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Add your name; Help us show how difficult Cushing

Apr 09 2011 12:38 PM | MelissaTX in Useful Information

Here is the full list, feel free to copy and paste it. Personalize it. This list is meant for all of us to share.

CUSHIE WARRIORS: MEN, WOMEN & CHILDREN WHO BATTLE CUSHING’S NUMEROUS TIMES IN HOPES OF WINNING THE WAR

Many of you only know one person with Cushing’s. It is difficult to understand or keep up with ‘your person’ as s/he seeks treatment. You have probably never known someone with Cushing’s before, right? You do know, however, that ‘your person’ talks about Cushing’s a lot or is pretty darned passionate about their Cushie friends. We lean on and help others even as we struggle to find our way through complicated testing, surgery (-ies), and hopefully, cures.

You see, for us, we know MANY people with Cushing’s through cushings-help.com website. Cushing’s is a house guest who ruins our lives and won’t leave us alone. We Cushies all find it incredibly frustrating to have hit the many walls. We see it every day: patients insulted, dismissed, and defeated. When it happens to us, we are often rendered speechless. When we see our fellow Cushies meet the same poor medical treatment, we become incensed. Ultimately, we know our bodies best, and we are found to be correct. We know when we have a disease as devastating as Cushing’s.

For Cushing’s Awareness Day, we compiled this list of Cushing’s patients from all over the world who are fighting Cushing’s and seek treatment and a cure through multiple surgical procedures and even radiation. A glossary of terms is located at the bottom of the list.

Every patient wants to be understood, supported, and cared for. We want you to know that we are one of many who suffer from this ‘rare’ albeit rarely diagnosed disease.

Today, the Cushing community stands before you, asking you to recognize us for the struggles we face and for you to be the most supportive and caring friend or family member you can be to ‘your person.’

(NOTE: This is only a sample collected through a short time on the Cushing’s messages boards. There are many, many more patients like us).

