The WELLalarm Blog

WELLtip: Making an Informed Choice About Medication

Having a chronic illness means making some very serious decisions about what medication I take. I have had awful side effects from numerous medications, including one I still take out of necessity, and I have had to learn to deal with the side effects. This is why I think it is so important for people to make an informed decision before taking a medication. Do not simply take a medication just it is offered!

That said, another person's experience (especially with side effects) may not be reflective of what yours will be. There are a myriad of things that influence side effects, including your genetic make-up. I have a list factors I consider when I evaluate a medication. I urge anyone who has to choose a medication to think about the following:

1. Doctor’s advice--I always have an honest conversion with my doctor.
2. Potential side effects and warnings--you should always research these, but keep in mind that they reflect all possible outcomes and often are only seen in a very small portion of the population.
3. Cost/benefit analysis based on your individual condition.

There are no guarantees when taking medications--we all know this! But it is essential to make as well-informed a choice as possible. You have that power in your hands.

Entreprenuership: It Can Dramatically Reduce the Cost of Chronic Illness to Tax Payers

I strongly believe that entrepreneurship is a viable and dramatically under utilized career option for people with chronic illnesses. It's critical during this time of economic crisis when the US health care system is spiraling out of control and managing the cost of chronic illness is one of our major concerns as a country at large that we look out of the box for solutions. I am of the believe that entrepreneurship is part of the solution we desperately need to help to decrease the cost to our society of chronic illness and in developing a societal safety net for those with chronic illnesses. Currently, vast numbers of Americans who live with a chronic illness (Remember, 1/3 of the US population has a chronic illness folks and this is number is only going to increase in the next decade...) rely on some for of government assistance including disability or are dramatically under employed because of the need to access health insurance from an employer pool because they are unable to thrive as part of the "traditional workforce" and at the same time take the appropriate steps to take care of themselves. Learn how we can easily fix this and dramatically REDUCE the cost of chronic illness to tax payers in my next few vlog posts!

Entrepreneurship - More Than A Viable Option for People with Chronic Illnesses from Stephanie Cion on Vimeo.

Bram Cohen

I've had this Business Week article about a programmer with Asperger's Disorder who founded a company bookmarked for a couple of weeks now.

Once Bram Cohen realized he has Asperger's Disorder (he has not been formally diagnosed) he became much more aware of how he interacts with other people and taught himself how to behave as if he felt empathy. Soon afterward he founded BitTorrent with Ashwin Navin--and found himself a boss with some serious management issues. It's fascinating to read.

"Stayin' Alive" with CPR

I was tickled by this news article: a study at the University of Illinois Medical School found that doctors and students who performed CPR while listening to "Stayin' Alive" came close to doing the ideal 100 compressions per minute. As it turns out, the famous song from the 1977 move "Saturday Night Fever" has 103 beats per minute.

Who knew the Bee Gees would ever transcend the chest hair and falsetto voices voices in such a noble manner? I love it! Maybe I should create a WELLcharm with a built-in "Stayin' Alive" MP3 player.  (Um, don't hold your breath...)

Catch a demonstration here on CNN.

Friday Links: Patient Humor

The WELLalarm Blog ran a little heavy this week, covering the elections and the FDA. Since it's Friday I'd like to lighten up a little!

Having chronic illness is no laughing matter; I should know. But I think we all know how a good laugh can help the medicine go down.

Snappy comebacks and a cat who needs her meds on  The Professional Patient.

The Sick Humor Series from But You Don't Look Sick.

I love this It's The Prednisone t-shirt by Toby Stark. You can get one of your own here.

Kerry Morrone Sparling shows us a cute cartoon about the Diabetes Police on Six Until Me. Did you know her glucose meter talks to her? Lucky. Here's a sweet comic strip about her life. Anyone else have some great humor links that they love?

Blog Review: Special Needs Truth 08

After I posted on Sarah Palin's pledge to be a friend to families with disabled children Monday I was thrilled to hear from a fellow blogger who has been following this issue closely.

Mark writes Special Needs Truth 08, a blog that focuses on the presidential candidates' respective positions and records on children with disabilities. Mark is the father of a four-year-old daughter with autism, so this issue is personal for him. After hearing Palin's speech Mark "wondered what the McCain-Palin plan was for children with special needs." The blog compiles links to records, letters, and articles that attempt to answer that question.

