Debbi, I think you have me confused with Kate, the author of the article. My surgery was in 1987, so it's been more than a year.

That being said - my symptoms are pretty much improved although I'm still very tired and have to nap every day.

Thanks so much for your feedback, Cubuffalo!

I'm sorry you're dealing with this again and I hope that you have a better/easier time of it this time around.

Do you have any tips you'd like to see added to this list?

Best of luck with your testing!

I just found a new iPhone app today which looks pretty good. You can add family members and send the info to another phone so everyone has the info they need. It's only $.99 in the iTunes store:

It's called Capzule PHR and the website is http://capzule.com/phr/ with help files at http://capzule.com/phr/phrhowto.html

There's a free version to try called Capzule PHR Free

Features

* Push Notification to alert appointments
* Data Visualization via Interactive Timeline
* Edit records and upload files from Desktop/Laptop
* Record conditions and allergies
* Store doctor appointments
* Enter medications
* Email summary and graphs
* Print or download summary from Desktop/Laptop
* Maintain immunization records
* Enter vitals in Metric or Standard units
* Analyze line graphs of vitals and lab results
* Keep family, social, and medical history together
* Create custom health screening templates
* Enter notes, upload results and files
* Manage physician and insurance information
* Reset password when password is lost
* Categorize Notes and Attachments
* Email flowsheet data in CSV format along with graphs
* Email Summary with graphs embedded
* Backup and Restore from Desktop/Laptop
* Export CSV data from Desktop/Laptop
* Email documents
* Add files from other Apps (iOS 3.2+)
* Summary Reporting Filter

Part 2 of this post with a new mobile app from the NIH is here: http://www.cushie.info/blog/2010/01/22/iphone-med...

Thanks, Ann. I've seen news articles to this effect, too. One of them is here: http://cushingshelp.blogspot.com/2009/02/king-hen...

Best of luck to you with your research!

Here is another type of Medic Alert bracelet that I just read about: http://news.yahoo.com/s/ap/20091222/ap_on_he_me/u...

'Invisible bracelet' for emergency health alerts?

By LAURAN NEERGAARD, AP Medical Writer Lauran Neergaard, Ap Medical Writer – Tue Dec 22, 10:32 am ET

WASHINGTON – Emergency health alerts for the Facebook generation? The nation's ambulance crews are pushing a virtual medical ID system to rapidly learn a patient's health history during a crisis — and which can immediately text-message loved ones that the person is headed for a hospital.

The Web-based registry, invisibleBracelet.org, started in Oklahoma and got a boost this fall when the state's government made the program an optional health benefit for its own employees.

Now the Invisible Bracelet attempts to go nationwide as the American Ambulance Association next month begins training its medics, who in turn will urge people in their communities to sign up.

For $5 a year, basic health information and up to 10 emergency contacts are stored under a computer-assigned PIN number that's kept on a wallet card with your driver's license, a key fob or a sticker on an insurance card.

It's a complement to the medical alert jewelry that people with diabetes, asthma and a host of other conditions have used for decades to signal their needs in an emergency.

And it comes as the American College of Emergency Physicians is trying to determine just what information is the most critical for medics and ER doctors to find when you're too ill or injured to answer questions, so that competing emergency-alert technologies don't miss any of the essentials.

"Too many times, we don't have the information to help us treat the patients correctly," says James Finger, president of the American Ambulance Association, the largest network of emergency medical service providers.

Not everyone who should wear a medical alert bracelet does, costing EMS workers precious minutes determining, for example, if someone's incoherent because he's having a stroke or because he's a diabetic with dangerously low blood sugar.

Even someone too healthy for those bracelets may have some condition that could help emergency workers make a faster diagnosis, avoid a medication reaction — or track down their next-of-kin faster.

The question is how to make sensitive medical data easily accessible to emergency workers without violating federal health-privacy laws. Options range from simple bracelets to pricier key-chain flash drives, implanted microchips — and call-centers that relay stored health records and notify relatives when an alarm or medic's phone call activates the system.