  • Melissa, Texas.
    Pituitary surgery #1: June 2009.
    Pituitary surgery # 2: soon in April 2011.
  • Sarah, Oregon.
    Pituitary surgery #1: Nov 2009.
    Pituitary surgery #2: March 2010.
    Pituitary Surgery #3: Sept 2010.
    BLA: April 2011.
  • Alex B, California
    Pituitary surgery March 2008
    BLA July 2009.
  • Krystine T, Washington
    1st failed Pituitary surgery March 1996
    2nd failed Pituitary surgery Dec 2002
    BLA Dec 2004
    3rd failed Pituitary surgery Sept 2009
    MEGA ONE DAY Radiation ZAP Aug 2010
  • Jill, Denver, Colorado
    left adrenalectomy Nov 2006
    right adrenalectomy Feb 2008
  • Karen, Hinesburg,Vermont
    1st Pituitary surgery in Portland OR, January 9,2006. Not successful.
    2nd Pituitary surgery in Seattle Washington July 9, 2007.
    CSF leak July 13, 2007. I'm in remission.
  • Christy, Oklahoma.
    Pituitary surgery 9-2004 Oklahoma City
    BLA 11-2004 Oklahoma City
    Rest Tissue PIT 9-2006 Pittsburgh
    CSF leak repair with titanium after the last pituitary surgery and it was removed 5-2009.
  • Beth, Winnipeg, Manitoba, Canada.
    Gamma knife December 2006 and again December 2008. Still broken, and if the tumor grows more (it's been stable for a bit now), I'll likely be headed for a 3rd time!
  • Justin K., Kansas
    Pituitary surgery, May 19, 2008.
    BLA, May 6, 2009.
  • Jessica K., Kansas.
    Pituitary surgery, May 16, 2008.
    BLA, May 6, 2009.
  • Bill K., Kansas.
    Pituitary surgery, August 14, 2009.
    BLA, June 2, 2010.
  • Danielle, Massachusetts.
    Pituitary Surgery #1 Dec 16, 2009.
    Pituitary Surgery #2 February 11, 2010.
    BLA Sep 2, 2010
  • Trisha T, Tampa FL
    Pituitary surgery 4/07
    Currently trying to avoid BLA with various meds.
  • Cindy W, Kentucky.
    Pituitary Surgery 11-5-07
    BLA 03-07-08
    CSF Leak repair 10-28-08
  • Lisa, Illinois.
    Pituitary Surgery 5-30-08
    BLA 11-4-09
    Still not cured.
  • Susan G.
    Pituitary Surgery 7/07
    Cleared for 2nd pituitary surgery 10/10.
  • Kimberly, Illinois.
    Pituitary Surgery 11-2-2009
    BLA 2-2-2011.
  • Debra, Virginia
    Debra v. Gallbladder due to Cushings, 1/2005
    root canal due to broken tooth 8/2008
    Pituitary surgery 10/2008
    BLA 6/2010
    Sinus/leak repair 1/2011
    Surgeries offered and rejected == repair of foot muscles, lap band surgery; surgery for excess stomach acid
  • Lisa O, Washington State
    3/25/2009-pituitary surgery
    5/13/2010-BLA
  • April, KY.
    Unsuccessful pituitary surgery 1/15/10.
    Testing again.
  • Elizabeth J, KY
    Pituitary Surgery 7-2-2009
    BLA Sept. 15, 2010
  • Trisha S, Indiana
    Pituitary surgery 11/13/2008.
    Not cured - retesting.
  • Lynne R, Oxford, England.
    Pituitary surgery April 2008
    CSF leak repairs: April 2008, May 2008, May 2008 (3 leaks in the space of 5 weeks), with meningitis as a result of the leaks.
    Issues due to pituitary gland removal: crohns disease, pernicious anaemia, life dependent on multiple medications [hydrocortisone, ddavp, thyroxine, hrt, growth hormone, colestyramine, Vit B12 injections etc, etc. ( oh, and it stole my life- and I'd quite like it back please)]
  • Dara M, Limerick, Ireland.
    Pituitary surgery 29th June 2009
    got MRSA in sinus as a result, had surgery to remove scar tissue.
    MRSA is not for Christmas, for me it's for life xxx
  • Philip B, New Jersey.
    Pituitary surgery at MD Anderson October 31, 2007.
    Testing for Recurrence since Jan. 2011.
    Replacing Growth hormone and Testosterone
  • Donna, Winnipeg, Manitoba, Canada
    Pituitary surgery Aug2009.
    new tumor march 2010 but not told about it until sept2010 when it got to 9mm.
    had gamma knife nov. 2010.
    still waiting to be better. tumor has not shrunk yet
  • Michelle, California.
    Pituitary surgery February 2009.
    BLA February 2010.
    Not cured. Testing. 2 tumors showed on MRI.
  • Shauna N, Washougal, WA.
    Pituitary surgery 8/2/01
    BLA 2/5/02.
  • Robin S, Salem, VA
    Pituitary surgery Dec. 14, 2006
    BLA June 16, 2010
  • Lori, Great Neck, NY
    Diagnosed 12/1994.
    Pituitary surgery 3/1995
    Pituitary surgery 5/1997
    Pituitary surgery 7/1999
    Still sick. Possible Cyclical?
  • Nan, New Jersey
    Pituitary Surgery, October 2010
  • Dan, Delaware.
    Pituitary Surgery #1 August 2009.
    Pituitary Surgery #2 February 2011.
  • Cyndie M, New Jersey
    Pituitary 1-09-2009
    Upcoming BLA 4-28-2011.
  • Kim S., Pennsylvania
    Surgery #1 Jan 2010 positive for Acromegaly but was trying to find a cure for Cushings.
    Testing since Oct 2010 for Cushings.
  • Kay, New Jersey
    1st & 2nd Pituitary surgery June 2008 - in remission
  • Jenny, Iowa.
    Pituitary Surgery #1- May 2008.
    Pituitary Surgery #2- April 2009.
    Currently considering a BLA vs. pituitary surgery #3.
  • Tanya, Buffalo, NY
    Pituitary surgery #1 - February 2010
    currently seeking re-diagnosis
  • Denise P, Dallas,Oregon
    2003 Pituitary surgery Vanderbilt
    2004 canceled pituitary removal after screws were in (I was in pre-op) Vandy
    2004 Stereotactic Radiosurgery- Vanderbilt
    2005 Right half of Pit removed - OHSU
    2005 BLA - OHSU
  • Cate, Georgia
    Pituitary surgery #1 and 2 -- August 2009.
    In remission.
  • Kate, New Jersey
    Pituitary surgery #1 - Jan. 2007 (Failed)
    Pituitary surgery #2 - July 2007 (Total Pit Removal; Failed)
    CSF Leak Surgeries - Oct. 2007 (Failed; still have small leak)
    Open BLA with 18" incision - Sept. 11, 2008
    Gamma Knife Radiosurgery - Oct. 2009
    No pit, no adrenals, radiation damage to hypothalamus (cannot regulate body temp.)
  • Pat, California
    Pituitary Surgery #1: August 2000.
    Pituitary Surgery #2 December 2007.
    Currently testing for surgery #3.
  • Christy, New Mexico
    Pituitary surgery November 2010.
    Considering BLA
  • Brenda, Alberta, Canada
    Pituitary surgery May, 2007
    BLA May, 2007
  • Jamie, Washington State
    Pituitary surgery #1: March 2010.
    Pituitary surgery #2: April 2010.
  • Melissa, Florida
    Pituitary surgery #1: March 2009.
    Pituitary surgery #2: December 2009.
    BLA to come?
  • Vicki, Buffalo, NY
    Pituitary surgery #1: October 2009.
    Pituitary surgery # 2: April 2010.
    BLA soon to come.
  • Gina, Georgia
    Pituitary surgery #1: March 2009.
    Bilateral Adrenalectomy: October 2009.
  • Sherry C, Silverton OR
    1st pituitary surgery 3/2006
    2nd pit surgery 9/2006
    BLA 10/2006.
    Sick since 1999 but diagnosed in 2005.
    Tested for 1 year. Knew I had Cushing's since 2004.
    Still sick....but it's the aftermath of the damage the cortisol did to me and the steroids now.
  • Melyssa, Colorado
    Pituitary Surgery # 1: August 2009.
    Currently testing again.
  • Michaela, Toronto, Ontario, Canada.
    Pituitary surgery 1 -- June 2005
    Pituitary surgery 2 -- Jan 2008
    Pituitary surgery 3 -- July 2008
    BLA -- July 2009
  • Gisella, California
    Pituitary surgery #1: October 2009.
    Pituitary surgery #2: August 2010.
    Pituitary surgery # 3 or BLA to come.

