UII Blog Carnival #1 - Successes!

Wow, I am overwhelmed!  I was nervous about putting out the request for submissions to our first blog carnival, because I thought no one would respond.  It's not always easy to break into new projects.  But your support was overwhelming!  Many of my blogger friends posted links encouraging others to sign up, sent in their own submissions, and WEGO Health jumped in before I could even ask, sending bloggers my way.

And what an inspiring bunch of writers you are!  The topic for this first UII Blog Carnival was 'success stories'.  I asked writers to send me their tales of treatments/procedures/tips that made their lives, or the lives of their loved ones, better.  This was my sneaky way of giving you a two-for-one: (1) really good reasons to be positive and hopeful, and (2) some concrete ideas of things that have worked for others.  Enjoy - I did!

Image of Awesome Kid found here.

Elisa, who tweets as @SjogrensStyle and maintains a blog by the same name, reminds us even things that aren't perfect can still be pretty great.  Her post "Friday Favorite: Plaquenil" covers the joy of an improved general well-being, weighing benefits & risks, and best of all - answers a question I've been wondering about for years (thanks for the history lesson)!

Licensed marriage & family therapist Laura shakes things up a bit...literally.  Instead of a traditional blog, she sent me a link to one of her articles published on the website HalfMoonBayPatch, titled "Dancing Despite Disabilities".  I'll be honest, I think Laura wanted to remind us our lives & passions don't stop when we're diagnosed, and I LOVE that message...but I also saw a hidden gem in this article.  Read closely and see if you notice the way one person helped themselves GET a diagnosis - which in turn led to their ability to regain their life!  Follow Laura on Twitter at @lcstrom.

@IBSTales tweeter Sophie Lee discusses a set of challenges familiar to many readers.  After beginning several treatments at once, she now wonders which are actually helping and which may be extraneous.  However, stopping them poses the risk of returning symptoms.  Read about the successful treatments Sophie uses & how she works through the question of which are really necessary in her timeless post, "Gaining Control".

Our next contributor copes with many "invisible" realities which complicate her life, especially how she interacts socially.  Blogging under the pseudonym Displaced and tweeting at @GonnaEatWorms, this blogger touches on many of the emotions that come with prioritizing your own needs.  I relate to many topics in her post "Claude Raines has nothing on me!", such as the silver lining to having a condition which is 'invisible' and the inherent responsibility many of us have to force society to deal with things that make it uncomfortable.

My brother Jon, who tweets at @thedorfist, has been a guest blogger for me in the past.  He's started a new blog, chronicling his revelations in the post-collegiate world of the Asperger's degree holder in The Aspie Epilogue.  In his recent post, "...But Does It Blend?", Jon discusses key considerations in moving past emotional explosions (or helping an Aspie to do so) and how to grow from these experiences.

Sjogren's and other invisible illnesses are not limited to the English-speaking, of course.  One of my long-time favorites, Jazzcat, is a bilingual blogger!  Jazzcat's entries are written first in her native French, then translated (by her, not a machine!) into English in the second half of every post.  After beginning to practice yoga a year ago, she swears by it for therapeutic & mobility purposes today.  Read about her first attempts in her post "Yoga Cat" and her recent update, "Flying Away".  Merci, Jazzcat!  C'est tres bien!

Kristen, better known as Blogger Mama, shares her discovery of a new type of eye exam which is performed more quickly and is gentler on the patient than traditional exam methods (especially for those who need special exams for medical reasons, such as taking Plaquenil)!  I'll be speaking to my doctor soon about the method Kristen described in her post "Eye Doctor"!

Then there's Julia - ah yes, @JuliaReasonWell on Twitter - who never disappoints!  Enlisting her trusty Cannon camera and accomplice Goldie the Prius, Julia reminds us that we have to make choices but it's ok to sometimes choose what makes us happy.  In her post "Where Julia Went in the Sunshine", she chooses enjoying some of her favorite spots in nature (with the proper precautions for a Sjoggie, of course).  Check it out to see how she balances wants & needs, along with some rockin' photography!

My new friend Tosha doesn't tweet, but does host a Facebook group with the same name as her blog, Bottled Time.  Her post, "I Do Tricks for Treats!: My First Experience with Cimzia for Inflammatory Disease", is quite funny!  While discussing the very serious & important topic of injectable biologic medications, the post is sprinkled with chuckle-worthy pictures & chortle-inducing perspectives.  Don't skip the links at the end of the post - even the descriptions were an endorphin boost!

