Thoughts on Sharing About My Health in Social Media #NHBPM

Why yes, I do a lot of sharing about my health in social media.  What I share and how I share it has definitely been a "decide as I go" process because, by nature, I've always been a "learn by doing" kind of person.

Let me share this evolution with you as well as my current guidelines and rules for how I share about my health, my life and my relationships on my blog.

In the Beginning

When I started writing online in 2006, I did so with the intention of informing others about what was going on with my health problems and my quest to get diagnosed, treated and get better.  I used a blog as an alternative to sending out emails to everyone whenever I had an update to share.  I initially used the now defunct AOL Journals for this purpose.

AOL Journals wasn't what I would consider a true blogging platform like Blogger, which is what I use today.  To me, it had more of the feel of a personal journal versus a blog and the posts I wrote there were more like emails: updates about my health, musings about my life, funny forwarded emails and random pictures, sayings and thoughts. In that regard, I guess you could say it was similar to how people use tumblr today.

I'm pretty sure my AOL Journal was public.  But back then I didn't know or even care about how many people came to visit.  I'm not even sure if my posts there could be brought up using a search engine.  And if I am remembering correctly, I think the only comments I ever got were from my family and friends.

The Switch to Blogging

When I switched to Blogger in 2008, I brought this "blog as journal" point-of-view with me.  When I started writing in earnest in 2009, I didn't have a clear vision of what my blog was going to be about and my posts really ran the gambit when it came to subjects.  At that time I was really trying to develop the habit of writing on a consistent basis, so I often used prompts from NaBloPoMo, the National Blog Posting Month group, which meant sometimes I wasn't writing about my health at all.

As time has moved on, my blogging mission has become much clearer: Let's make life better, together, despite chronic illness.  So I went back and removed some of my earlier posts that didn't fit with my blog mission.  My writing style has changed from journaling to blogging thanks in large part to blogging courses like 31 Days to Build a Better Blog and Content Brew, health blogger webinars sponsored by WEGOHealth, general blogging websites like the SITS Girls and groups like the Chronic Babe Bloggers! over at the ChronicBabe forum.

I guess that is a very long-winded way of saying that, over time, I have narrowed my sharing to my health and those aspects of my life that intersect with my chronic illnesses.

How I Decide What to Share

I always, always, always write about my own personal truth.

Since the beginning, my mother-in-law has read my blog.  She is my most loyal reader and I love her for that.  Knowing she reads every blog post actually helps me in a really important way: before I hit publish, I use her to gauge the appropriateness of my content.  As time has gone on and my readership has increased to include high school friends, former co-workers and my neighbors, my "appropriateness compass" has grown.

I am pretty sure everyone my husband and I know are aware of my blog...and I tailor my sharing accordingly.

Knowing how many people my blog reaches, how it comes up in search engine results and how broadly I promote it on Facebook, Twitter and Google+ means I've developed a greater awareness of how far and wide my words can travel.  That certainly gives me greater pause before I hit the publish button!

Since I am currently permanently disabled and unable to work, I haven't faced the issue of social media and employment.  I guess I'll cross that bridge if and when I get to it.

I firmly believe that what I write here must be things I would be comfortable sharing with someone in a public place, things I wouldn't be horrified or embarrassed about if someone overheard what I was saying.  Which means I don't share all the details about my health and relationships here.

As much as I would like to vent, I choose not to publish my raw, unedited thoughts on my blog.  I prefer to use Twitter, and to a lesser extent Facebook, to share reactions and in-the-moment opinions. While my daily life does influence a lot of my blog posts, I choose to let events percolate in my brain for at least 24 hours before publishing about them.  Then I always strive to focus on the big picture, i.e. lessons or insights I've learned from what happens in my life and health care odyssey.

I always think twice, and usually three times, before I use anyone's name on my blog.  It's an easier decision when one of these things is true:

• the person has a social media presence (blog, Facebook, Twitter, website, etc.)
• the person gives me permission to mention them in a post
• using a name is really integral to the story I am telling

If I choose to mention family and friends, it is by first name only.  Most of the time, I prefer to mention their relationship to me (husband, sister, friend, etc.) rather than a name.

I do use my real first name, but I don't share my last name.  I share that I live in Los Angeles because it is a huge city and knowing that won't help you find me.

I trust that my readers are decent, honest people who aren't interested in violating my privacy or cyber-stalking me.  That said, someone did call me at my unlisted home number to complain about a blog post I wrote...and I am well prepared to handle this kind of situation if it ever happens again.

