Archive for July, 2009

July 30th, 2009

Have you joined a Group?

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Our goal here at WEGO Health is to be the home of Health Activists: a place for those passionate members of the online health community, who love to help others with information, resources and support. Many of our members tell us they are looking to connect with other Health Activists who are passionate …Read More

July 29th, 2009

We Love: Frozen Pea Fund

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This week on WEGO Health Loves: Frozen Pea FundEver wonder if Twitter can really be used to start a movement? Well it can.Just ask Susan Reynolds. Self dubbed the “Nana” of Twitter, Susan is a breast cancer survivor and catalyst for the Frozen Pea Fund.Frozen Pea Fund isn’t just another fundraising campaign, it’s a story of support and the …Read More

July 17th, 2009

Alzheimer’s News is Good News

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In the last few weeks a handful of really interesting Alzheimer’s studies have emerged. These studies prove that, though there is still a long way to go in the treatment and prevention of this devastating disease, there are a lot of great things happening in the research community. Every advancement points in the right direction. …Read More

July 14th, 2009

Seeking Migraine Webinar Topic Ideas

by admin

As you may know, WEGO Health recently began a series of webinars on Twitter (Twitter Fundamentals for Health Activists and Twitter Power Tools for Health Activists). We’ve heard from all of you that you’d also be interested in webinars about specific health topics.

We’re currently working to put together a webinar about migraines, with a physician presenting information and hopefully some time for Q&A with the physician as well.

I’m wondering what topics would be interesting to all of our Migraineurs out there. We’d like to create a presentation that would be engaging and relevant for Migraine Health Activists.

Are there specific topics around Migraine that you’d like to learn more about? What would be a “can’t miss it” presentation for you? Let us know by …Read More

July 13th, 2009

Spotlight: Endochick

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Spotlight: Endochick
Website: Endometriosis: The Silent Life Sentence

Twitter: @Endochick
Blogging since
: March 2007
Occupation
: Freelance Writer, Freelance Correspondent for a local paper, an Aspiring Novelist, and a Part-Time Head Teacher at a Day Care. Above all, I’m also a mommy to two wonderful little kiddies

What made me start blogging?
I began blogging mainly as a cathartic exercise. I had no one in my community to talk to who had endometriosis and who could identify with what I was going through—and I needed an outlet to “unload.” My mother had had endometriosis, but her hysterectomy at 28 left her disconnected and unable to help me. My husband had been through so much with me health-wise and I didn’t want to drag him through yet another emotional medical journey.

So as a writer and someone who enjoys journaling to work through her troubles, I opened a blogger.com blog. I began cataloging my experience of being diagnosed with endometriosis as well as a very frightening mammogram. Eventually, I moved my blog over to wordpress.com and began getting a plethora of responses from women just like me. These women were my age, younger, even older! I couldn’t believe it–I wasn’t alone! They were thanking me for being so honest and raw with my language and for really capturing what it feels like to have endometriosis. And I realized my blogging wasn’t just for me anymore, it was for all of us “endo” girls. My blogging became a mission to help spread endometriosis awareness and education, as well as still being an open book into my life as an endometriosis patient. I do this with the hope that other women who have the disease, or suspect they may have it, will not have to feel alone as I once felt.

What motivates you in your writing?
My pain motivates me. It reminds me that life is short and that no amount of pain is going to stop me from living every last minute of it. I often write through the pain.
My readers also motivate me. Without them I would be writing into an empty void with no one to bounce my ideas off of. Their comments are often inspirational and I enjoy them so much!

Who do you admire in the Endometriosis community?
I really admire Jeanne from +/2+/ (formerly Jeanne’s Endo Blog). She’s an inspiration for women with endometriosis and other chronic illnesses. During the month of March (Endometriosis Awareness Month), Jeanne created the hash tag #endo for Twitter and had it placed in the Twitter Hash Tag dictionary. It’s use in now widespread on the social networking platform. Also during this month, I instituted the phrase for use on endometriosis blogs and Twitter: “March Blogging Madness for Endometriosis Awareness.” And Jeanne was instrumental in helping to circulate this catchphrase. Jeanne is always willing to come to the aid of a friend, endometriosis sufferer or not.

What are the most common questions people ask you – and what do you tell them?
I get asked about my experience a lot and I often tell them my personal account—how I was diagnosed, etc. But I reiterate to each individual that the time it takes to be diagnosed is different for everyone. The only way for endometriosis to be diagnosed definitively is by laparoscopy. This diagnosis takes, on average, 9.9 years. During this time, doctors may “suspect” that you have it, which was my case for years. They can “suspect” and treat you to an extent all they want. But to be diagnosed one way or the other is important.

I’m also asked how I deal with co-workers, family, friends, and people who just don’t understand the pain I’m going through with my endometriosis. This is a difficult thing to deal with—people who don’t “get it.” It would be easier if we had broken bones, or even cancer. People could see our casts or our hair falling out from the chemo—and they would sympathize with our pain. But when the pain is so internal, so deeply hidden in our wombs with no external reference point for others to identify with, it makes it almost impossible for them to understand.

My answer is—you can’t make them understand. They will never understand because they can never walk in our shoes. But take two people with endometriosis—they can look at each other and they just know. They know each other’s pain and they don’t even have to describe it. They know the cramps, the bleeding, the cysts, the adhesions, and the endless pain. They just know. And, while you can’t make other people “understand,” you can educate them.

The more people we educate about endometriosis—in the work place or in the world—the more we will be taken seriously by our co-workers and loved ones. Endometriosis isn’t simply a “bad period,” as non-sufferers believe. And we need to get that word out. We need to band together, with those who understand our pain, to get that accomplished. We are not a minority; after all, according to the Ohio State University Medical Center, endometriosis is more common than both AIDS and cancer. That makes endometriosis patients a majority, a strong majority of 89 million women worldwide. When we combine, we can get our voices heard.

