😍 Mary Kelly O’Connor, Person of the Month-May 2018

 

The EPIC Foundation would like to recognize Mary Kelly O’Connor as a pioneer in the Cushing’s community as an advocate and life changer! Mary Kelly O’Connor is Person of the Month for May, 2018!

Mary Kelly O’Connor is the founder of Cushing’s Help and has been providing support to the Cushing’s community for almost 20 years! Mary’s life changed in 1983! She began noticing several weird symptoms. The first symptom she noticed was an abrupt cessation of her menstrual period. Her gynecologist confirmed that she was not pregnant but had no good explanation for why this was happening. Then she began experiencing extreme fatigue which required her to take frequent naps throughout the day.

Many weird and seemingly random symptoms began appearing. Mary grew a beard (Hirsutism), gained weight even though she was on Weight Watchers and working out at the gym nearly every day, developed chronic pain, developed what is called a “moon face” and a “buffalo hump” on the back of her neck, and developed stretch marks. Mary also developed mood symptoms including depression.

Mary eventually came across a little article in the Ladies Home Journal magazine that said “If you have these symptoms…ask your doctor about Cushing’s”. After that, Mary began assertively seeking answers. However, doctors would say that Cushing’s Disease is too rare and that there was no possible way that she had it!

In 1986, Mary developed a symptom that really caught her husband’s attention-she began bruising very easily and bleeding under her skin. Fortunately, the Hematologist/Oncologist ran a twenty-four hour urine test and really looked into a possibility of Cushing’s. Mary was referred to an endocrinologist who ran further tests.

The endocrinologist confirmed Cushing’s but ultimately Mary O was referred to NIH (National Institutes of Health). NIH was doing a clinical trial of Cushing’s. While she was at NIH, Mary O was gaining about a pound a day! Adrenal Cushing’s was ruled out so they knew that the tumor, which was the culprit, was in the pituitary.

The MRI was not able to locate the tumor which is typical with Cushing’s pituitary tumors. The next step was an Inferior Petrosal Sinus Sampling Test, IPSS. Ultimately, this test did show where her tumor was located.

On November 3, 1987, the surgeon, Dr. Ed Oldfield, performed the brain surgery to treat Mary O’s Cushing’s Disease. Mary O achieved remission from Cushing’s and she gets tested regularly to confirm that she has sustained remission.

Because of Mary O’s experience of being sick and the difficulty in finding help and a diagnosis, she decided to create a safe space to support others and to increase awareness. The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then expanded. Today, in 2017, they have thousands of members!

Mary O is the pioneer for bringing people together in this format from all over the world! This is incredible considering that this was not even a concept when she was going through her journey in the 80s! This has become a movement of empowerment, as people are participating in their own diagnosis, testing, and treatment! Also, it was very difficult for patients to connect with one another many years ago. However, now, thanks to Mary O, patients are able to reach each other and not feel so alone!

Mary O has a blog radio show where she has conducted interviews with influential people in the community including doctors, mental health experts, and other professionals. She has also been able to interview many patients who heal by sharing their stories with each other.

Mary O wants to support, educate, and share! She has been able to provide support to an entire community of people on her own and with very little funding. She puts her heart and soul into this work because she cares deeply about this community! Mary O has been able to turn her adversity into an opportunity to walk in her purpose to change lives!

Mary Kelly O’Connor is definitely someone you should know! The EPIC Foundation proudly works in alliance with Mary Kelly O’Connor the founder of Cushing’s Help, a foundation dedicated to giving Cushing’s patients valuable information, a space to share their stories, and a place to connect with one another. To learn more information about Mary O and her work, you can go to her website at http://cushings-help.com/ Together, We are EPIC!

From http://www.epictogether.org/mary-oconnor/

🦓 Day 19: Cushing’s Awareness Challenge 2018

In case you haven’t guessed it, one of my causes seems to be Cushing’s Awareness.  I never really decided to devote a good portion of my life to Cushing’s, it just fell into my lap, so to speak – or my laptop.

I had been going along, raising our son, keeping the home-fires burning,  trying to forget all about Cushing’s.  My surgery had been a success, I was in remission, some of the symptoms were still with me but they were more of an annoyance than anything.

I started being a little active online, especially on AOL.  At this time, I started going through real-menopause, not the fake one I had gone through with Cushing’s.  Surprisingly, AOL had a group for Cushing’s people but it wasn’t very active.