So what has Mark found? So far, he is not impressed with McCain and Palin. As governor Palin line-item-vetoed six appropriations for community disability services or for accessibility modifications to public accommodations. She also vetoed a bill passed by the Alaska Legislature increasing funding for the Special Olympics. (There's more... much more on Palin.) As for McCain, he has yet to release a position statement on disabilities, though he has a statement on autism. I find the many personal statements of parents with disabled children particularly effective.

Mark's focus is primarily on Palin and McCain. He does include a link to Obama's plan for people with disabilities and another statement on autism. I wonder if the blog would be stronger if we had more information on Obama and Biden's records on similar issues.

Still, Special Needs Truth 08 seems like an excellent resource for parents of children with disabilities; I forwarded it to my mother as soon as I found it!

P.S. These are two the most helpful links I found on Mark's blog: The Association of Americans with Disabilities offers a comparison of Obama and McCain.  

FDA to post quarterly reports on potential safety issues

Speaking of drug safety, the FDA recently announced that it will be posting quarterly reports on potential safety issues. The lists will consist of drugs that are under evaluation for potential safety issues. You can find the current FDA report here.

You want to know what's on that list, right? Believe me, as a patient who depends on her share of pharmaceuticals I want to be as informed as possible, too! But before you click on that link, there are a few caveats:

First, these are not drugs that the FDA has concluded are dangerous; rather, these are drugs that the FDA has identified as having a potential safety issue, derived from the AERS (Adverse Event Reporting System) database. In some cases, it may be a matter of changing the indications on a label.

Second, Janet Woodcock, M.D., director of FDA's Center for Drug Evaluation and Research urges you to keep taking your medication even if you see it on the list. "My message to patients is this: Don't stop taking your medicine. If your doctor has prescribed a drug that appears on this list, you should continue taking it unless your doctor advises you differently."

I would add that if you see your medication on the list, you should also have a conversation with your doctor about the drug in question!

One more thing, the lists will not be cumulative. Read the FDA's fact sheet on the quarterly reports here.

Guest Post by Dr. Michael Rushnak: Thoughts on Drug Safety

We are thrilled to introduce today's guest blogger, Dr. Michael Rushnak. Dr. Rushnak has over 30 years experience in the medical field, first as a physician and then working in the pharmaceutical industry and consulting for managed care physicians. Dr. Rushnak is also a writer; his medical thriller novel Terminal Neglect debuted just this month! Today he provides us with his thoughts on using medications in a safer manner. Keep in mind: patients should always check with their own physician before acting on any information they read. 

The best way for chronically ill patients to ensure that their prescriptions are as safe as possible is to be well informed on the latest scientific information.

1.  First and foremost, chronically ill patients must keep their primary physician appraised of all the medications that may be prescribed by various specialists.  Their primary doctor knows the unique clinical facts related to the patient such as drug-drug interactions as well as abnormal liver function or renal function that must be taken into account to minimize the potential for an unsafe clinical scenario. 

2. Patients should always read all the prescribing information that comes with all prescriptions.  Go directly to the pharmaceutical company's webpage to find patient and physician language information on the drug (you can usually find the pharmaceutical company by typing the name of the drug plus "dot com" into the address bar).  Use only reliable online sources of information such as FDA.org. Patients should talk to their physician about previously reported side effects. 

3. Patients should keep a diary of any new symptom that might develop during the taking of the medication(s) and report them promptly to a physician. 

4. It is a generally good practice for a patient to ask their physician if their medication is a relatively new product and whether time-tested, safer alternative prescription drugs could be considered for their chronic condition.

5. Lastly, it is critical for patients to remember that FDA approval of medications means that they are effective for their condition and that the benefits outweigh the risks.  However, an FDA approval based on relatively small numbers of patients taking the drug in clinical trials does not mean that the drug is completely harmless for all patients.

Great Gifts for Adults with a Chronic Illness

Yesterday I posted on gifts for children with a peanut allergy. Today I am introducing you to my gift guide for adults with a chronic illness. I've actually tried many of these out myself!

