Image credit violetknows on Flickr

February’s Health Activist Matchmaking Month is coming to a close and this week’s #HAChat focused on matchmaking within your online community.  Matchmaking is a great way to build up your network, help people help each other, and take some of the pressure off of you as a Health Activist and community leader. Check out these tips and tricks for matchmaking and why it’s so important.

The key to being a good matchmaker is working within your online community.  Members must feel welcome and feel like they are respected and supported by other community members. A great online community is filled with:

TiffanyAndLupus: honesty, mutual health/illness journey, compassion

 

NateOsit: a lot of strong personalities and an open and collaborative feel

 

KatherineS84: Supportive people, open minds, no judgment and honesty. The more you share, the more others will open up

Introducing people to each other within in your community is not only a great way to build your network but it’s also a way to take some of the burden off yourself as a community leader.  Matchmaking is a way to share responsibility as well as make members of your community feel included.  TiffanyAndLupus introduces lupies to each other all the time, especially if they have similar health questions, issues or concerns.  Giving your members roles within your community is a great way to avoid burnout, which can be a real problem for patient advocates.

TiffanyAndLupus: Advocacy burnout is another sneaky devil & I haven’t quite yet figured out how to escape her clutches

 

Jason31480: Giving yourself a day(s) off is important so you dont get burned out also – and important to your OWN health …. #HAchat

Bringing others into your community to share the work is also a great way to keep your community running smoothly.  And while it’s great to ask members to take on roles within your community, if you have created an open and supportive environment, you might find, as @TiffanyAndLupus did, that members will watch over each other and speak up for themselves.

In terms of introducing community members to each other, twitter is a great way to do this.

TiffanyAndLupus: Using twitter hashtags that pertain to our content can help connect us to those who are looking for community. #hachat.

 

NateOsit: T4 On Twitter, you can make a list of people you interact w/ frequently, and chat w/ folks regularly #HAchat

 

Jason31480: Yes twitter hashtags can really go a long way. I try to use the #CDSN tag when appropriate – also have a list of members on twitter #HAChat

You can also use an #ff or add a cc with a group of people that have something in common.  Other ways to connect members of your community include setting up a mentor program. As Jason21480 shared, “Setting up a mentor program can be a great tool as well – matching members up together who have similar interests, symptoms, etc.”

#HA Chatters also had some great tips on how to make your daily online interactions better:

Jason3184: – pose a daily question for your members – it can be serious or fun. Such as “You know you have IBD when …” #HAChat

 

TiffanyAndLupus: Remember to respect your own health or you will not be able to help anyone! Take care of your needs so you can help others. #hachat

 

ShyDi47: We all need 2 take care of one another, @ work 2 gether @ come 2 gether as a Community that is vital either online or offline. #Hachat

 

TiffanyAndLupus: Humor is your friend! Use it to help lighten the day; never underestimate the power it has to travel online & help someone else. #hachat

Have any other tips on how to make your online interactions better? Think some of your community members would hit it off? Connect them today and share new ideas for connecting people here: editorial@wegohealth.com!

Tune in next week for the kickoff of March’s theme: Health Activists & Healthcare Professionals.

Image Credit: dalboz17 on Flickr

Health Activists wear a lot of proverbial hats – today let’s look at the host/hostess hat.

If you think of your blog or site as a the location of a party you’re throwing, and all of your readers or members as guests – you’re in the host/hostess seat. This means you have a few different jobs to juggle at once: preparing the environment (hide your valuables – or display something you’re proud of), welcoming guests as they arrive, making sure you introduce people to each other, encouraging people to make themselves comfortable, offering some refreshments (in the form of media entertainment?), and generally ensuring that everyone has a really great time.

Today let’s discuss how to go about doing that. How do you host your online community’s health party? How do you go about making connections among your guests and encouraging new relationships amongst attendees?

Join us at 3pm ET today for our #HAchat on Matchmaking in Your Health Community.

We’ll chat about:

- What makes an awesome online community.

- How Health Activists (bloggers, Twitterers, Facebookers, etc) can turn their community into an enjoyable party.

- How to play Matchmaker with those you meet online.

