSpriggs), gamma knife at UVA
• Sean S, Ectopic, thymus removed
• Jennifer (Jennifurlii), Sleep Apnea
• Dori, gamma knife at UVA
• Cookie is in rehab after a heart attack, internal bleeding, dialysis, biopsies. Please continue to send prayers!
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| News! |
| • eCards for all occasions are now available on the Cushings-Help site.
• The newest board is Post-OP Over 2 years? Still not really well?, suggested by Christine Bartol. She suggested this board for those of us who are surgery oldtimers, whose numbers say we're "cured" but still aren't feeling completely well.
• Sign up for notification of local meetings. You need not be a CUSH member to participate.
• There are now 1274 members on the Message Boards
• We welcome your articles, letters to the editor, bios and Cushing's information. Submit a Story or Article to either the snailmail CUSH Newsletter or to an upcoming email newsletter at http://www.cushings-help.com/newsletter_story.htm A no-obligation free sample of the CUSH Organization Newsletter is also available from that same link.
• A list of Current CUSH Organization members is available here.
| Newest Bios: |
| To add or edit your bio, please click here. |
| Liz Jamieson |
Updated
No diagnosis yet. |
New Zealand |
| Melinda Freels |
Pictures added:
Fractionated Stereotactic Radiation
diagnosed with pit. |
Oak Ridge, TN. |
| Rose Marie |
Pituitary
hypercortisolism |
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| SeanS |
Updated
Ectopic Cushing's Syndrome.
thymus gland removed
January 29, 2003 |
Portland, Oregon |
| Stacy |
No diagnosis yet. |
Northern Michigan |
Dori
Middleman, M.D.
71 Merbrook Lane
Merion, PA 19066
610-664-7793FAX: 610-664-6667
Email:
DrDori@AOL.COM
HOW TO HAVE FUN WITH A
BRAIN TUMOR
A Pituitary Party with a
pituitary-shaped cake, complete with tumor of a different-colored icing, a
pituitary hunt for the kids, a raffle to benefit the Wellness Community (a
cancer support group), and a contest for the most creative object to be inserted
inside my head in place of the removed pituitary tumor were ways in which I
distracted myself from the terror of brain surgery. I hired a story-teller, who
wrote pituitary stories. I bought the game, “Cranium”, to give as prizes for the
winner of the replacement-object contest, and my caterer created pituitary-theme
foods: pituitary pasta, cerebral cucumbers, and had a cauliflower simulating a
brain decorating the table along with a scarecrow who displayed the sign, “If I
only had a brain…”
My pituitary party invitation
read:
As you may or may
not know, I have been diagnosed with a pituitary adenoma, a small brain tumor,
and am having surgery on April 3rd. I have decided that one thing you
can do for me is help me have fun with my brain tumor. Traditionally, brain
tumors have been viewed as undesirable, somewhat dreaded, and even potentially
life-threatening. They’ve gotten a bum rap, in my opinion. I think they give
life a purpose (survival with a few brains intact) and give their bearers
something to talk about, but better yet, laugh about.
Dan Gottlieb, a Philadelphia
Inquirer columnist, in his April Fool’s column on the importance of not
taking oneself too seriously, gave me and my party a notable mention, resulting
in all of Philadelphia knowing about my surgery and many expressions of support
and concern.
Indeed, contemplating death and
disease is not the way I most enjoy spending my time, although I did a fair
amount of that too. But throughout my illness and recovery, I have attempted to
make the most of the cards I have been dealt.Other health-promoting strategies I have
used included:
 regular mass
e-mailings to my close friends to keep them apprised of how I was doing so they
could best offer support;
contacting
everyone I could think of for recommendations and information on doctors
finding and
conversing with fellow patients on-line in the chatroom for people with my
illness, Cushing’s Disease
using hypnosis,
yoga, exercise, acupuncture, massage, Gestalt, and energy-work as adjuncts to my
medical treatment
re-entering and
using psychotherapy to support me emotionally through the process of illness and
the stresses of medical treatment (In Gestalt therapy, I spoke to my tumor and
my pituitary and came to understand their function in my life: I had a hypomanic
pituitary mimicking my own sometimes hyper-functioning mode of living.)
joking with
people as much as possible about brain tumors to facilitate comfort of myself
and people providing my care from hospital registration personnel to my brain
surgeon
carrying with me
at all times the small objects people offered to me as brain-tissue replacement
wearing a
donut-like pendant covered by a symbol of a healer as a reminder of my brain
with a hole in the middle healing
Unfortunately, my
surgery was unsuccessful, and I faced a decision between a second surgery or
radiation treatment. I did not find this funny. In fact, I was pretty
demoralized and said so in an email to friends and colleagues, again inviting
humor. One of my colleagues placed a request to the entire international mailing
list of my Gestalt therapy colleagues on my behalf, saying she had “an ill
friend in need of humor”. In came jokes from around the world – about fifty
pages of them – which I read to my driver enroute to my gamma knife radiation
treatment in another state. We laughed our way there and back!