I only write about someone else's story if they give me their permission to do so, and then only if their story relates to or intertwines in some way with my own.  I do share stories about people I have known who are now deceased; in this case, I make sure I only share basic facts about them when describing the impact they had on my health journey and life.

My Rules for Sharing

In summary, I would say that these are my rules for sharing about my health and personal life in social media:

1. Don’t publish anything you’d regret seeing in print.
2. Don't publish anything you wouldn't say in person.
3. Don't publish anything you wouldn't want the whole world to know or see. 
4. Remember what you publish will go on to live a life of its own, which means you can’t take it back or delete it later.

Bits and Pieces: A Sunday Extra Edition

Extra Warmth by somadjinn

Things have been a bit crazy around here.  Thankfully I find myself enjoying a little pause in the action this weekend, so I thought I'd take the time to make up for some missed posts during the week and write a weekend update.

My Family

I got a phone call eight days ago from one of my Aunts back in Illinois. One of my eight cousins died on July 8th from what appears to be complications from type 2 diabetes. He was only 42.

As you know, I have type 2 diabetes too, so the news kind of hit me sideways. Granted, our situations are different, but still it gave me pause. Whenever someone in my family dies, like when my mother died of colon cancer or my dad died of Alzheimer's, I can't help but wonder, "Could that happen to me too?"

My Hands

Earlier this month, I followed through on a recommendation from my visit to the Mayo Clinic in Arizona and saw an orthopaedic hand surgeon here on Los Angeles.  He confirmed the finding that I have significant carpal tunnel symptoms in both hands and that surgery can be a fix for my condition.  This past Thursday I scheduled surgery for my right hand on Wednesday, August 31.

Now my challenge is to stay focused on how much this might help me pain, instead of getting sucked up into the anxiety a pending surgery creates.

My Sleep & My Diabetes

Have I mentioned that I have been using a very low dose of Seroquel, prescribe by a sleep doctor, to help me get better quality deep sleep for a while now?  Unfortunately, this medication is known to cause problems with blood sugar.

Due to my ever increasing Hepatitis C viral load, I've been having more and more problems managing my blood sugar. It's gotten to the point where I contacted my endocrinologist asking if I needed to start a second medication in addition to Victoza.  This week I decided to take a drug holiday. Lo and behold, my blood sugar has dropped from between 180 and 200 to 140 and 180 fasting in the morning. Seems stopping this medication might be the right direction to move in.

I am worried that in the long run this is going to negatively impact my sleep, but I do have a new medication to try from my neurologist that might be able to help.

My Blog

I decided a few months back I wanted a blog make-over. I also decided it was time to hire a real blog designer to help me with this task. My project got off to a really rough start, but I made some changes and hired a new designer.

I am now working with Katie Lane of DreamUp Studios who is making the process a breeze and I am so excited about my upcoming blog redesign. I've loaded a couple of things onto my blog today to give you a sneak peek of things to come.

If you are thinking of hiring someone to redesign your blog or website, create a logo or draw a custom illustration, I strongly encourage you to head over to DreamUp Studios and take a look at the awesome things they can do for you too.

Five Days Back & I've Run Out of Gas!

My apologies if you've come here looking for My Mayo Clinic Adventure Day 3 post, because as you can see, it's not here!

I've spent this past week incorporating extra rest into my schedule to recover from my week long trip to Scottsdale, Arizona. Unfortunately, I have run out of gas and wasn't able to complete an entire week of blogging during my first week back home.

So thank you for stopping by and thank you for your patience with me as I work to get back on track with my normal blogging schedule. I plan to post all about Day 3 this upcoming Tuesday, March 29. Until then, I plan to have a quiet weekend resting, relaxing and refueling my tank. I wish the same for you too.

Related articles

• My Mayo Clinic Adventure - Day One (ohmyachesandpains.info)
• My Mayo Clinic Adventure - Autonomic Testing on Day 2 (ohmyachesandpains.info)
• Mission 2011: A Report on My Big Special Event (ohmyachesandpains.info)

It's a Bloggiesta Weekend, Ole!

I love my blogging friends. They always let me know about the most interesting blogging events, carnivals and challenges...

Now I'm a day late to the fiesta, but I still have time to participate in the 4th edition of the Bloggiesta. This edition goes from January 21 to 23 and there are tons of assignments and mini-challenges that I can participate in, all with the goal of making my blog a better one.

Plus I love the Bloggiesta mascot, Pedro--Plan, Edit, Develop, Review and Organize.

(Hmmm... I think I should include Pedro into my whole fibro-friendly concept.)