- Challenges you face as a “host/hostess” and health community manager.

- Tips we can all use to improve our online interaction.

- And more!

Here’s a link to the Chat room: http://tweetchat.com/room/HAchat – looking forward to chatting with you!

How/why did you become a Health Activist?  Tell us your Health Activist story!

After being misdiagnosed with different disorders/illnesses I realized I needed to be a better health advocate for myself.  I couldn’t put all my faith in the doctors to figure out what is going on with my body.  No one knows my body better than me.
Becoming a better health advocate for myself led to my wanting to help others learn to speak for themselves.  To know more about their illnesses.  I reached out.  I started a support group, for a disorder I later found out I don’t have, it was very successful.  I may not be involved any longer, but I’m happy to say the group is still going strong approximately 9 years since I founded it.  I also made some life long friends from my time with this group.  One thing I really took away from this group, most people feel alone in their struggles.  It was then that I decided I would always be available to anyone who needs to feel like they aren’t quite so alone.

I have a number of chronic illnesses.  With each new diagnosis I would dive in trying to find out as much information as possible.  Again, meeting new people who felt they were so alone.

I was diagnosed with Meniere’s disease years ago.  Meniere’s disease is a vestibular disorder causing fluctuating tinnitus, aural fullness, sudden and severe attacks of vertigo, and fluctuating hearing loss often leading to complete hearing loss.  Meniere’s is progressive, some progress more than others.  I’m in the advanced stage. In late 2009 Meniere’s took over my life.  Before then I only had it in my right ear, in 2009 it started to effect my left ear.  Early in 2010 I started a new blog, Picnic with Ants, detailing my journey living with chronic illnesses, and determined to live the most productive, healthy, and happy life possible.
Since that time, my blog has mostly been about living with Meniere’s disease.  I talk about the good, the bad, and the very ugly.  I also talk about my other illnesses, but I will admit for the past few years Meniere’s has ruled my life.

My blog is very honest, and forthcoming.  I’ve found that people do not understand just what goes on with most chronic illnesses.  This causes many people to feel alone, even though they’ve met others who have the same illness.  We do not talk about what goes on behind closed doors.  How our illnesses destroy many aspects of our lives, and how we can deal with that.  I’m trying to open those doors and help people realize it’s alright to talk about the nitty gritty ugly details.  If it helps one person feel less alone, it has been worth all the embarrassing stories I tell.  I’ve also found that others who read these post who do not have the certain illness, like Meniere’s, or may know someone with the illness, can finally understand what we go through.  After writing a very detailed post about a vertigo attack, one reader stated, “This is the most terrifying thing I’ve ever read.”  This reader has many issues of her own, when I read this comment, I cried.  I felt validated.  This one person understands now, I hope other’s do, but just knowing one person understands means I will continue to write about it, until I can reach another and another….

To summarize, there are 3 main reasons I’m a health activist, to help people realize they are not alone, to help people understand they must be an advocate for themselves, and to help people understand more about the details behind certain illnesses.  

What are your goals for 2012? Anything you’re really looking forward to?

Personally, I’m looking forward to having less vertigo.  I had surgery on my left ear in December, I had the same surgery on my right ear in 2010.  This surgery should reduce the vertigo by 70 – 90%.  After being mostly bed bound for nearly 6 months in 2011, because of daily vertigo, I am looking forward to doing things.  I want to continue my promise that I will never take a good day for granted.  Everyday I feel well enough to do things I will take advantage of every moment.  

My goals for being a better Health Activist in 2012:

I want to reach more people, help them learn more about certain illnesses, support those who feel alone, and (perhaps most importantly) help people accept their chronic illness and feel more positive about their future.  This last point was a very hard one for me to come to terms with, I hope I can help others do the same.  Including encouraging them to seek professional help to deal with the loss of independence.

I also want to give back to the caregivers.  To acknowledge them and hear their stories, how we can help them and let them know how very important they are.

Due to Meniere’s I’ve lost the majority of my hearing.  I plan to be more active in the deaf community, learn ASL (American Sign Language) and help others who are losing their hearing later in life.  

If my health permits I hope to attend conferences for health activist, and one specific conference for the deaf and hard of hearing.