Life is what it is. We get what we get. And
we might as well enjoy it!
The author, Dori Middleman, M.D. is a
child and adult psychiatrist in private practice in Merion, PA. She has a
musician/conductor husband and two children, Jeremy, 6, and Aria, 4. She was
diagnosed with a pituitary tumor causing Cushing’s Disease in November of 2001.
• If you've been diagnosed with Cushing's, please participate in the Cushing's Register The information you provide will be used to create a register and will be shared with the medical world. It would not be used for other purposes without your expressed permission. Note: This information will not be sold or shared with other companies.Lynne Clemens, Secretary of CUSH Org is be the person responsible for the creation of this register. If you have any questions you may contact her at lynnemc@attbi.com. You do not have to be a member of CUSH to fill out this questionnaire, as long as you are a Cushing’s patient. We do not believe that the world has an accurate accounting of Cushing’s patients. The only way to authenticate accuracy is with actual numbers. Your help will be appreciated. Thank you."
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| Fundraising: |
- Decorative Candles:
- Julia (Spencer's Mom) is beginning to make food oriented candles - shaped like sundaes, pies, and other desserts. She will donate 20% of the proceeds to CUSH and she's even trying to making a candle in the shape of the CUSH pin!
Watch for more infomation about this new CUSH Fundraiser.
- Cape Cod Candles:
  Lynn in Va Cushieinvirginia@msn.com) has an idea for a CUSH fundraiser. Her friend Sherri has been a Party-Lite Candle consultant for many years. The candles have several different scents/colors to choose from: Cinnamon Stick (Brown), Raspberry/Thyme (raspberry), Mulberry (Mulberry), Ocean Mist (Royal Blue), Bayberry (Sage), Lime/Cilantro (light sage), Honeydew (Mint), Pear / Basil (Yellow), Vanilla (Ivory). There is an optional lid and a platter to go underneath.
These would make terrific Secret Someone gifts and you'd be helping CUSH out at the same time!
The candles are all pure Cape Cod candles. The total cost is 15.00 per candle including shipping/handling. Sherri has offered us her commission, $3.00 for each candle that is sold, to go to our CUSH Organization.
For an order form, please email Cushieinvirginia@msn.com or download here in Excel format.
Please send checks with orders to:
Sherri Blakeman
7808 Knollwood Street
Brandywine, MD 20613
You may also email orders to Sherriblakeman@comcast.net and mail the checks to her.
Many thanks to Lynn and Sherri!
- Burden Bears:
- Natalie has been collecting some money for CUSH.
She says: "I am making "Burden Bears" and selling them at my craft shows and I am donating $1 from each sale... ...So far I have collected about $20 for us."
Thanks to all of you for these clever Fundraising ideas.
CUSH can always use funds to help us all, by spreading the word and helping others. What can *you* do to help CUSH?
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| Upcoming Local Meetings: |
• Shauna has been busy setting this up...CUSH is proud to announce that we are planning a meeting for October of 2003 in beautiful Portland, Oregon.
We have arranged to have Dr. David Cook of Oregon Health Sciences University speak to our group. Dr. Cook is an Cushing's expert and we are honored to have him speak.
We've added another speaker (thanks Cookie!), a neurosurgeon who works with Dr. Cook's patients. His name is Dr. Johnny Deleshaw, and he's the one who performed Kelly and Emilie's surgeries.
We are also arranging to have additional speakers, including (hopefully) a neuropsychologist and a gynecologist, to help us with all that goes with Cushing's Syndrome.
We are tentatively looking at booking our rooms at the Embassy Suites, Portland Airport location. The cost for a single room suite is $109, about $130 after taxes. Your room will include a breakfast. The rooms are very nice and spacious. We will have both smoking and non-smoking available.
The dates will be: October 16, 17 and 18th, with departure on the 19th. Our schedule will be as follows:
Thursday: General meeting of CUSH, one hour CUSH officers meeting, evening cocktail hour.