So I'm taking time this weekend to do the following:

• clean up my blog tags
• work on my archive page
• back up my blog
• analyze and re-evaulate my blog
• manage my feedreader
  

The entire Bloggiesta fiesta last 76 hours and I'm joining 36 hours in, so my list is small and easy this time. That's OK, because the next Bloggiesta event is coming this July and I plan to participate more fully at that time.

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I Am One Thankful Blogger

Image via Wikipedia
Today I am taking a few quiet moments to reflect on my blessings. This Thanksgiving, I find myself feeling the most thankful for being a blogger/writer.

I started blogging as a way to better communicate with family and friends about my ongoing health problems beyond the somewhat impersonal en-mass e-mail. I wanted to create a place to receive updates from me that anyone could access from anywhere, whenever they wanted. I wanted to give everyone a choice rather than another e-mail to read (or delete.)

I truly had no idea that, by blogging, I would be joining a community. In this past year of active blogging and participation in the patient blogger community, I have experienced:

• support and encouragement to become a better writer
• opportunities for friendship
  
• encouragement and feedback from readers
• writing inspiration from other people's posts and comments
  
• collaborations through blog carnivals and blogging events
  
• and many, many other benefits
  

Today I can say that I am no longer blogging to just inform my family and friends; today I am blogging with purpose. My purpose is to be helpful and be of service to other people living with chronic illness, to support and inspire them on their journeys of discovery, learning living their best lives despite chronic illness.

To show my appreciation to all my friends, I created a Twitter daily newspaper over at paper.li which I have titled The Chronic Friend Daily.

My newspaper highlights the work of many of my fellow chronic illness/patient bloggers each and every day. I have tried hard to ensure that all my blogging friends are part of my newspaper. However, if you are a chronic illness blogger who is also on Twitter and I have overlooked you, please forgive me and bring it to my attention so I can add you too! (Make sure you are on my blogroll too please.)

I am grateful for this new purpose in my life, a purpose that is fibro-friendly, i.e. fits well with my life with fibromyalgia.

Some More Bits and Pieces

Image via Wikipedia
A Confession

Yeah, I haven't been as consistent with my blog posts these past few weeks and I blame it on the weather.

With the unusually mild summer in Southern California this year, I admit that I have been lured outside much more in the past few weeks. That and I have a garden bursting with green beans, cucumbers, tomatoes and other vegetable delights that vie for my attention.

Inspired by my current bumper crop of cucumbers, I am delving into the world of refrigerator pickles this weekend.

It's inevitable that when I spend more time and energy doing new things, I have less time and energy for my other pursuits, like blogging. Such is life of a person with chronic illness! So bear with me during harvest season and know that my blog is still at the top of my list of priorities.

Introducing Graceful Agony

August 15th marked the inaugural edition of the Graceful Agony blog carnival. My post I Am Not My Chronic Illnesses made the list of incredible submissions and my blogging friend Jolene wrote some wonderful words about me when she introduced my post--thanks Jolene! Please support this new blog carnival by heading over there this weekend and leaving some comment love.

If you are a patient blogger, you are encouraged to get in on the action too! The best way to get involved is to join the Graceful Agony Facebook Group and the blog carnival discussion there.

What Is the New Normal?

If you want to find out what I think the "new normal" is, you'll have to head over to Colloquy Moms and read my latest Thursday post there...

Ch-ch-ch-ch-changes...

I just finished the 31 Days to Build a Better Blog challenge hosted by the SITs girls and The Blog Frog. Or should I say, the challenge ended and I did my darnedest to keep up but didn't quite get it all done! Thankfully what I was able to do helped me generate a lot of new ideas for my blog.

As the result of this training, I anticipate making some changes around OMA&P! that will make my blog a better place to visit. In fact, you can already see new items in the linkbars at the top and bottom of my blog header image: About Me, Get to Know Me in 7 Posts and the OMA&P! blog roll.

Perhaps the most important thing I can share with you is that participating in this challenge really helped me reaffirm my commitment to becoming the best blogger than I can be.

That's it for this edition of bits and pieces. Be sure to let me know what summer has lured you outside to do by leaving me one of your wonderful comments. (Did you know your comments really make my day too?!?)

Be Here Now: The Joy and Terror of My Own Domain Name

Dear Readers, 

Let me start with some important news.  I purchased my own domain name for my blog.  My new blog address is http://www.ohmyachesandpains.info, but don't worry because Blogger and Feedburner promised me you will still be able to find me, even if you type in my old blogspot address.

Sincerely,

Selena

Oh My Aches and Pains!