As I often say on my blog, My life may not be what I expected, so I will change my expectations.  One day at a time.  For example:

When I was confined to my bed I tried hard to be as productive as possible, through the vertigo attacks and the migraines.  I started a second blog called Create to Heal, all about how creating can help you feel better.  Accomplishing just a small thing, can make the day seem worth while.  I’d like to further this venture.  Trying to create something every day, even if I didn’t complete it in one day, it made me feel more productive than I have in a very long time.

Be sure to follow Wendy’s work (if you don’t already) and “meet” her through the web on Picnic With Ants her TMI-nominated blog, her art healing blog Create to Heal, on Facebook, and Twitter.

Talking to Strangers: A Health Activist Perspective

by Sara Ringer

I was always taught not to talk to strangers and here I am talking to thousands of them!

Being a Health Activist means putting yourself out there.  We open up about our weaknesses, strengths, things that make us LOL, and all sorts of things that make us vulnerable with the goal of helping others who struggle with our condition.  Putting yourself out there is a great thing, you are helping many people by sharing your experiences.  Your readers can see themselves in the things you share and in turn they feel a kind of bond and closeness to you.  But how close it too close?

I’ve received a lot of wonderful feedback from people who follow my blog and YouTube channel.  Hearing those things are the things that keep me doing what I do.  But I also receive a lot of feedback that is down right creepy and sometimes scary.  A lot of this has come from video blogging.  Not only are you sharing stories and being vulnerable, but you are doing so in front of a camera.  This adds a whole new relationship between you and your community.  They see you right there in front of them, talking to them.  They know what your living room looks like, they know what YOU look like, and after watching your videos they start to feel like they know you too. I imagine this is what celebrities deal with but on a much smaller scale.  People become obsessed with people they don’t even know.

Sharing my thoughts and experiences through blogging and video blogging has been almost nothing but a good thing. It has widened my audience and allows me to get things out there in a much more personal way.  But I have also had guys who have told me they love me.  I have guys who follow me on every one of my social networking sites and never fail to throw in a creepy comment about how much they adore me.  I have had random guys who have found me on YouTube write very vulgar things or followers who ask me for my phone number.  The list goes on…

So what do you do to protect yourself?

• Emily from chroniccurve.tumblr.com writes “ I make a point not to create online relationships. By that I mean skype, personal friendships, exchanging addresses or numbers, that type of contact. Why? Because there is no way to know who is truly sitting on the other side of the screen.” She makes a very good point.  You want to be there as much as you can for your audience but you have to know where to draw the line.

• If you encourage your readers to email you, set up a different email account. I learned the hard way to not share my personal email address with my readers.  Recently a very mentally unstable and unhappy person came across my blog and didn’t like what I had to say.  He started emailing me hateful messages numerous times a day and would change his email address so he couldn’t be blocked.  I wasn’t the only one in the community he was threatening but I learned quickly to not share my personal email address.

• Use caution: You might feel after talking to someone for awhile that you know the person and that they can be trusted, thus offering up information about yourself you normally wouldn’t.  This brings us back to “there is no way to know who is truly sitting on the other end of the screen.”

• Know when not to respond. I try to respond to everyone but there are certain things I do not respond to. If it is inappropriate or creepy I usually pass it up.

• Keep in mind the internet is full of all sorts of people. Not everyone is mentally stable, “creepers” do exist, and not everyone can be trusted.

Overall you just have to use your best judgement. There have been times when I’ve offered up my phone number or sent out a care package.  I have created some of my best friendships through being a Health Activist. You just have to be careful.   As Health Activists we are passionate about what we do and we want to create a community that is open and safe for everyone. You don’t have to talk on the phone, skype, or send things via snail mail to create meaningful relationships with your audience. With facebook pages, twitter, message boards, and email there are plenty of ways to create relationships with people and offer support in a safe way.

So how does this work online?  Do you ever read someone’s blog and just think, “OMG I wish we were friends in real life?”?  Do you get a rush from a new Facebook poke? Do you stalk your crushes on their various social platforms? We know you do, we all do.  Yesterday’s #HAchat we talked about who you’re crushin’ on in the virtual world and what about them you’re into.