From Cushings-Help.com Glossary:


Pituitary Adenomas
Several therapies are available to treat the ACTH-secreting pituitary adenomas of Cushing's disease. The most widely used treatment is surgical removal of the <a href="http://www.cushings-...tm#tumor">tumor, known as transsphenoidal adenomectomy. Using a special microscope and very fine instruments, the surgeon approaches the pituitary gland through a nostril or an opening made below the upper lip. Because this is an extremely delicate procedure, patients are often referred to centers specializing in this type of surgery. The success, or cure, rate of this procedure is over 80 percent when performed by a surgeon with extensive experience. If surgery fails, or only produces a temporary cure, surgery can be repeated, often with good results. After curative pituitary surgery, the production of ACTH drops two levels below normal. This is a natural, but temporary, drop in ACTH production, and patients are given a synthetic form of cortisol (such as hydrocortisone or prednisone). Most patients can stop this replacement therapy in less than a year.

For patients in whom transsphenoidal surgery has failed or who are not suitable candidates for surgery, radiotherapy is another possible treatment. Radiation to the pituitary gland is given over a 6-week period, with improvement occurring in 40 to 50 percent of adults and up to 80 percent of children. It may take several months or years before patients feel better from radiation treatment alone. However, the combination of radiation and the drug mitotane (Lysodren®) can help speed recovery. Mitotane suppresses cortisol production and lowers plasma and urine hormone levels. Treatment with mitotane alone can be successful in 30 to 40 percent of patients. Other drugs used alone or in combination to control the production of excess cortisol are aminoglutethimide, metyrapone, trilostane and ketoconazole. Each has its own side effects that doctors consider when prescribing therapy for individual patients.

