40 Days of Thankfulness: Day Thirteen

Posted on October 24, 2010 by MaryO

Today I am thankful for my church choir.

I’ve had a long history with singing from the time I was a kid singing in the choir at my Dad’s church.  In High School we had a great choir and it was the time before “political correctness” would have banned us from singing such wonderful classical music like Brahms’ German Requiem.  In college, as a music major, there were choirs and when we finally got to our current home, I joined Sweet Adelines.

I was a member of Sweet Adelines for 10 years, before Cushing’s robbed me of that particular pleasure.  SA takes  lot of energy between rehearsals, performances, competitions, travelling.  I just loved it but I couldn’t keep up.

For a few years, I belonged to a local woman’s group but even that got to be too much after a while.  There wasn’t the travelling or the competitions but rehearsals and performances cut into that energy.

Last year, our choir director opened up the opportunity to sing for just the Christmas Cantata.  No long term committment and only half the rehearsal time for about 10 weeks.

I hadn’t sung anywere outside my car for about 10 years but, with trepidation, I signed up.  Because of my bell-ringing and work with children’s choirs, I knew most of the other choir members and that made it a LOT easier on shy-me.

Christmas came and singing with the choir and orchestra was just fantastic.  There was the invitation to stay, to become a part of the choir for good but I had my Cushing’s Interviews on Thursday nights and I couldn’t see how I could work all this in.

Last spring the choir sang How Lovely Is Thy Dwelling Place from Brahms’ German Requiem and I was hooked.  How could I not join?

So, I moved the interviews to Wednesday nights and Thursdays are free for choir rehearsals.

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40 Days of Thankfulness: Day Nine

Posted on October 18, 2010 by MaryO

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I am so thankful for all my doctors but today I am thankful for Dr. Amir Al-Juburi who saved my life by removing my kidney cancer (renal cell carcinoma).

In 2006 I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anaesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and became my new doctor.

When I was diagnosed in the ER with kidney cancer, Tom’s doctor said that he could do the surgery but that he would recommend someone even more experienced, Dr. Amir Al-Juburi.

Dr. Amir Al-Juburi has been so kind to me, almost like a kindly grandfather might be, and he got rid of all 10 pounds of my kidney and cancer.

I owe him, the original doctor, and my Cushing’s doctors (who will be featured later!), my life.

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40 Days of Thankfulness: Day Four

Posted on October 13, 2010 by MaryO

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40 Days of Thankfulness: Day One

Posted on October 10, 2010 by MaryO

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Ten Years of Cushing’s Help and Support!

Posted on July 21, 2010 by MaryO

Ten years ago yesterday I was talking with my dear friend Alice, who runs a wonderful menopause site, 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.  We decided that I could.

This website (http://www.cushings-help.com ) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I’ve made  some helpful differences in someone else’s life.

Who could have known how this site – now sites – could have grown and grown.

It started as a one-page bit of information about Cushing’s  In people, not dogs, horses, ferrets…

Then, it started growing and growing, taking on a life of its own.  To truly emulate Alice, I added message boards in September.  They were really low-quality, a type put together by an old HTML editor but we had members and actually had discussions.

Not too long after, a real board was opened up and things really started happening.  Then we outgrew that board and ended up in our current home.

The message boards are still very active and we have weekly online text chats, 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.

Things have changed over the years, though.  The original Cushings-Help site is still updated with new bios, new Helpful Doctor listings, meetings and more but all new articles have moved to a new site – http://www.cushie.info/ – which is much easier to maintain than the older strictly-HTML site.

Also new are a CushieWiki, several blogs (of which this is one), three Facebook entities (Cushing’s Help Cause; Cushing’s Help and Support Group; and the Cushings Help Organization, Inc.); a Twitter stream and much more.

New recently:

NEW! Daily News Summary at Cushing’s Daily News

NEW! cushie.info is now optimized for viewing on PDAs and mobile phones

NEW!  Medical Centers. These are centers which specialize in Cushing’s, pituitary or adrenal patients.  If you, as a patient, have one that you’d like to have added, please send any info you may have to Mary O’Connor (MaryO).  Thank you!

Occasional Newsletters are Back: Members of cushie.info will automatically receive these occasional newsletters. Of course, you may opt-out at any time. Thank you for your interest.  Non-members may subscribe through the Newsletter Subscription module on the left side of this page.

Cushie Toolbar: Be the first to know! The Cushie Toolbar features a Google search box, the 911 Adrenal Crisis! page, the Cushie Reads book recommendations page, Cushie Calendar, all the bios, arranged by diagnosis type or date, add (or update) your bio, our locations around the world, the message boards and chatroom, Helpful Doctors list, add (or update) your Helpful Doctor, support page, scrolling message area for Cushing’s news, Cushing’s blogs, NIH Clinical trials for Cushing’s, pituitary and adrenal, the Cushings Help Organization cause on Facebook, Staticnrg and Cushings on Twitter, new CushieWiki and listen to the Cushing’s podcasts right from this toolbar.

CushieWiki: Please feel free to contribute! The CushieWiki is an ever-changing, ever-growing body of Cushing’s knowledge provided by *YOU* and other patients.

Members of the cushie.info site have additional features:

We’ve grown out of control from that simple one-page info sheet to way more than I could have ever imagined in that phone conversation with my friend.  I would never have thought that I could do any of this, provide these services and touch the lives of so many others.

I also never thought that I would spend hours a day updating, adding, improving, helping, emailing, phoning, paperwork, writing…

But it’s all worth it if the lives of other Cushies are made better.

Here’s to another 10 years…

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