BlogHer - Is there a doctor in the house? Internet tools for your health - Comments

Learning from others

LynnOoi — Wed, 01 Aug 2007 14:44:55 -0500

I enjoyed reading your post and I want to tell you about StriveWell

It's a healthcare social network that I co-founded to provide a central location to connect people with similar health concerns together, so that they can share their experience through blogs, links, and daily news. (Forums coming soon)

We are just starting out, so I am trying to get in touch with people who see value in sharing personal experiences, who are interested to contribute to a particular group and get the community started.

Lynn Ooi
www.strivewell.com

I am so incredibly grateful

mia3mom — Mon, 21 Aug 2006 07:07:56 -0500

I am so incredibly grateful for the internet. It has helped our family with our myriad of odd medical conditions (I even made a primer for my blog readers).

Once you are diagnosed with something, having all these resources is immensely helpful. I didn't find it particularly helpful when I was awaiting diagnosis, because while I had an inkling of what I was dealing with, I don't have the medical skills to sift through the possible dx to get the correct one.

But it is so wonderful to find a community of other people with the same issues and find ways of managing together. Many of my best celiac & dairy-free recipes are from friends who travelled the road before me. And the people who have given me the most help since I was dx with fibromyalgia have been online.

It's a mixed bag, but I'm so grateful for the strength in numbers. I just try to stay away from the pre-dx hysteria for myself.

Rachel
A Gaggle of Girls
Rachel's Recipe Box

Hypochondriacs becareful

prlinkbiz — Sun, 20 Aug 2006 13:02:21 -0500

Whil e agree that the internet is a great resource, and especially a great way to connect with other people who may be going through the same life issues, it can be a dangerous place for a hypochondriac! I am not one, but on a few occasions, I have been sure something was horribly wrong with me, done some research on the internet which confirmed it and raced off to the doctor with my new found info in hand. Doctors I think respect the internet- but dislike having patients come to them with a self diagnosed internet disease! lol

"I believe the key is for women to not set any limits." No Limits Ladies.

Is there a fellow patient or two in the house?

AmandaM — Sun, 20 Aug 2006 12:52:40 -0500

Hi Denise,

Nice article! Personally, I really like emedicine and pubmed.

And the best for me, for rare pediatric diseases at least, is getting information from families who have already walked the path of that rare diagnosis. For rare diseases such as my niece's chronic liver disease, there actually isn't enough patient-friendly info. online. And there are some issues that don't really come up in the standard health websites - food allergies following pediatric liver transplants, GI bleeds catching families by surprise pre-transplant, school and IEP plans, how to get travel insurance - all sorts of quality of life issues that start to pop up as commonalities once we begin comparing what it is to live with rare and chronic pediatric liver diseases.

Blogher says websites are conversations, and for me, health empowerment around rare diseases is most definitely all about conversations and shared stories. Online forums are perfect for that! The internet most definitely is a wonderful thing when parents from all over the world can compare notes with each other on their child's treatment.

Just knowing that somebody else walks in your shoes - it helps. And yes, that is definitely empowering. Getting googled out and scared, not so much. Asking someone who might know about their experience? Having a chance to rant when your child's docs aren't listening? That helps. Not having to learn how to find info. on a disease from scratch? Learning the history of a disease? That helps too.

- Amanda M
Imagine Bright Futures
Forum Admin Team, Liver Families , an international online forum for families whose lives have been touched by pediatric liver disease and transplant.

Is there a doctor in the house? Internet tools for your health

Denise — Sun, 20 Aug 2006 10:30:08 -0500

The internet is a wonderful thing. You can become a lay-expert in virtually any topic you like. Grab a search engine and start studying. Grab a blog and start publishing. On the internet, you can find the information that can change your life. You can also find information that can help you take control of your own health.

You can use good old Google to search a wide range of sites or select suggestions from Google Health. You can visit MSN Health, Yahoo Health and Netscape Health. If you prefer, you can visit Healthline, WebMD and Medscape or the Mayo Clinic, IntelliHealth or Family Doctor. There's the NIH and the CDC and the FDA and Medline, not to mention NCCAM, the ADA, and the USDA.

Blogs dedicated to providing health news & information are created almost daily. There's Aphrodite: Women's Health News & Research, Women's Health News, Your Child's Health, Health'Sass and Medblog. We've got Chronic Babe, The Diabetes Blog, and The Cancer Blog. I could go on and on and on but that's the point, so can you. If you want health information, you can get it. If you need health information, it is there for you. Information is power.

In the summer of 1990, Michelle was 3 months old and she got very, very sick. We took her to the emergency room at the Charleston Navy Hospital where she was admitted for testing. Hours later, they wanted to do a spinal tap to check for meningitis, I let them. I had absolutely no idea whether it was necessary. I had absolutely no way to find information about what might be happening or what they might find. I basically handed my infant over to the experts and sat quietly by.

16 years later I still wonder whether I would let them do the spinal tap if it had happened today. With all of the health information available to me now through my friendly search engine, would I have decided the spinal tap wasn't necessary or was too risky? I'm sure I would have felt less helpless and more in control if I had been able to access health information online. I'm sure I would have felt less fearful and more in control if I could have done a quick search of my favorite health information sites and compiled a list of questions to ask, both before and after the procedure.

On the otherhand, it's so easy to go online when we're feeling like death warmed over and decide we've got a year to live and we're going to die a horrible death. It's also much easier to second-guess our physicians and our treatment plans. There was a time when we could walk out of a doctor's office with an RX and believe those magic pills would work. It's almost impossible to be scheduled for gall bladder removal and believe that this is going to take away our pain, we've read the stories and articles online, we know better.

When you go to the doctor, do you look up your symptoms before your appointment? Do you walk in with a list of questions, created from your own internet research? Do you walk out of the appointment and head to your favorite search engine or health information site and begin second-guessing? Is health knowledge empowering or is it getting in the way?

~~Denise
Daily Dose of Denise and Fast Times @ Homeschool High

Image Credit: UUHSC