It turns out that the criteria for internet crushes is pretty similar to real-life ones.  People admire qualities in others that would draw you to them in person, someone who is open and who makes you feel comfortable, someone who is smart and passionate about their work (like all of our Health Activists!) , someone who inspires others and can make you laugh during the toughest time.

Lizzmariposa: confidence….always, always, always…inspiring confidence in others, or their children, that they can soar above the clouds…#hachat

Nateosit; T1.2 I love people who are passionate about what they do, who are inclusive, understanding, and help out others #HAchat

Betizuka: T2. I admire their dedication, their courage, their sense of humor, their charisma. #hachat

So what makes an internet crush different (other than the fact that you don’t know the person)? Crushing on someone for their internet skills (@sara_ringer) or for the design of their blog, or for promptly responding to emails, tweets, and Facebook posts. It’s a lot of work to stay connected in both the virtual and non-virtual world, and reaching out to people personally is definitely a crush worthy attribute. It shows your followers that you care about them and you want to help each person that you can. Tech skills will get you noticed too, as will your dedication to regularly posting new content.

Sara_Ringer: I envy tech savvy people. I see a blog I like and swoon over their skills.#Hachat

Tmana: T1.2 For some, the ability to post daily — it takes me a lot longer to craft a great blog post than it seems to take my “crushes” #hachat

Tmana: T1.2 For others, their access to information (and review devices) before it is common knowledge (or available to purchase) #hachat

Internet crushes inspire slightly different feelings than real-life ones though, especially in the health sphere.  Health Activists inspire, give advice, and teach.

Sara_Ringer: It’s a feeling of learning from them. I think to myself “i wish i thought of that” when I see something I like/admire. #HAchat

Lizzmariposa Sometimes, I am more inspired by the folks who just quietly do the things they need to get done, without fanfare… Inner strength #hachat

Lizzmariposa: It’s a feeling of learning from them.  I think to myself “I wish I thought of that” when I see something I like/admire.

Susanmees: I crush on people who seem to just be really ‘good’ – I see people facing extreme challenges and offering me kind words. Amazing. #hachat

 

One of the best parts of crushing on someone is that those feelings make us want to better ourselves. lizzmariposa: “When I am around these folks, I am reminded of… how much potential there is in me, and I forget for a moment I have X illness.”  Think about someone you have a crush on in the real world. You might pick out a cute outfit on a day that you’re going to see them, make sure you do your hair, or just do little things you think they might notice.  It’s just as important to put your best self forward online, and yesterday’s chat provided great tips for making yourself more crush-worthy.  It’s important to bring non-health related stuff into your writing to round out your “voice” and make you more approachable. Similarly, if you can, reaching out to your followers by answering emails, responding to comments, and re-tweeting or tweeting at followers builds your personal network. Sharing those “AHA” and “UGH” moments (@lizzmariposa), as well as your successes and failures, personal bests, and helping to connect others. Vlogs are another great way to make a personal connection with your followers.   Give people something to laugh about. Share. Be open.  And finally, in case you were wondering if anyone’s crushing on you:

Sara_Ringer: Just a reminder to all of us here that you do all these great things. *crushes on you* HAchat

 

How/why did you become a Health Activist?  Tell us your Health Activist story!

I started the Broken Brown Egg as a personal blog at first, to begin the dialog I wasn’t seeing on other blog sites.  I am a member of the online community at ChocolateBrides.com, and there were a few discussions about infertility, but no real in depth talk, I suppose because many of us saw those rare instances as flukes. As I started researching, though, I found that infertility was extremely common, 1 in every 8 couples, which then made me wonder why none of the blogs, websites, or even advertisements showed black couples.  I figured it was out of shame and fear, and decided to fight that stigma head on. As a librarian, I began to use my research tools to try and gain more information to share with people of all backgrounds.