CSF, Cerebrospinal fluid leak: A more rare, although sometimes expected, result of surgery is drainage from the nose of a clear, watery liquid called cerebrospinal fluid (CSF), which is a normal fluid that surrounds the brain. Large pituitary tumors lean up against a membrane that separates this fluid space from the nose, and a CSF leak may occur if this membrane is absent or opened during surgery. The surgeon will generally recognize a CSF leak when it occurs and will "repair" the leak by placing a small amount of abdominal fat over the leak. The patient may awake from surgery and find that it was necessary for the surgeon to place a small tube in the lower back to allow CSF to drain into a bag and help the leak to seal. The tube is placed while the patient is still under anesthesia, and it is not painful while in place. The tube (about 3 millimeters in diameter) will remain in the lower back for 3-5 days and the patient will be kept in the hospital during this period. After the tube is removed (a painless, approximately 15-second procedure), the patient usually will be able to leave the hospital later the same day with the leak sealed. In most cases, CSF leakage does not occur and the patient may expect to go home 2 to 4 days after surgery.

BLA, Bilateral Adrenalectomy: Surgical removal of both the adrenal glands.

Gamma Knife: This is a more focused radiation treatment than conventional radiation, which reduces the risk of hypopituitarism. It provides a large dose of radiation to a tumor so that when the tumor cells divide, they die. As this method depends on the rate of cell division, symptoms may persist long after the radiation treatment.

Radiotherapy, preferably with stereotactic radiation, is effective in controlling tumor growth in the majority of patients who have residual tumor after surgery.

Read story →    1 comments    -----

New MemberMap

Apr 10 2012 02:12 PM | MaryO in Useful Information

For all Cushies, diagnosed or not, friends and family - add your name and whatever info you want to share to this map. The directions are similar to those for AI, below.

Cushing's MemberMap

Posted Image


If you have Adrenal Insufficiency, a friend of mine from Adrenal Insufficiency United has a similar map. Please add your info to her map, as well.

Adrenal Insufficiency Map

Directions for the AI map:

LET’S FIND EACH OTHER! (please read the instructions)


Use ONE MARKER PER PERSON WITH AI (to ensure an accurate representation do not add yourself as a parent or family member) However, If you have lost a loved one to AI, feel free to add them just indicate it in the description box.

After navigating to the map

CLICK “ADD” on top right of map

ENTRY NAME: Initials, first name, City...any of these are fine..or just leave it blank and it will say anonymous

LOCATION: if you don’t want your address known just “click on a map location”
I put my daughter in a park near our home :o) zoom in or out to find your location.


DESCRIPTION: Age of affected, or any other description you’d like

PHOTO: not required

MARKER Addison’s is the default so make sure you look at the whole list. If you have more than one condition which causes your or your childs’ AI, just pick the one you feel is the most relevant and then feel free to add the others in the Description box.

Please do not use ADRENAL INSUFFICIENCY UNITED’S marker. Right now it’s for our main office, but we’ll add more locations/contacts in the future.

CLICK SUBMIT

After you submit, write down the url link for future edits. Then click your marker, and then again click the BLUE initials, city, or anonymous...this will open up a more detailed window to add DOB and Diagnosis info plus anything else you like. Just remember if you put any personal email it will be able to be viewed by anyone.

If you mess up don’t fret, just contact me, as the admin of the map I can fix your entry.

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It's Literally Impossible to Have Cushings

Jan 24 2011 08:01 AM | Tofu in Media

Maxhirez had made a funny movie showing a doctor/patient interaction. So I stole his...er...was inspired by his idea and made my own movie. These are the fruits of my insomnia tonight. Hope you enjoy!

http://www.xtranorma...m/watch/8287099

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Adrenal Videos

Jan 20 2012 06:48 PM | MaryO in Media

Note: The Cushings Help Community is not responsible for any of the content in these videos. We cannot guarantee accuracy of any of this information.

Adrenal Glands

http://www.youtube.com/watch?v=1FMOi1r0ntU

Baby Alison

http://www.youtube.com/watch?v=za2FP9qglG0

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Questions About Korlym?

