Twitter Fundamentals for Health Activists

In our ongoing effort to empower Health Activists, WEGO Health will be hosting “Twitter Fundamentals for Health Activists”; a webinar event on Thursday, April 30th at 12PM Eastern Time.

Do you have a Twitter account, but wonder "now what"? Well this is the webinar for you. Join us as we share tips and tricks about how to make Twitter work for you as a Health Activist.

This one hour, online event with help you to gain insight into how to better use Twitter as a means for building community, advocating and promoting awareness of health conditions and issues.

To join, RSVP now at: https://www1.gotomeeting.com/register/766939376.

Fertility Spotlight: Trish

Spotlight: Trish
Websites: Fertile Hope and Remarkable Robbie
Blogging for: 2 + years
Occupation: Network support, but currently a stay-at-home mom for the next year
Favorite food: "I could eat Mexican food everyday!"


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"Stick with it until you've exhausted your options. And if your journey doesn't end with a biological child, don't feel defeated. You're a solider in the battle. You matter."

What motivated you to start blogging about your fertility experiences?
I've always been one to write through the pain. As a teenager, I wrote angsty (awful!) poetry. Then as an adult, I tinkered with a journal here and there but nothing ever really stuck.

At age 30, I spent over a year in the process of trying to have a baby and also experienced my first miscarriage. I was hurting and felt like I really had nowhere to go with the dark thoughts that filled my head. My husband didn't seem nearly as troubled by the jealousy and grief as I was. I needed a place to get it out.

When I started, I didn’t expect anyone to read. For a while, I didn't tell anyone I knew (even online friends) about the blog. It was just for me. That changed later – but in the beginning, it was just a much-needed emotional release.

What was your motivation for getting and remaining involved with the online fertility community?
Getting involved was a gradual process. I made an online friend (on a message board that had nothing to do with babies or even health) who had been through some infertility testing and treatment and suffered a miscarriage. I'd gotten to know a little about fertility issues during her trials. Naturally, when my husband and I started trying to conceive, I asked her questions. As it became more apparent that we were having trouble, she referred me to a few communities – which became nothing short of an obsession.

After that, staying involved wasn’t a choice. Even after my son was born, I'd simply made too many friends to leave. Plus, my son was born extremely premature and those community members had rallied their support in spite of their own issues with getting and staying pregnant. They weren't just a "community" anymore – they were my friends.

What additional encouragement and/or advice would you offer to those experiencing infertility?
I try to not offer too much advice because the usual "advice" is often nonsense (the blogging community often calls it "assvice" because it's useless). During our struggles, I thought if I heard "just relax" one more time, I might turn to homicide.

As for encouragement, all I can offer is a view from the other side. It IS worth it. Our path was easier than some and harder than others. And our foray into parenthood hasn't been an easy one by any means. (Our son was born 14 weeks early and spent his first 3 months of life in a hospital. He still suffers some medical issues.) But I can say with confidence that it is worth it.

I liked to think of infertility as the enemy – I personified it and refused to let it win. Sometimes that meant that I couldn't take a break cycle when we probably needed one, but it's also what kept me from giving up.

Stick with it until you've exhausted your options. And if your journey doesn't end with a biological child, don't feel defeated. You're a solider in the battle. You matter.

What has been the most rewarding part of it all?
That one is easy – my son, Robbie.

Learn more about Trish

Who inspires you? Let us know who we should feature in our next Spotlight interview. Write us at community@wegohealth.com.

How do you respond to health advice?

I recently came across Sara Nash's blog on MyRACentral and wanted to share a post I just loved: Bugged.

The money quote, for me, is: "Sorry, but when did proselytizing one’s unsolicited cure-all become OK?"

Sara gets at something we all deal with as Health Activists and members of online health communities--there are always people out there trying to push their cure.

Sometimes this happens in obvious ways, a snake-oil salesman (or woman) trying to sell their panacea. Sometimes it comes from the people we least expect--well meaning friends or family members, convinced if we would just give X (yoga, vitamins, the newest drug, you name it) a try, then our health problems could finally be resolved.

I tend to think that most of the time, all these people mean well. They've found something that has worked for them, and they want to spread the word; or they read something somewhere and want to make sure that we know about it too. As annoying as that can be, it's still a pretty well-intentioned gesture.

What I think gets to be so hard about this unsolicited advice (and I think Sara really hits the nail on the head in her article) is that we, as patients, are somehow, subtly, responsible for whatever health conditions we're living with. Whether it's Rheumatoid Arthritis, as Sara discusses in her article, fertility issues, migraines, mental health, food allergies, or another health condition, even the most well-intentioned advice can imply the patient is to blame. I think this only adds to the unnecessary shame that many people feel over their health issues and can actually do more harm than good.