What would you most want to say about your condition to someone who doesn’t have it?
We are not drug-seekers—we are actually in pain. We are not lazy—we are prone to sitting on the couch in a puddle of tears because our insides are bleeding. We don’t need your pity—we need your honest, compassionate support. We don’t need or expect that you will understand what we are going through. We need you to understand that you never will. We just need you to acknowledge that the pain isn’t a specter, an imagined thing come to haunt us, or something we created in our minds. We need you to acknowledge that we are not “making the pain up,” not receding into tiny balls of tortured women every month in a desperate cry for attention. We just need you to acknowledge that our pain is real—even if you can’t feel it or see it.

What is your favorite health-related resource?That’s a tough one! I have so many health-related sources I use. I would point readers to …Read More

July 9th, 2009

Spotlight Interview with Dawn Stacey from About.com: Contraception

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I would love to see everyone make safe sex choices and reduce the number of unplanned pregnancies and abortions. And I love educating people about their birth control choices and having seen firsthand how these decisions affect all of our lives.

Where to find her: About.com: Contraception since 2007 and on Twitter @Dawn_Stacey
Occupation: Writer, Advocate, Professor, Stay-at-Home Mommy

How did you first become interested in contraception, family planning, and other women’s health issues?
While pursing my Masters degree, I did an internship at Planned Parenthood that later turned into a full-time job. Through +/2+/, I had the amazing chance to experience real-life struggles and joys in the area of reproductive health. I witnessed both births and abortions—so I can truly describe what to really expect during these times. This introduced me to the world of activism and how important it is to advocate for women’s health issues. Ever since, my passion for contraception and family planning has only grown.

What motivates you in your writing?
I believe that all individuals have the right to manage their fertility and should have access to accurate birth control information. I am passionate about contraception and its importance. My advocacy is what truly motivates me.

I would love to see everyone make safe sex choices and reduce the number of unplanned pregnancies and abortions. And I love educating people about their birth control choices and having seen firsthand how these decisions affect all of our lives.

Who do you admire in the women’s health community?
Though she is no longer around, +/3+/, in my opinion, is the epitome of reproductive health advocacy. I admire all the work that she did to pave the way to where we are today.

What are the biggest trends you see around birth control?
It seems that there has been a renewed interest in IUD use (either the Mirena IUD or the ParaGard IUD). This makes me happy since IUDs have gotten a bad rap in the past. Also, a lot of people as me about extended-cycle birth control pills. These are pills that allow a woman to manage how often she has her period. For example, Lybrel is a pill that is taken every day, so a woman can have no periods. And Seasonique is designed so that a woman only has a 4 periods a year. These are great options for women who have terrible symptoms with their periods. Plan B, emergency contraception, is also a very popular trend right now.

What are the first three tips you tell people who are trying to select a new form of birth control?
People need to know that having sex is about making choices. We choose: our partners, when we’re ready to have sex, when to wait, and what we feel comfortable doing. Now we can finally choose to have sex in the safest way.

When choosing a method, people should factor in a few things: how effective they want the method to be, how convenient, and what type of method would fit into their lifestyle best so that they will be more likely to use it. Also, are they even a candidate for this method? What are the health risks?

What is your favorite health-related website?
That’s easy… mine! One thing that I love about my contraception site is that I created the whole thing—it was my concept. When I began writing for About.com in 2007, there was no contraception site. I was hired to build it from the ground up, so I have personally written every article and blog entry found there.

All my articles are full of accurate information and licensed medical doctors medically review them. So people can know that, without a doubt, the information I am providing is correct. (So much online info about birth control is not correct).

I also try to write in a way that people can understand since these topics can be fairly complex. My website is a wonderful platform to share my knowledge and my understanding of the personal issues that surround birth control use.

What is your favorite health-related book?
I have two – “+/4+/: The Definitive Guide to Natural Birth Control, Pregnancy Achievement, and Reproductive Health” by Toni Weschler and “+/5+/” by Judy Norsigian

Is your writing/project therapeutic?Very much so. It is wonderful to know that I am helping people make very important decisions. After all, look at what is at stake if people make the wrong decisions about their contraception—pregnancy. The topics that I write about are really life-altering.Words cannot …Read More

July 8th, 2009

We Love: Running a hospital

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This week on WEGO Health Loves: Running a hospitalDon’t worry, we’re not looking to get in to the hospital business, we just really enjoy reading Paul Levy’s blog, Running a hospital.Levy is the President and CEO of Boston’s renowned Beth Israel Deaconess Medical Center. His blog offers a surprisingly transparent look into the inner workings of a large teaching hospital. He shares everything from …Read More

July 7th, 2009

Spotlight Interview with Gabrielle Peterson (aka Peanut Free Mama)

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/+0/+Where to find her: Peanut Free MamaI’ve been blogging since 2002. I started a personal blog in 2002 at Gab’s House o’ Sass, then I started a blog for my daughter in 2004 which evolved into my current blog (where I devote most of my writing).

Occupation: I manage the marketing department of a scientific publisher in Northern California.
Why “Peanut Fee Mama”?When my daughter was diagnosed with a peanut allergy, I really felt that I absolutely had to live …Read More

July 1st, 2009

We Love Twitter

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This Week on WEGO Health Loves: TwitterNo really, we do. Seems like everyone is talking about Twitter these days and everyone has an opinion about how best to use it. Though there is one thing we really love about Twitter – the people!We’ve met some many wonderful health folks, including:

And those are just a few! Please visit our growing community…Read More