Feb 27 2012 10:38 PM | MaryO in Research and News

Have questions about the new Korlym? How about Korlym vs ketoconazole? About medical vs surgical treatment for Cushing's.
Ask Dr. Theodore Friedman.



Posted Image


Theodore C. Friedman, M.D., Ph.D. has opened a private practice, specializing in treating patients with adrenal, pituitary, thyroid and fatigue disorders. Dr. Friedman has privileges at Cedars-Sinai Medical Center and Martin Luther King Medical Center. His practice includes detecting and treating hormone imbalances, including hormone replacement therapy. Dr. Friedman is also an expert in diagnosing and treating pituitary disorders, including Cushings disease and syndrome.
Dr. Friedman's career reflects his ongoing quest to better understand and treat endocrine problems. With both medical and research doctoral degrees, he has conducted studies and cared for patients at some of the country's most prestigious institutions, including the University of Michigan, the National Institutes of Health, Cedars-Sinai Medical Center, and UCLA's Charles Drew University of Medicine and Science.
Read Dr. Friedman's First Guest Chat, November 11, 2003.
Read Dr. Friedman's Second Guest Chat, March 2, 2004.

Listen to Dr. Friedman First Live Voice Interview, January 29, 2009.
Listen to Dr. Friedman Second Live Voice Interview, March 12, 2009.
Listen to Dr. Friedman Third Live Voice Interview, February 13, 2011.



Listen live at http://www.blogtalkr...es-for-cushings
Call in to ask your question at
(646) 200-0162
This interview will be archived afterwards at the same link and on iTunes Cushie Podcasts

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FDA approves Korlym for patients with endogenou...

Feb 17 2012 09:45 PM | MaryO in Research and News

FDA NEWS RELEASE

For Immediate Release: Feb. 17, 2012
Media Inquiries: Morgan Liscinsky, 301-796-0397; morgan.liscinsky@fda.hhs.gov
Consumer Inquiries: 888-INFO-FDA

FDA approves Korlym for patients with endogenous Cushing’s syndrome
Today, Korlym (mifepristone) was approved by the U.S. Food and Drug Administration to control high blood sugar levels (hyperglycemia) in adults with endogenous Cushing’s syndrome. This drug was approved for use in patients with endogenous Cushing’s syndrome who have type 2 diabetes or glucose intolerance and are not candidates for surgery or who have not responded to prior surgery. Korlym should never be used (contraindicated) by pregnant women.

Prior to FDA’s approval of Korlym, there were no approved medical therapies for the treatment of endogenous Cushing’s syndrome.

Endogenous Cushing’s syndrome is a serious, debilitating and rare multisystem disorder. It is caused by the overproduction of cortisol (a steroid hormone that increases blood sugar levels) by the adrenal glands. This syndrome most commonly affects adults between the ages of 25 and 40. About 5,000 patients will be eligible for Korlym treatment, which received an orphan drug designation by the FDA in 2007.

Korlym blocks the binding of cortisol to its receptor. It does not decrease cortisol production but reduces the effects of excess cortisol, such as high blood sugar levels.

The safety and efficacy of Korlym in patients with endogenous Cushing’s syndrome was evaluated in a clinical trial with 50 patients. A separate open-label extension of this trial is ongoing. Additional evidence supporting the agency’s approval included several safety pharmacology studies, drug-drug interaction studies and published scientific literature. Patients experienced significant improvement in blood sugar control during Korlym treatment, including some patients who had marked reductions in their insulin requirements. Improvements in clinical signs and symptoms were reported by some patients.

The most common side effects experienced by endogenous Cushing’s syndrome patients treated with Korlym in clinical trials were nausea, fatigue, headache, arthralgia, vomiting, swelling of the extremities, dizziness and decreased appetite. Other side effects of Korlym include adrenal insufficiency, low potassium levels, vaginal bleeding and a potential for heart conduction abnormalities. Certain drugs used in combination with Korlym may increase its drug level. Health care professionals must be aware of the potential for drug-drug interactions and adjust dosing or avoid using certain drugs with Korlym.

Korlym should never be used by pregnant women. Although pregnancy is an extremely rare occurrence in Cushing’s syndrome patients because of the suppressive effect of excess cortisol on female reproductive function, Korlym will carry a Boxed Warning advising health care professionals and patients that the therapy will terminate a pregnancy.