 

I share my own stories, the good and the bad, in the hopes that someone who is feeling like they are the only person these crazy things could possibly be happening to, will know different.  I can’t be the ONLY black woman who suffers from PCOS, or menorraghia (extreme menstrual cycles), or even just health frustrations.  I try and think of what I wish I‘d heard or the thing I need to hear, and Isay it so that someone else who needs it can get it.  I try to be as brutally honest about my fears, my frustrations and my journey so that others will hopefully glean a little courage from me.  It has also made the more mainstream infertility advocates and groups take notice!

What are your goals for 2012? Anything you’re really looking forward to?

I’m so glad you asked this question!!  This year marks what I’m calling The Broken Brown Egg’s 2012 Season of Support!  We will be rolling out as many initiatives as possible to get people the best possible personal support.  First on our list, launching on March 3, will be our Waiting Room Buddies program.  Through this initiative, Eggshells, as I call those who interact with my site, will be able to text me when they have upcoming medical appointments.  I will then pair them with another Eggshell who agrees to just be their virtual friend in the waiting room, texting back and forth to keep them calm, to go over goals for the appointment, and to be a listening ear.  I know firsthand how frightening and lonely waiting rooms can be, and how important it is to have someone there with you.  My hope is that friendships will be formed, and also that people will be more comfortable making and attending appointments.

Aside from this first phase, I’ll be rolling out a few more goodies as the year goes along.  I cannot WAIT.

Be sure to follow Regina’s work (if you don’t already) and “meet” her through the web on her site, her Twitter, and her Facebook.

Today’s post takes a more literal look at our theme of “Matchmaking Month,” as Sharifa writes about actual matchmaking sites online. As we discussed in last week’s #HAchat – telling someone you’re romantically interested in that you’re living with a health condition – is not something anyone looks forward to. The conversation itself is scary and anticipation of the recipient’s response might be even scarier. When you’re thinking of love and romance – the last thing you want to focus on is the tough challenge of living with a symptoms, treatment, and the weight of self-care. Perhaps this is the exact thought behind the creation of certain dating sites that are especially tailored to patients who are chronically ill. Just as there are sites dedicated to members of certain religious groups or centered around particular hobbies – these patient-dating sites reveal a few of the important facts about each of the members’ lives – just related to their health instead. Let’s look at what these sites aim to accomplish and how they compare and contrast to our own patient-to-patient health communities. –Amanda

Finding Love Online as Patients

by Sharifa Simon-Roberts

Yesterday was Valentine’s Day! At the mere sight of those words, I am certain many people’s minds wander to thoughts of hearts, roses, stuffed animals, chocolate, jewelry, etc. – physical manifestations of romance or love or infatuation, whatever the case maybe.

In this post, I will not be adopting that angle. I refuse to dwell on the commercial idealistic aspect of the day. Instead, I invite you to explore with me the world of matchmaking specifically the realm created for those who are ill and thus feel challenged when it comes to dating, making special connections and finding love.

You have seen this phrase on a television commercial in the past probably: “1 in 5 new relationships begin on an online dating site.”  I can not help but wonder if this statistic is reflective of those who are chronically ill as well. Given the rise of websites such as Ostodate, Prescription4Love and Whispers4u, I suspect the number might be higher for those who feel constrained by their disease/s.

‘I have not heard of these websites. What exactly are these websites?’  Already, I can sense questions forming. Before I take any, let me tell you how I would describe these sites and then we can move on from there. These are all online dating and/or friendship sites for people who suffer from certain diseases, who have distinct health ailments and/or who are interested in the aforementioned.

Someone who is not afflicted with an illness may inquire how these websites are different from the traditional set, for example Match.com and eHarmony? To a person who considers himself/herself healthy the majority of the time, the distinctions may not be very clear. However, they are present. Here, are some of the unique qualities of dating websites targeted at people with health conditions/ illnesses offer various communities and what an asset they are to their users.

1. To start with, websites that cater to people with health conditions eliminate the need for the dreaded ‘awkward conversation’ of revealing an illness to another person.
2. Users of these sites are more likely to find support, rather than rejection. I admit, that sentence sounds harsh. After researching this topic, I have to say it is an unfortunate but because it is a real fear for those living with health conditions – this is a comforting quality.
3. By dating or befriending someone else who is familiar with the disease, the educating phase isn’t necessary. The majority of stereotypes, misconceptions, and stigma that could potentially come into play are removed. Interactions can, instead, focus around more in-depth conversation.
4. These websites offer reassurance to users as they know there is a place where they can possibly find love without judgment, and through this, the health condition is no longer a defining component of their profile. It offers an even playing field for those on the site.