Rapid family notification is crucial, says Stephen Williamson, president of Oklahoma's Emergency Medical Services Authority — and one reason his EMS provider recently trained to use the new Invisible Bracelet.

A medical alarm necklace Williamson bought for his mother promptly called an ambulance when she fell, but didn't alert him as promised until 11 hours after he learned of her hospitalization on his own.

And when his wife suffered a brain aneurysm a year ago, Williamson called 911 and got her in the ambulance — only to freeze, unable to remember how to contact their daughters.

"I'm in the business of emergencies. ... But I just stared at my phone. I couldn't figure out for, honest to God, five minutes it seemed like, 'What do I do?'" Williamson recalls. "I'd much rather have known that's being handled and left for the hospital."

Enter the Invisible Bracelet. Only authorized medics can access a Web site that reads the PIN and opens the health info they use to treat. Then, with a push of a button, the medic chooses an area hospital for transport. Simultaneously, the up to 10 people listed to be notified by text or e-mail get that message.

EMS providers couldn't show data yet on how well it works. But nearly 100,000 people have enrolled since the service opened in Oklahoma in April, says Noah Roberts of the Tulsa-based Docvia health software company, and the University of Oklahoma is preparing to use it for a campus registry.

The ultimate goal is an electronic medical record for everyone, available no matter where they are, says Dr. Andrew I. Bern, an ACEP board member and emergency physician in south Florida.

That's years away. Until then, ACEP is preparing recommendations for the most important information to overcome what Bern calls "the limited real estate" on emergency bracelets and wallet cards, and the problem of outdated information when people forget to update their records.

No one's immune: 120 million people needed emergency care last year, Bern notes. So in choosing whichever of today's emergency-information systems most fits your lifestyle, he stresses to keep it up to date.

"You have to be a partner in this whole process, gathering the information," he says. "If it's not current, it's not that useful."

___

EDITOR's NOTE — Lauran Neergaard covers health and medical issues for The Associated Press in Washington.

More comments from Facebook:

* I've spoken with a few people. But honestly... I see someone that looks cushie so often that I drag my husband into it asking him "hump or no hump" and forcing him to stare too.

The last time I actually spoke to someone was at a knitting event. I started by asking her if she was taking steroids for something. It turned out that she'd been diagnosed with lupus and had gained 100 pounds in a year from the steroid treatments she was on.

* Yes, I do by telling them by story and handing out little cards with information about the disease.

Kim, thanks for responding. I really don't think that they were attacking you. I think that they just saw an anonymous someone and used your story to tell their views on health care.

I'm amazed that you can work that much - personally, my energy levels are too low to do nearly what you're doing.

Best of luck with everything. I hope you can cut back on all that work soon and get rid of the flu!

What you're going through is way too much for even a healthy person. For one with Cushing's, it's way more than you need.

More comments from FaceBook at http://www.facebook.com/home.php?#/note.php?note_... :

If the government caused all this trouble to begin with, then isn't it a good thing that a NEW government is trying to fix those mistakes?

Advancements in medicine happen fine in Japan and they are socialized in medicine. In some ways, they are more advanced then we are.

Everyone has to pay for my care? What do you think is going to happen if your family or yourself gets sick and you lose your job. Right now, I am paying into the system: both my husband and I. Yes, we are paying for those who cannot. Yes, we are pay taxes! Are you surprised? So, please don't put words in my mouth making it seem I just want to lie back and make money off of hard working people... --- just for the sake of it. That's not the case. Re-read what I wrote. ... Read More

Now that you know my family's personal situation, WHAT WOULD YOU do considering the circumstances should my husband lose his work? Please answer. Like I said, either way you roll the dice, we would still be utilizing tax dollars. Most of the US is run by state, local and federal public offices. You side says everything run by the government sucks. Is that true with every thing run by the government like the military etc. What about private companies... does this mean you think because it's private that they are immune to mistakes and corruption?

Based ON TOPIC --- what Mary wrote, what advice would you give to the woman's life who is in danger and she's working two jobs? Is she just lazy too just wanting you to pay for her health care?