The FDA has determined that a Risk Evaluation and Mitigation Strategy (REMS) is not necessary for Korlym to ensure that the benefits outweigh the risks for patients with endogenous Cushing’s syndrome. Several factors were considered in this determination including the following:
  • There are no other approved medical therapies for this debilitating form of Cushing’s syndrome and very sick patients would suffer if impediments to access were imposed.
  • The number of Cushing’s syndrome patients who will require treatment with Korlym is small, with an estimated 5,000 patients being eligible for treatment.
  • The number of health care professionals in the United States who would potentially prescribe Korlym is very small and highly specialized. They are familiar with the risks of Korlym treatment in the endogenous Cushing’s syndrome population and frequently monitor patient status.
  • The risks of Korlym treatment in the intended population can be managed through physician and patient labeling. The risks associated with Korlym will be outlined in a medication guide for patients.
The company has voluntarily proposed distributing Korlym through a central pharmacy to ensure the timely, convenient and appropriate delivery of the drug to Cushing’s patients or to the health care institutions where this therapy may be initiated. Most retail pharmacies are unlikely to keep adequate supplies of the drug for this rare condition and central distribution will give patients with Cushing’s syndrome better access to Korlym.
Korlym is manufactured by Corcept Therapeutics of Menlo Park, Calif.

For more information:The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.

#

Visit the FDA on Facebook

RSS Feed for FDA News Releases [what is RSS?]
Page Last Updated: 02/17/2012

From http://www.fda.gov/N...s/ucm292462.htm

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Pituitary Videos

Jan 20 2012 07:11 PM | MaryO in Media

Note: The Cushings Help Community is not responsible for any of the content in these videos. We cannot guarantee accuracy of any of this information.

Pituitary Anatomy

http://www.youtube.com/embed/-FfXZ0M2SsU (Click on link to view)

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Cushing's Videos

Jan 20 2012 07:00 PM | MaryO in Media

Note: The Cushings Help Community is not responsible for any of the content in these videos. We cannot guarantee accuracy of any of this information.

Cushing's Disease - USMLE Study Songs

http://www.youtube.com/watch?v=Lb0Wg2oIxMA

Read story →    8 comments    -----

Dr. Friedman Interviews

Jan 26 2012 06:01 PM | MaryO in Media

From http://www.cushie.in...media&Itemid=18


Posted ImageTheodore C. Friedman, M.D., Ph.D. has opened a private practice, specializing in treating patients with adrenal, pituitary, thyroid and fatigue disorders. Dr. Friedman has privileges at Cedars-Sinai Medical Center and Martin Luther King Medical Center. His practice includes detecting and treating hormone imbalances, including hormone replacement therapy. Dr. Friedman is also an expert in diagnosing and treating pituitary disorders, including Cushings disease and syndrome.

Dr. Friedman's career reflects his ongoing quest to better understand and treat endocrine problems. With both medical and research doctoral degrees, he has conducted studies and cared for patients at some of the country's most prestigious institutions, including the University of Michigan, the National Institutes of Health, Cedars-Sinai Medical Center, and UCLA's Charles Drew University of Medicine and Science.

Read Dr. Friedman's First Guest Chat, November 11, 2003.
Read Dr. Friedman's Second Guest Chat, March 2, 2004.

Listen to Dr. Friedman First Live Voice Interview, January 29, 2009.
Listen to Dr. Friedman Second Live Voice Interview, March 12, 2009.
Listen to Dr. Friedman Third Live Voice Interview, February 13, 2011.


Read story →    0 comments    -----

Cortisol Videos

Jan 20 2012 06:56 PM | MaryO in Media

Note: The Cushings Help Community is not responsible for any of the content in these videos. We cannot guarantee accuracy of any of this information.

Cortisol Connection (Burn fat, stop pain)

Learn why elevated cortisol hormone levels and Adrenal Fatigue can cause weight gain and pain. Testing via Saliva. You will not be able to burn fat if you have high cortisol.

http://www.youtube.com/watch?v=z1CPcQPwQkY

Read story →    6 comments    -----