It’s important to keep in mind that many people truly are hesitant about letting others know they are sick for a variety of reasons. There are enough things to worry about when beginning a new relationship – without adding apprehension about revealing your condition to others. For the same reasons many patients go online to find a community of those who understand – these sites aim to accomplish the same thing.

Are you in this situation or do you know someone who has been? What do you think of the idea of condition-specific dating sites? Share your thoughts with us.

I think this is a fitting conclusion to today’s post: We all yearn to love/ find love and human connection regardless of our perceived individual boundaries.

Happy Matchmaking Month all.

Join us at 3pm ET – to discuss these topics:

- What is an internet/online/Health Activist “crush”? Do you have another word for it? How do you define it?

- Who are your internet crushes (or Health Activist crushes if they are health leaders) and what qualities do they have that you love?

- Have you met them? What would you ask them or talk about if you could meet?

- Let’s look at ourselves – what are your best qualities? What do you think attracts people to your presence?

- What’s something we can all look for when trying to find people online to inspire us? What’s something we can all try to bring our personalities into our Health Activism?

It’s going to be a fun chat!

We’ll see you there: http://tweetchat.com/room/HAchat

How did you become a Health Activist? Tell us your Health Activist story!

My name is Cookie and I have a disease called Ankylosing Spondylitis, it is an autoimmune arthritis. My symptoms began around the age of 12 and my diagnoses came at the age of 43. I was heartbreaking to be diagnosed with an “invisible disease”, but was devastating to learn that this disease was also “invisible” to the medical profession and the world I lived in. Six years after my diagnoses my doctor suggested joining the Spondylitis Association of America. Finally instead of being “invisible” I was upgraded to a shadow. I became friends with people who understood me and was inspired to do my part. I just wasn’t sure what my part in all of this was. I have always been a straight shooter and realistic person, so I knew whatever it was that I was going to do to make my life with Ankylosing Spondylitis have a purpose. It was going to be real. My inspiration came from the “Scar” project and a vision was born.

http://thefacesofankylosingspondylitis.com/a-s-face-0062-cookie-hopper

http://thefacesofankylosingspondylitis.com/a-vision

 

The reason I decided to make my vision a reality is because of two people. A young man by the name of Stuart was on our support forum. A bright young man who had his whole life ahead of him and lost his battle. A battle with Ankylosing Spondylitis that is often thought of as just a “bad back” He death, his pain and depression haunted me. I carried him inside of my heart thinking one day I will know what it is, that I am meant to do. Time passed and my life became full of other issues and then I came across a young girl by the name of Sara who was dying. She had ankylosing spondylitis and was under hospice care. I read her blogs, watched her change the world from inside her home, bedridden and knew that I wanted to make an impact as strong as she had. One day while speaking with Kevin Andrews he showed me a picture of himself. At that moment I knew the only way that people were ever going to take Ankylosing Spondylitis seriously was to understand the impact that this cruel invisible disease does to people. We suffer from the stigma of you don’t look sick, but also fall into the pitfall of I don’t feel that bad. I wanted people to know who was behind this invisible disease, who were living in pain, depression, isolation. I wanted people to understand what it is to live with a chronic disease and be invisible, even to the doctors treating you. I wanted to make sure that my lessons, hardships and understanding while living with this disease made a difference, in someone’s life. I am not out to change the world. I am out to change one person’s life and someone’s opinion of Ankylosing Spondylitis. I want to know that my life with this disease was not wasted.

What are your goals for 2012? Anything you’re really looking forward to?

My goal for 2012 is to have collected 1000 stories for http://thefacesofankylosingpsondylitis.com

I am working on a site that honors each of the stories in their own native language. http://internationalfacesofankylosingspondylitis.com

I am working on a website to help show the world that Anylosing Spondylitis is no longer a man’s disease http://ankylosingspondylitisasallsexes.wordpress.com

My dream is to be able to complete my personal mission of sending out 1000 wristbands uniting these brave and wonderful people who trusted me to be the guardian of their souls and share their stories.