What was active, though, was a group called Power Surge (as in I’m not having a hot flash, I’m having a Power Surge).  I became more and more active in that group, helping out where I could, posting a few links here and there.

Around this time I decided to go back to college to get a degree in computer programming but I also wanted a basic website for my piano studio.  I filled out a form on Power Surge to request a quote for building one.  I was very surprised when Power Surge founder/webmaster Alice (AKA Dearest) called me.  I was so nervous.  I’m not a good phone person under the best of circumstances and here she was, calling me!

I had to go to my computer class but I said I’d call when I got back.  Alice showed me how to do some basic web stuff and I was off.  As these things go, the O’Connor Music Studio page grew and grew…  And so did the friendship between Alice and me.  Alice turned out to be the sister I never had, most likely better than any sister I could have had.

In July of 2000, Alice and I were wondering why there weren’t many support groups online (OR off!) for Cushing’s. This thought percolated through my mind for a few hours and I realized that maybe this was my calling. Maybe I should be the one to start a network of support for other “Cushies” to help them empower themselves.

I wanted to educate others about the awful disease that took doctors years of my life to diagnose and treat – even after I gave them the information to diagnose me. I didn’t want anyone else to suffer for years like I did. I wanted doctors to pay more attention to Cushing’s disease.

The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then led to a larger one, and a larger. Today, in 2018, we have over 12 thousand members. 12,818 to be exact.  Some “rare disease”!

This was on the intro page of Cushing’s Help until 2013…

I would like to give abundant thanks Alice Lotto Stamm, founder of Power Surge, premier site for midlife women, for giving me the idea to start this site, encouraging me to learn HTML and web design, giving us the use of our first spiffy chatroom, as well as giving me the confidence that I could do this. Alice has helped so many women with Power Surge. I hope that I can emulate her to a smaller degree with this site.

Thanks so much for all your help and support, Alice!

In August 2013 my dear friend died.  In typical fashion, I started another website

I look around the house and see things that remind me of Alice.  Gifts, printouts, silly stuff, memories, the entire AOL message boards on floppy disks…

Alice, I love you and will miss you always…

 

MaryOOneRose

🎂 Cushings Help is almost 17!

It’s Nearly Our Birthday!

It’s unbelievable but the idea for Cushing’s Help and Support arrived 17 years ago tonight. I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could.

Thanks to a now defunct Microsoft program called FrontPage, the first one-page “website” (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000.

Stay tuned for the celebration tomorrow!

Day 18: Cushing’s Awareness Challenge 2017

In case you haven’t guessed it, one of my causes seems to be Cushing’s Awareness.  I never really decided to devote a good portion of my life to Cushing’s, it just fell into my lap, so to speak – or my laptop.

I had been going along, raising my son, keeping the home-fires burning,  trying to forget all about Cushing’s.  My surgery had been a success, I was in remission, some of the symptoms were still with me but they were more of an annoyance than anything.

I started being a little active online, especially on AOL.  At this time, I started going through real-menopause, not the fake one I had gone through with Cushing’s.  Surprisingly, AOL had a group for Cushing’s people but it wasn’t very active.

What was active, though, was a group called Power Surge (as in I’m not having a hot flash, I’m having a Power Surge).  I became more and more active in that group, helping out where I could, posting a few links here and there.

Around this time I decided to go back to college to get a degree in computer programming but I also wanted a basic website for my piano studio.  I filled out a form on Power Surge to request a quote for building one.  I was very surprised when Power Surge founder/webmaster Alice (AKA Dearest) called me.  I was so nervous.  I’m not a good phone person under the best of circumstances and here she was, calling me!

I had to go to my computer class but I said I’d call when I got back.  Alice showed me how to do some basic web stuff and I was off.  As these things go, the O’Connor Music Studio page grew and grew…  And so did the friendship between Alice and me.  Alice turned out to be the sister I never had, most likely better than any sister I could have had.

In July of 2000, Alice and I were wondering why there weren’t many support groups online (OR off!) for Cushing’s. This thought percolated through my mind for a few hours and I realized that maybe this was my calling. Maybe I should be the one to start a network of support for other “Cushies” to help them empower themselves.