Thinking about all of this leads me to two questions:

How do we, as Health Activists, encourage people to seek out the care they need, without reinforcing any ides of blame or shame?

How do we, as Health Activists, respond to unsolicited advice, whether it's directed at us, or towards fellow members of our online communities?

My personal take is that this sort of advice is most appropriately shared when it's been asked for. I'm generally content to ignore any unsolicited health advice that's thrown my way, but it's also important to me that others feel confident they can participate without being bombarded with advice they may not need or want.

What have your experiences been? How do you answer these questions?

Spotlight Interview: Ruth Smith

About Ruth:  I spend most of my time on BestAllergySites.com, but contribute when I can to my blog on sustainable living, crafting, and organic gardening at GreenPeony.com. In a past life I was a Graphic Designer, now I'm a writer, artist, life learner, and most of all mother of two-which we all know is more than a full time job in and of itself. I'm also a bit of a serial volunteer. It's important to me to be a part of and give back to my community. Aside for working in my children's classrooms, I also work on annual PTO events, I'm on the board of our town garden club and am chairing the plant sale this year, I am a volunteer team leader for a local Asthma Allergy Foundation of America support group, and I'm coaching t-ball for the first time.

I'm a firm "pay it forward" believer. If I can make a difference for just one person or family then it is completely worth it for me.

How were you introduced to the world of allergies?

From birth my oldest son had eczema and occasional cases of mysterious hives. Just before age 2 he touched a cutting board I had chopped walnuts on and rubbed his eyes. He immediately started sneezing and coughing up mucus. In a matter of moments his eyes and face turned red with hives and began to swell. He was later diagnosed with life threatening allergies to peanuts, tree nuts, egg, sesame, and soy.

What made you decide to start Best Allergy Sites?

When my son received his allergy diagnosis, my husband and I were given an EpiPen prescription and then sent on our way. We didn't know who to turn to or where to look for support and advice. Fast forward several years and this same situation is still happening every day.

There are so many wonderful allergy sites and blogs and not a single free and easy to use directory to find them. It seemed to me that the allergy world needed a central resource where people could go and find allergy information, education, support, recipes, advice, product information-anything and everything one might need to manage living with allergies. Best Allergy Sites is the resource I wish I had when my son was diagnosed. It would have saved us a lot of effort, time, and frustration.

Does Best Allergy Sites focus exclusively on food allergies, or can site about seasonal or nasal allergies submit information too? 

The mission of Best Allergy Sites is to bring all of the best allergy information into a one central resource or directory. Any allergy related business, blog, or site can submit for consideration; however we personally review and enter by hand each and every submission. If a site or blog appears to offer dangerous advice or information or doesn't seem genuine-it doesn't get listed. That very rarely happens though. Most submitters to Best Allergy Sites are living with allergies in some way, are allergy advocates, and really care about the allergy community.

What's the hardest part about dealing with allergies?

Entering school. I mistakenly thought that all schools were aware and on top of allergy concerns. We moved to a specific town because of the school's overall reputation but neglected to ask what their policy was regarding food allergies. We quickly found out that the district had no allergy policy even though the Massachusetts Department of Education had published a brochure titled "Managing Life Threatening Food Allergies in Schools" in 2002. While the state currently has no law requiring allergy policies or protocols, the brochure strongly suggests all Massachusetts schools draft and implement them. I'm pleased to say that after a lot of personal work and advocating, our district implemented its first set of allergy policies and protocols this year.

What has surprised you the most?

My son's maturity and his resilience. He had to learn about death and dying long before any child should have to. There was a time (and there still are times) when he is consistently excluded from activities, play dates, and birthday parties. We live in a very pro-food country. It's not uncommon for the school cafeteria to serve a treat on holidays to all students that my son cannot have. It's pretty hard on a young child to watch 100 kids eat a special Halloween or Christmas cookie. It's even harder when a friend brings cupcakes to school to celebrate a birthday and leaves him out.

Many parents dealing with food allergies (or not) think that this is just the way life is; that food allergic kids need to get used to it or "suck it up" so to speak. I can't tell you how many parents let their children be excluded in school, convinced that it didn't bother them, only to realize the compounding results of exclusion over time. There have been studies done on the quality of life for the food allergic and the results are grim.

There are other ways to celebrate events in school that include ALL children. You wouldn't exclude a child based on race, religion, sex, or any disability; so it baffles me that it's still acceptable (to some) to exclude children with food allergies. Thankfully life threatening food allergies are covered under disability laws. You need to know your rights and exercise them.

Where have you found the most support?