Om Nectar Douceur organic body wash, made with aloe vera and raw shea butter, smells and works like a dream. Also in Valencia orange and Provence lavender.

Icy Bag insulated and chilled accessory bag is a stylish and discreet way to take your heat-sensitive medications and other health items with you wherever you go.

Xocai all-natural chocolate treats are made from unheated chocolate, which retains 100% of its antioxidant and nutritional value. It delivers the full antioxidant capacity of dark chocolate without the fat, wax, milk, fillers, preservatives and high sugar content normally associated with almost all store-bought chocolate.

The Comfort-U Body Pillow is sooooo comfortable.

I've posted before about how much knitting has helped me. I love these knitting kits by Kpixie.

This Conair Sound Therapy device really soothes me.

Kindle is great for all those doctor waiting rooms. It's easy to adjust the font size and and light as a feather in your bag. Don't forget a cover!

Speaking of bags, I like these chic Casauri laptop cases, totes, and overnight bags.

This is a great light for a hospital stay or for sleepless nights.

Never underestimate the power of a furry friend! I love bringing my cat with me in this Sleepypod mobile pet bed.

This Apple iPod touch is great. I can't stress enough the power of the tunes! Music and instant TV shows are essential for long nights, so it's a good idea to add iTunes credits.

Along those lines, there's also Tivo. I will admit that during my illness i developed a slight (maybe not so slight) soap opera addiction... and knew everything going on on pretty much any show!

Audio books like Recorded Books are fabulous. You would shocked how engaging a book on tape (or mp3) can be -- especially if the person's medications mess with their vision.

These weekly planners by Sarah Pinto are cute -- and Sarah donates a portion of proceeds to the Pediatric Cardiology Center at California Pacific Medical Center.

           

WELLalarm has launched!

I am tremendously excited to announce the Beta launch of WELLalarm™! The new website is up and running and our electronic doors are open for business.* This is the culmination of a year of hard work and fine tuning not just by me but also by my colleagues. I'm proud of what we have created and I know it will just keep getting better.

WELLalarm™ is a web-based service that allows clients to securely store their health records and access them 24/7 from anywhere in the world.

In an emergency, WELLalarm’s™ patent pending-technology enables life-saving medical information such as blood type, medications, allergies and emergency contact information to be accessed in seconds by concerned bystanders or emergency medical officials by phone, text, url or mobile device.

Our product line includes our medical alert jewelry line, WELLcharms™ and WELLtags™, sophisticated medical ID jewelry that allows the wearer to identify their illness or allergy and link to their WELLalarm™ account.

In the coming weeks and months we will be launching many fabulous new features that take WELLalarm  far beyond its  core  emergency capabilities. Through your WELLalarm account email, voice, and text alerts, you will be able to store and interact with your health records, appointment schedules, emergency contact information and more -- in multiple languages!

Like many great ideas, this was born out of necessity. Three years ago, shortly after being diagnosed with a rare neurological disorder which required  intensive infusions treatments and chemotherapy, I was urged to start wearing a medical alert bracelet in case of emergency. However,  I was dismayed to see how unattractive the medical alert jewelry was and how inefficient they were in conveying the necessary information in an emergency I also realized how difficult it can be to manage your medical records, juggle medications, and keep track of appointments. Seriously, it is a full-time job unto itself.

What if someone started making stylish medical alert jewelry? What if someone made better use of the latest communication technology? Why shouldn't that person be me? After all, given my background in healthcare, mobile tech and venture shouldn’t it be me???

Dealing with this new chronic illness was enough of a challenge, but starting a new company gave me a reason to fight harder. As a former Aetna executive I was uniquely qualified to start a company like this. And now here we are! With the help of my able and talented team WELLalarm™ is now a reality.

By the way, I have to mention that the WELLalarm™ team is comprised almost entirely of women. Isn't that fabulous?

*Please note you need a beta code to access the account portion of the website or to checkout in the e-store.  You can sign up to be part of the beta at WELLalarm.com. We will be sending out invites to participate in the beta on a first come, first serve basis from this list in the coming weeks! We are really excited to get your thoughts and feedback so please do not hesitate to sign-up!