I wanted to educate others about the awful disease that took doctors years of my life to diagnose and treat – even after I gave them the information to diagnose me. I didn’t want anyone else to suffer for years like I did. I wanted doctors to pay more attention to Cushing’s disease.

The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then led to a larger one, and a larger. Today, in 2017, we have over 12 thousand members. 12,818 to be exact.  Some “rare disease”!

This was on the intro page of Cushing’s Help until 2013…

I would like to give abundant thanks Alice Lotto Stamm, founder of Power Surge, premier site for midlife women, for giving me the idea to start this site, encouraging me to learn HTML and web design, giving us the use of our first spiffy chatroom, as well as giving me the confidence that I could do this. Alice has helped so many women with Power Surge. I hope that I can emulate her to a smaller degree with this site.

Thanks so much for all your help and support, Alice!

In August 2013 my dear friend died.  In typical fashion, I started another website

I look around the house and see things that remind me of Alice.  Gifts, print outs, silly stuff, memories, the entire AOL message boards on floppy disks…

Alice, I love you and will miss you always…

 

MaryOOneRose

16 Years of Help and Support.

happybirthday-2015

It’s unbelievable but the idea for Cushing’s Help and Support arrived 16 years ago tonight.  That’s a long time for anything online.

I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I’m making some helpful differences in someone else’s life!

The message boards are very active and we have weekly online text chats, occasional live interviews, local meetings, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Of course, we now have a Facebook page and 2 groups.  Both are secret, so if you want to join, please email  or PM me for an invitation.

Other sites in the Cushing’s Help “Family”

maryo colorful zebra

Day 19, Cushing’s Awareness Challenge 2016

In case you haven’t guessed it, my cause seems to be Cushing’s Awareness.  I never really decided to devote a good portion of my life to Cushing’s, it just fell into my lap, so to speak – or my laptop.

I had been going along, raising my son, keeping the home-fires burning,  trying to forget all about Cushing’s.  My surgery had been a success, I was in remission, some of the symptoms were still with me but they were more of an annoyance than anything.

I started being a little active online, especially on AOL.  At this time, I started going through real-menopause, not the fake one I had gone through with Cushing’s.  Surprisingly, AOL had a group for Cushing’s people but it wasn’t very active.

What was active, though, was a group called Power Surge (as in I’m not having a hot flash, I’m having a Power Surge).  I became more and more active in that group, helping out where I could, posting a few links here and there.

Around this time I decided to go back to college to get a degree in computer programming but I also wanted a basic website for my piano studio.  I filled out a form on Power Surge to request a quote for building one.  I was very surprised when Power Surge founder/webmaster Alice (AKA Dearest) called me.  I was so nervous.  I’m not a good phone person under the best of circumstances and here she was, calling me!

I had to go to my computer class but I said I’d call when I got back.  Alice showed me how to do some basic web stuff and I was off.  As these things go, the O’Connor Music Studio page grew and grew…  And so did the friendship between Alice and me.  Alice turned out to be the sister I never had, most likely better than any sister I could have had.

In July of 2000, Alice and I were wondering why there weren’t many support groups online (OR off!) for Cushing’s. This thought percolated through my mind for a few hours and I realized that maybe this was my calling. Maybe I should be the one to start a network of support for other “Cushies” to help them empower themselves.

I wanted to educate others about the awful disease that took doctors years of my life to diagnose and treat – even after I gave them the information to diagnose me. I didn’t want anyone else to suffer for years like I did. I wanted doctors to pay more attention to Cushing’s disease.

The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then led to a larger one, and a larger. Today, in 2012, we have over 8 thousand members. Some “rare disease”!

This was on the intro page of Cushing’s Help until 2013…

I would like to give abundant thanks Alice Lotto Stamm, founder of Power Surge, premier site for midlife women, for giving me the idea to start this site, encouraging me to learn HTML and web design, giving us the use of our first spiffy chatroom, as well as giving me the confidence that I could do this. Alice has helped so many women with Power Surge. I hope that I can emulate her to a smaller degree with this site.

Thanks so much for all your help and support, Alice!

In August 2013 my friend died.  In typical fashion, I started another website

I look around the house and see things that remind me of Alice.  Gifts, print outs, silly stuff, memories, the entire AOL message boards on floppy disks…

Alice, I love you and will miss you always…

MaryOOneRose