Filed under: Cushing's, Thankfulness | Tagged: 40 Days, Cushing's, empowered, MaryO, NIH, Thankfulness | Leave a comment »
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:
- Your Profile
- Contact Us
- Member List
- How To Add Friends
- Local Liaisons
- Pen Pals
- Add an Article!
- Access the Archives. News items and abstracts are archived after one month
- Calendar: Add Events
- Calendar: Add a Meeting Venue
- Photos and Images
- Upload Images
- Submit a Link
- Track Health & Fitness Achieve your goals, print charts for your doctors. Add anything else that you would like to track. These are private graphs, available only to you.
- A special menu along the bottom of each page where you can take notes, make changes to your profile, subscribe to RSS feeds and much more.
- Add your Twitter user name and the last 10 “tweets” will show up in your profile for other members to see
- Members can submit links (URLs), send each other PMs, email each other directly, add avatars, add Helpful Doctors and rate current ones or add reviews. They can also add articles, events and meeting venues. Some articles are available to members only.
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…
Filed under: Cushing's | Tagged: Alice Stamm (Dearest), buffalo hump, Cushing's, Cushing's Help, endocrinologist, gynecologist, hirsuitism, MaryO, message boards, moon face, nap, NIH, pituitary, Power Surge, Robin (staticnrg), surgery, tired, transsphenoidal, website, weight | Leave a comment »
Cushing’s iPhone/iPod Apps
Posted on March 4, 2010 by MaryO
Coming soon! A Cushing’s App for the iPod/iPhone. There’s a mockup you can play with at http://bit.ly/91hdQw
Right now it has Podcasts, Cushing’s News, Latest Bios, Upcoming Events, Blog, Twitter, NIH Trials, the latest posts on the Message Boards, Helpful Links, New MDs, Johns Hopkins, Mayo Clinic, PubMed, WebMD.
More may be added before this goes live later this month.
People have suggested symptoms and/or drug trackers. Robin found us a really neat way to make our own individual specially tailored apps.
The following directions are adapted from http://www.doseofdigital.com/2010/01/build-iphone-medication-tracker-10/ and could also be used to track surgeries, weight, anything you want.
How to Build Your Own iPhone Tracker/Reminder System:
1) First, go to Google Docs. Start a new spreadsheet and fill in the columns you want to track. Like this:
You can see that this example tracks weight, whether or not meds were taken, and how you feel.
2) Create a form (click “Form”–>”Create a form”). The form will already have your column headers populated as questions automatically (you don’t need to add a column for date or time, as Google will do this automatically).
You’ll then have a form like this:
You can add a little flair via the “Theme” selector.
You can also change the “Took Medication” into a multiple choice question and the “I Feel…” into a Likert scale, if you wish:
3) After you finish the form, email it to yourself. When you get the email, open it on your iPod/iPhone. Follow the link and this is what you’ll get:
Tah dah. A form on your phone that you can fill out. Fill it out and submit it. Each time you fill out the form, it automatically adds the data to the right spot in your spreadsheet. Like so:
Cool, right?
4) Wondering how your doing without having to look at the spreadsheet? No problem. When editing your form, select “More actions” –> “Edit confirmation.” Check the “Let everyone see response summary” box.
Now, every time you complete the form, you’ll get a confirmation screen with a link to a summary screen. Here it is:
5) What’s that? You don’t want to have to click a link in an email (that you’ll probably lose) every day to get to the form. Me neither. So, when you have the form open, click that little “+” sign at the bottom of the screen and you’ll get this:
Select “Add to Home Screen”. You’ll then get a screen asking you to name your icon and then you can place it anywhere on your iPod/iPhone. Viola.
Check it out…it’s even got the fancy theme to make the icon look good.
So, every time you need to record your medication (or whatever), just click the icon and fill out the form. Done.
6) Need a reminder?
Go to your Google Calendar and set up a recurring “meeting” for yourself. Like so:
Now, you’ll get an email reminding you to complete your tracker.
7) Need more help? Discuss this on the message boards.
Filed under: Cushing's | Tagged: apps, Cushing's, iPhone | Leave a comment »
Would you be interested in a Cushing’s iPhone/iPod app?
Posted on February 3, 2010 by MaryO
I’ve made a mockup you can play with at http://bit.ly/91hdQw
It has the podcasts, upcoming events, latest bios, newest doctors, Cushings Tweets, blog and news/abstracts.
It’s all made – I just have to pay the site to make this live.