I am working on showing that we are not alone and it is a small world after all. I have all the faces and support groups on a Google map. (Click here to see the map.)

I am working on a support board that offers information on doctors, medicines and assistance, by state. There are so many wonderful sites to get information but it is difficult to always find what you need close to you. http://thefacesofas.proboards.com

I have also set up two online stores to buy products for The Faces of Ankylosing Spondylitis. One store the profit will be donated to the SAA and research, the other is going to a fund being set up to help people who are approved for help with medical cost.

I started The Faces of Ankylosing Spondylitis on Oct. 8, 2011

My mission is to bring awareness to an invisible disease.

My hope was to put faces to the awareness ribbons.

My  goal is to collect 1000 stories by World AS Day 2012

These are the steps that each face take when arriving at my door.

I put the Face on the page AS HAS A FACE

I then put the Face and story on a page Name then Number because it is important to me for us to not be a number.

I then put the Face and story on a page AS Face Number and Name to keep the amount collected in sight.

I then add the name to the Picture and put in a video page called AS Has A Name

I manually link each story to the previous story.

Then I make sure to put a comment on both pages.

Then I copy and paste the story to a website called.

http://ankylosingspondylitisasallsexes.wordpress.com Ankylosing Spondylitis =A.S.=All sexes

to show that AS is no longer a man’s disease.

I then add the story to the WEGO health blog and Daily Strength blog sites.

We are also on network blogs and blogspot and blogger.com

I then twitter the story @facesofas

Then I put it on our support forum http://thefacesofas.proboards.com

My goal is to list support groups, doctors and pain managements and information by states

I then put it on our FacesofAS Google map http://maps.google.com/maps/ms?msid=214105950539833975863.0004b192142abdcb13a1e&msa=0&ll=51.533007,-0.275919&spn=0.000908,0.002714

I have listed on the map each Face story, plus support groups, and crisis hotlines

I mail a link to every person so they are able to share their stories with everyone.

I then post the story of Facebook on the ASAP page SAA page The Faces of AS page

The AS all Sexes Page and the Ankylosing Spondylitis Causes

I also run a closed support group called The Faces of Ankylosing Spondylits

I also run a closed room called Laugh Your AS Off that allows people to laugh and forget their troubles.

I also have two online stores I am working on at this time to be able to raise funds for research.

Today is Feb 3, 2012 we have 213 faces and 81,886 views on our webite. (Editor’s note: And today is February 13th and there are already 90,088 hits!)

My goal is when the day comes to meet my maker I will know in my heart that I did the best I could to my ability to make a difference.

Be sure to follow Cookie’s work (if you don’t already) and “meet” her through the web on her blog, her Twitter or Facebook, and the Faces of AS community.

How/why did you become a Health Activist?  Tell us your Health Activist story!

Kim: I’ve had type 1 diabetes for 25 years, but for most of that time I felt very alone in living with it. When I found the diabetes online community in 2009, I felt like I had finally found people who “got it”; who were dealing with all of the same frustrations, struggles, annoyances, and apprehension that I was. That feeling was so liberating!
 
I started with forum-based communities like Juvenation and TuDiabetes, and eventually started my own blog, Texting My Pancreas, in 2010. Connecting with others with diabetes online had changed my health and well-being so drastically for the good, and I hoped that sharing my own story could do the same for someone else. Letting others know that they are not alone, and laughing with them about the parts of diabetes that really suck (disclosure: that means “pretty much all of it”) is important to me.

What are your goals for 2012? Anything you’re really looking forward to?

Kim: I’d like to look back on 2012 as the year I had the confidence and courage to take some bold steps in my life, both personally and professionally. I want to keep spending time on the things that make me a happy and healthy person, and learn how to say “no” when I need to. I want the You Can Do This Project to find a wider audience in 2012, and I’ll be working on ways to make that happen.

Be sure to follow Kim’s work (if you don’t already) and “meet” her through the web through her blog, her Twitter, or the You Can Do This Project.