I'm sorry... I can't go on. You obviously didn't read all of what I have written here and I'm not going to repeat myself. If you did read it, you are misunderstanding me.

This is not about Left or Right, it's about what the heck do we do if my husband loses his job. There are layoffs going on like crazy right now in his office. And I'm scared. Put the political talking points aside....

~~~~~

And how in the world is Health Care Reform unconstitutional? Which amendment of the constitution is it breaking?

Just curious.

This is apparently a hot topic!

More comments from FaceBook at http://www.facebook.com/home.php?#/note.php?note_... :

If my husband loses his job (which could be soon), we will lose our insurance. And then, all the meds that keep me alive and working a job, I won't be able to take any longer. I may get very very sick as I have multiple medical issues. And then I won't be able to work. The Cobra insurance my husband would get is too expensive for us to afford. In any event, I would not be too happy being sick and unable to work. And then there's hubby without a job.
Then what? If there is no reform or a public option, Fritz and I won't survive.. at all. Does anyone have any better ideas?

Not all socialized care requires a waiting list. I used to live in Japan and there were no waiting lists. It works the same as the US. And it's socialized. And the Japanese are innovators, so they are as high tech over there as they are here... if not even better! I got excellent treatment for my medical problems in Japan. It's a private-public system. The same Obama wants to legislate. This way, people have a CHOICE! If ya'll are happy with your private plan, you can keep it. If my husband loses his job, we'll have to give up our own private plan and will need to go look to the public plans to help us.
... Read More
Most of the people worried about reform already have private plans that they are happy with. So, I don't reckon there's much to worry about for other Cushies.

Just remember, no one is immune to losing their job. One must prepare as to what they're going to do thereafter. What will you do... with your pre-existing conditions? Makes you think, doesn't it?

~~~~~

Definately a well thought out response. My only question about that is, if your husband lost his job, wouldn't you be able to go onto a state insurance plan as the system is now?

I know when my husband was starting his business and we made very little money we went onto state medical insurance in CT very easily. I just worry about gov. run health care that might be run like medicare is.

~~~~~

Yes, I can get a state insurance plan, but it will be worse care and more inconvenient compared to what Obama has in store if I am understanding things correctly. And still, between my husband's unemployment insurance and my living off the state, we're STILL grabbing from the pot of other people's tax dollars. Actually, whatever we would decide to do from that time on would be a pulling from the people's pot of money.

Medicare is what all the elderly are fighting so hard to keep, so it can't be that bad. What's cool is that they can get a little private plan to compliment it.

But any public option is always going to stink compared to any private plan any day of the week. Right now state insurance as it is.... I wouldn't be able to take most of the meds I'm taking now. I know this because even with my PPO private plan, we are always having to fight our insurance co's for approvals - even for lousy refills. Maybe I am wrong, but the public option the Dems are fighting for has got to be better than the program that exists now for the indigents. ... Read More

It's scary right now for all of us on both sides of this debate. I hope something works out that will be some sort of a compromise so that at least most people will be happy.

~~~~~

The Govt REGULATIONS created HMOs, COBRA, inability to buy insurance across state lines, lack of competition, ineligibility for pre-existing conditions, and yes, even loss of insurance when not employed. You can thank the GOVT for all of that. They created the problems with healthcare insurance.

De-Regulation of healthcare and insurance is the ... Read Moreonly way to improve insurance options and patient care. Govt takeover of medicine DESTROYS medical care. There will be no competition, no advancement in treatment options, no advancement in medical technology, nor options for treatment. You can forget about a cure for anything, let alone cancer.

I am sorry you believe that everyone else should have to pay for YOUR care (these are TAX dollars, the Govt has NO OTHER MONEY.) Taxes will be raised on EVERYONE and the middle class will suffer the greatest tax burden so those of you who choose not to pay for your own insurance or who cannot receive insurance due to GOVT REGULATIONS, will be covered. This is WRONG and COMPLETELY UNCONSTITUTIONAL and IMMORAL, not to mention, COMPLETELY UN-AMERICAN.