With that announcement out of the way, let me describe for you what it felt like to take this step as part of my Be Here Now November experiment:  

In my endeavor to be a good blogger, I regularly Google blogging topics and educate myself on how other bloggers wiser and more successful than me do it.  I ran across the term SEO in my searches, which stands for Search Engine Optomized.  What I think it means is making your blog easier for search engines to find you.  One of the pointers repeated over and over emphasized the importance of getting your own domain name, which makes the whole SEO concept work better for your blog.


So I was working on my blog and saw a link in Blogger to get your own domain name.  I clicked on the link and entered my blog name.  The .com version was already taken, but the .info version was available.  I turned to Robert, who was sitting next to me at the time, and said, "Hey I can get my own domain name for $10.  The .com is not available.  What do you think about OhMyAchesandPains.info?"  He thought about it for a moment and replied," I think .info would be fine since you are blogging and giving people information about living with chronic illness."  So then I said, "Do we have $10 in the budget for me to do this now?"  He replied, "Sure, go ahead."


I felt so excited.  Here I was on the verge of making a real commitment to my blog.  Then I felt sort of scared.  I was making a real commitment to my blog, to continue to nurture and grow it, to develop its identity, to allow it to make a statement to the world "I am serious about blogging about my life with chronic illness."  Rather than judge my feelings, I just felt them.  They were neither good nor bad, just the human expression of how we all feel when we take on a new project.  We are all ambivalent and uncertain when we start something new.  In between "This is so cool!" and "I can't believe I am going to do this." are the questions "What happens if I fail?" and "What will it be like if I succeed?"  I felt the feelings and let myself with O.K. with them as I proceed to purchase my domain name.


I actually asked Robert to double check my entries on the purchase form before I hit send and completed my transaction.  I wanted to be extra sure that I entered in everything correctly.  I could blame the brain fog, but more likely it was my excitement, happiness, nervousness and apprehension that made me doubt myself for just one moment.  After I hit send and received my confirmation, I felt joy.  


This commitment to blogging represents me taking a risk and putting myself out here in a way I can no longer do in my in-person life.  I feels good to take a risk again.  I feels good to start something.  I feels good to be a blogger.  In a weird and wonderful way, this blog is a gift from my chronic illness; I don't think I would have discovered blogging as busy as I was in my previous life.


So with terror and joy, I took the next logical step to help my blog grow.

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Linky Love: Thanks for Helping Me Update My Blog!

Image by Brett L. via Flickr

So what do you think of the new look of my blog? I spend a solid two weeks looking for free templates, headers, widgets and other cool things to remodel my Blogger blog. I want to pass along some linky love to all the people that helped to inform, instruct and inspire me to create a new look for Oh My Aches and Pains! via their websites and blogs.

My new blog template is courtesy of Our Blogger Templates and I picked the one titled Blogger Theme.

My new blog header I discovered at Smashing Magazine.com under the post Blog Headers For Free Download. The artist is Heavena Rayan of India and she said this at Smasing Magazine.com about her design, "This design was inspired by my thought process. Whenever I need some ideas, I think, research & analyse and then I just let my thoughts go blank. This is when the ideas begin to flow. I tried to visualize this whole process & this is how I imagined it. I am sure a lot of people out there would relate to this process as well."

After reviewing several different blogs, I wanted to add "subscribe by RSS" and "subscribe by email" icons to my sidebar. Thank goodness for the Blogger Sentral blog and the post by Greenlava on Adding RSS button to your blog. As you can see on my sidebar, I learned how to add the buttons RSS, email and more to my sidebar thanks to this tutorial.

Did you notice the "Share the Love" social bookmarking widget at the bottom of each of my blog posts? The widget is called Sexy Bookmarks version 2 and I learned how to embed it into my Blogger html code at the CSS Reflex: web design & inspiration blog.

Don't you just LOVE the LinkWithin widget at the bottom of each post that brings up five related stories to the blog post you just read? This is one awesome widget that beautifully showcases my past posts. How does it work? How can you get it for your blog? Click here to learn more.

Did you also notice the new orange toolbar that appears at the bottom of the page, with all the cool features like: search, translate, recent posts, random post, subscribe to my feed, share this post, Facebook Commuity chat, Twitter and a nifty post-it like notifier? This very cool blog tool bar is courtesy of my friends at Wibiya.

Finally, I have to mention my long-time blog helpers that came to my new look from my old layout: Wowzio widgets, Lijit search, Zemanta and Stat Counter.

Let me share with you the real secret to creating my daily blog posts: every week I get emails from Lijit and Stat Counter letting me know how many people visited my blog in the previous week. Just knowing how many of you come and visit me each week inspires me to keep writing. I can honestly say that you, my blog readers, are the best blogging helpers of all.

Thank you for reading Oh My Aches and Pains!

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