I don’t know if it would be worth it, though – it would cost $199.
What do you think?
Filed under: Cushing's, podcast | Tagged: Cushing's, podcast | Leave a comment »
New! Cushie Tools
Posted on January 9, 2010 by MaryO
I saw this on another site and I stayed up all night making one for Cushies because I thought it was so cool.
This is a toolbar you can install on any browser and it will link to what I think are the most important parts of the Cushing’s websites. If you have other ideas, please let me know.
Right now, this contains (from left to right)
- The Cushie ribbon icon which takes you to the home page of the newer cushie.info site. Click on the little down arrow to the right of the ribbon and another whole menu appears!
- Next to that is a Google search box.
- An icon for the 911 Adrenal Crisis! page
- A link to the Cushie Reads book recommendations page on amazon.com
- The Cushie Calendar
- All the bios, arranged by diagnosis type
- Add (or update) your bio
- Our locations around the world
- The message boards and chatroom
- Helpful Doctors list
- Add (or update) your Helpful Doctor
- The Support page where people can make donations to help keep all these websites going.
- A little scrolling message area for Cushing’s news.
- Cushing’s blogs. I’m still working on this – and I’m not sure how many I can add but for the moment, this blog is included as well as Cushie Bloggers and survive the journey
When any of these update, the icon changes to show that there are new posts.
This area now includes NIH Clinical trials for Cushing’s, pituitary and adrenal. Be the first to know when new trials are listed.
- The Cushings Help Organization cause on Facebook
- Links to Staticnrg and Cushings on Twitter. Again, more can be added. If you talk mostly about Cushing’s on Twitter, please let me know.
- The new CushieWiki. BTW, please feel free to sign up and become a contributor/editor.
- A radio button – you can play the Cushing’s podcasts right from this toolbar. You can also add stations that you’d like to listen to.
- You can also add other modules like games, weather, email, hundreds of different things.
Download this toolbar or see a sample.
About privacy:
cushie tools is committed to maintaining the following privacy practices:
- No Spyware Policy – the toolbar does not collect or transmits Identifiable information and does not monitor personal toolbar usage.
The toolbar sends unidentifiable and non-personal statistical data to enable quality assurance and improve support processes. Such non-personal data includes unidentifiable usage of toolbar components and queries. You can opt not to send such statistical data at any time from your toolbar Options dialog box. - No Adware Policy : exposure to unwanted advertisements is not required in order to use the toolbar. The toolbar does not launch pop-up or pop-under advertisement windows or any other type of obtrusive ads.
- Unobtrusive: The toolbar does not enable other applications to access data stored on your computer’s hard drive or in your online accounts. The toolbar does not modify pages you visit or modify your search experience. You may voluntarily opt to receive Publisher notifications (such as Community Alerts) or use other advanced functionalities offered by cushie tools.
- Easy uninstall : you can easily uninstall the toolbar at any time using the toolbar’s standard uninstall package (Add/Remove Programs in Windows, Add-on Removal in Firefox, etc.).
- Easy deactivation: you can easily deactivate your toolbar at any time by clicking the “View” menu in your browser and deselecting the name of your community toolbar.
- Full control : you have full control over your toolbar and you can add/remove toolbar components at any time using your toolbar’s Options dialog box.
-
Report – cushie tools is committed to ensuring your Privacy and safety while using your community toolbar. If you have a reason to believe that your rights have been infringed upon, please email privacy@conduit.com to contact the owners of Platform that was used by cushie tools to create your community toolbar, and your application will be handled at the earliest convenience.
Finally, I would like to add that installing this toolbar is possibly a way for the sites to make a little money although the hosting site doesn’t disclose how much they give back and how many people have to do how much searching to make any kind of profit.
The theory is that Google pays the host company, Conduit, like it does for Google ads – I’ve seen them on other sites but have never used them because I want to try to keep the sites ad free and non-tacky. Then, depending on the number of people who have installed this toolbar, and how much they use it, a percentage of that money is supposed to come back to Cushing’s Help.
I have no expectations of making any money, though. I just thought that it looked like an interesting new way for people to find things easily on the websites, listen to podcasts, and get the latest news.
Please note – after installation there’s a little popup window that says you might get alerts. I promise I won’t send those out unless it’s something serious like the boards are back up after a day of being down.
Thanks for reading! I hope you’ll give this a try.
Filed under: Cushing's | Tagged: Cushing's | Leave a comment »
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