Friday: Conference with our speakers and a catered lunch, courtesy of CUSH. Dinner out that night (we'll provide selections).
Saturday: FUN!! We're looking at either a boat ride down the Columbia Gorge or possibly at train ride down the Gorge.
Sunday: Hugs, tears and goodbyes
There will be a small charge (donation, tax deductible) to attend the conference, but we are sure it will be worth every cent. Many of us are putting in lots of work to make this an unforgettable, yearly event. We will invite you to tell your doctors about this - YOU NEED NOT BE A MEMBER OF CUSH TO ATTEND. We will have materials available for you to post and give your doctor to promote this event. It will be very professional and we will have some fun events planned.
Here's what we need from you before we sign a contract:
If you would like to attend please let us know if you'd be willing and able to book a room. Remember, you can always share a room. We will be committed to 20 rooms per night, and need to fill all rooms.
If you're in the local Portland area and want to attend, but not take a room, please let us know.
We are setting a date after which attendance will be restricted. Tentatively, we are looking at until June for Conference attendance and July as the last time to book a room. All of this is subject to change, as we're still ironing out details.
Please let us know ASAP if you believe you can attend and if you'll need a room. Also, if you can indicate if you believe this is 100% firm, that would be great. We will be signing a binding contract that could cost CUSH more money than we have if people don't show up. We're trying to avoid that by getting your thoughts and attendance.
Thanks to everyone - this is going to be one great conference!
• Friday and Saturday, April 1-3, 2004. Pituitary Days Convention for Doctors and Patients at UVa, Charlottesville, VA. More information here. There will be many people from the message boards there. CUSH will have a meeting during this time, as well.
• Tentative Atlanta area meeting. Carol Perkins, former model - Victoria's Secret, Harper's Bazaar, Vogue, and the founder of Harry Barker in Savannah - has agreed to share her inspiring story. More information, as it becomes available, or check here
• More upcoming local meetings are listed here.
• To list other local meetings, please send an email.
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| New Book: |
The Cortisol Connection: Why Stress Makes You Fat and Ruins Your
Health - And What You Can Do About It
by
Shawn M. Talbott,
William Kraemer
 Book
Description
The hormone
cortisol, activated by the fight-or-flight (stress) response, is
emerging as a major culprit in a variety of health problems. The
Cortisol Connection explores the documented relationship between
elevated levels of this hormone, chronic stress, and such health
conditions as obesity, depression, suppressed immune system,
osteoporosis, and hypertension. The book shows how to control cortisol
through supplements, dozens of which are discussed in detail in a
chapter on the SENSE program (Stress Management, Exercise, Nutrition,
Supplementation, Evaluation), with short, practical recommendations in
each category. Also included are warnings on the use of ephedra- and
caffeine-based weight-loss supplements, which actually cause weight
gain, along with resources and references.
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| Online Chats: |
| Please join us in the Chat Room (click here, and then continue on to TheCushingsChat. See directions below.) The next scheduled chat is TONIGHT at 9 PM, Eastern, when we will discuss Cushing's, troubles with diagnosis, symptoms and much more. Important! The chat room has been updated and will look different to folks who have been around before - there are some new features, and some of the old ones have moved to a new place, so it might take a little getting used to. People who do not have Java on their browsers may use another version of the chatroom. Please be sure to continue on to TheCushingsChat. While you're in the Power Surge room, click on the black "X" at the top of the room (Not the X in the blue circle) This will put you in the area where you can see all the rooms listed. You'll see the one to the list that says TheCushingsChat. Double click on that name to get into the room. If you do have menopause issues, be sure to return on Thursday nights at 9 eastern for wonderful information, guest speakers and camaraderie. Not sure how these times relate to where you are? Here's a Time Zone Converter Directions: When you enter the Chat Room (http://sites.chatspace.com:8350/):
1 Enter a nickname for yourself (it would help everyone if you use the same name you use to post...but it's not necessary). NO Password is required. Your password from the boards will not work, unless you register it after you are in the chatroom. More features are available when you are registered, but it is entirely optional. If your chosen name doesn't work, it means that someone else has registered it. Pick another name and try again. You may also choose a font size at the sign-in window, under "Options". 2 Push the "LOGIN button"
You will be in my friend's Power Surge Chat Room. 3 On the top, left side, you will see a tab that says "Rooms". Click on that and there will be a list which includes the TheCushingsChat. Click on the name to get in. I hope to see you tonight! 
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Cushing's Help and Support at http://www.cushings-help.com
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