I started out getting the most help online. Now that I volunteer with Asthma Allergy Foundation of America, I am meeting more and more local individuals within the allergy community.

When you think of the future and the work you are doing, what gives you a sense of hope?

Seeing families overcome the shock of a life threatening diagnosis and seeing children thrive-despite how different their lives can be from other children-is pretty amazing. We've all heard about the recent treatment studies. While I'm hopeful for a cure some day, we still have a long way to go. In the mean time families still need information and support.

I'm a firm "pay it forward" believer. If I can make a difference for just one person or family then it is completely worth it for me. I'll keep doing this and advocating for allergy awareness as long as it continues to help others.

To learn more about Ruth and Best Allergy Sites, visit her page here at WEGO Health.

Spotlight Interview: Amy Leger from The Savvy Celiac

Spotlight On: Amy Leger
Visit her at: The Savvy Celiac
Blogging Since: October 2008
Other Blogs: I blog about running on RunningMoms website, for moms (or any women) who are trying to fit running into their busy lives.
Occupation: Freelance writer/communications professional
Volunteer & Advocacy work: Volunteer for Raising our Celiac Kids, Volunteer singer at Grace Lutheran Church. I bothered (annoyed, pestered, worked with) my child’s school district enough during the 2007-2008 school year that they started a gluten-free menu for all children in the Anoka-Hennepin School District in Minnesota last October.

Once diagnosed, it’s okay to grieve, whether it’s you who was diagnosed, or your child. Take time to feel bad, but then pull up your bootstraps and get going with the gluten-free lifestyle change.

How long ago where you diagnosed with Celiac’s Disease? 

It actually is my daughter who has celiac disease. She was diagnosed in June of 2000 at the age of 15 months. She had the typical symptoms you see with kids: distended belly, vomiting every 9 days, frothy diarrhea. She was so crabby all the time that my husband and I wondered – is this what we will have to endure for the rest of our lives?

Does she suffer from other allergies or intolerances? She does not.

What made you start The Savvy Celiac? 

Two reasons…celiac started to impact my family beyond my daughter: last summer my brother was diagnosed with celiac and then in August we also took in an exchange student from Norway who has celiac disease. I felt like I had enough reason – just to help the three celiacs in my life.

The other reason also happened over the summer. I wrote an article about how the Rochester, Minnesota School district is feeding nearly two dozen kids daily with their gluten-free menu. I showed how it all started with one question from a mom and it boomed from there. It was picked up by Food Service Director magazine and published in September 2008. I got a great response from it, as did the Rochester School District. (Food Service Director Magazine: A Gluten Free Solution) That’s when I knew I could have a positive impact on this cause. About a month later I started The Savvy Celiac, with the goal of really bringing out some issues, research, and maybe things people hadn’t thought of before.

What are the first 3 tips you tell people who come to you who are in the initial stage of diagnosis? 

I come at it from a parent’s perspective:

1. If you haven’t had your biopsy yet, don’t go gluten-free. You could end up with a test result that implies you don’t have celiac.
   
2. Once diagnosed, it’s okay to grieve, whether it’s you who was diagnosed, or your child. Take time to feel bad, but then pull up your bootstraps and get going with the gluten-free lifestyle change.
   
3. Start slow with your diet change introducing only the most basic foods (eggs, vegetables, meat, fruit) at first. More complex foods (processed, gluten free but not prepared in a gluten-free facility (like mainstream things: Cheetos, Doritos, etc)) should be introduced one at a time. This way if you have trouble with a particular food, you’ll know which one it is right away. Emma was 15 months old. She lived on eggs and formula until I learned how to make bread. And we slowly worked our way up to a full complement of food. Of course that’s easy to do with a 15 month old, and not as easy with a 30 year old.

What was the most surprising thing about going “gluten free”? 

Two things: Once you get the hang of the gluten-free lifestyle, it really is not that tough to do

And you find that nothing is immune to the potential for gluten involvement: ie Rice Krispies, lipstick, even my daughter’s bubble bath.

What are you most proud of? 

My celiac daughter who even questions me to make sure the food I’m giving her is gluten free.

What are you passionate about? 

Equality. I don’t like it when my celiac daughter feels left out at snack time during an activity (sports or school). I know life won’t be that easy for her, but if I can help educate the masses along the way (like my daughter’s school and the gluten free lunch options) maybe I can help make the gluten-free lifestyle more acceptable among a majority of people.

What’s your favorite food? 

Glutino Pretzel Sticks. Perfect for snacks: plain or with cheese. But also serve as a great substitute for crunchy Chinese noodles that go in Chow Mein. I use these for all of the above all the time as do my daughter and our exchange student.

To learn more about Amy, visit her WEGO Health page.