A woman who claims to actually be capable of "Falling With Grace" - a feat I will never master, as I am a pro at falling but not so great with doing it gracefully - practices a habit we can all do.  As blogger Amy explains in her post, "Word", this tip doesn't require money, equipment, special food, or even much time...just willingness to give it a genuine try.  Now that's a hard one to ignore!

Embracing a similar approach, chronic patient Chelsey started her blog, HOPE - Helping Other Patients Everywhere.  I relate to many ideas in her post "Encouragement and Perseverance", which describes (and demonstrates!) her in-charge mentality for dealing with very intrusive chronic illnesses.  I think my favorite part is the 'conversation' between Chelsey & her illness.  We should all be so determined!!

Bennet Dunlap (@DiabetesMayVary) is pretty unique among our carnival bloggers.  He is the caregiver for his children with Diabetes, one of two male contributors, and one of four contributors I've actually met in person - and, will be presenting with UII at a conference in May on the Digital Patient Bill of Rights, which was developed at the Digital Health Coalition event we did together in September.  In his classic post "What Is Your Goal?", Bennet delves into the questions parents of kids with chronic health issues must ask of - and answer for - themselves.  Bennet reminds us to keep our eyes on the real prize.

How about one more for the road?  Our favorite 'gimpy girl', Bridget, shares her way of staying 'Bridget' despite the best efforts of her aggressive chronic illness.  See how, by "Sewing Through the Pain", Bridget found a way to really leave her illness out the equation (safely).  She's not battling it, ignoring it, or even attacking.  She's simply being herself in spite of it.  And I love her for that:)

"...or Brother"!  Image found on SodaHead, here.

And there you have it!  Lucky 13 contributors with actually 14 posts among them, for your hopeful & healthful pleasure!  These bloggers collectively share an incredible array of tactics for making life as a chronic patient better - physically, emotionally, and even spiritually, and I know you'll enjoy what you find.

Gee, I can't wait for the next topic!!

Lines Are Still Open

I recently put out a call for entries for the first UII Blog Carnival.  The topic for the inaugural carnival is "success"; I'm asking writers to send me their posts about tips, treatments, or procedures which succeeded in making their lives better!

Want to contribute but haven't gotten around to it?  There's still time!

I'm envisioning a telethon drive....
(((Soft effervescent music plays as the camera fades out of Jenny pondering an idea and onto a TV host with  very big teeth, speaking animatedly into a microphone.)))

Pic of the original king of the telethon, Jerry Lewis, found here.

"That's right, increase traffic to your blog, share your tips with other patients like you, meet new people who know what it's like to live with your challenges, AND help support UII - Understanding Invisible Illnesses!  Get all this and more for the low "cost" of contributing a post to the First EVER UII Blog Carnival!


We're getting close to the end of the post drive but you can still be part of this historical moment; the lines are still open!  Just send your entry to Jenny by Friday, March 9 and you'll receive all the thank-you gifts mentioned above!"


I think I've spent too much time reading the posts of a certain other, more creative, Sjoggie blogger.
So, send me your posts to read instead!!

For your convenience, here's all the info again in one spot:

• Send the following info to me at "uii(dot)jennyp(at)gmail(dot)com" by FRIDAY, MARCH 9:
• Your name (or pseudonym)
• Twitter handle (if applicable)
• Name of your blog
• Link to a post which discusses a success (tip or trick, procedure, treatment, anything!)
• The post can be new or old, written for this carnival or for any other reason
• The post should be upbeat, discussing an idea that worked for you (or a loved one), but otherwise this is wide open - any condition, any time, any idea that worked!
• Naturally, I retain the right to exclude any posts that are inappropriate, but that is unlikely to happen:)

Please comment or email me with any questions!  This is already shaping up to me an impressive list of writers, and I'd love to include you as well!  We have some amazing entries so far, and a few bloggers who have promised (you know who you are...).

Pic of security pug found here (b/c mine is always on nap duty).

Great or Small

There is a familiar saying which once seemed trite but now means the world to us.  A saying that was easy to discount in our younger, pre-sickie days but which becomes more and more valid as disease progression marches on over time.
A saying we owe it to ourselves to continue saying.

"Every little bit counts."

Every time we take our meds; every day we apply suscreen; every cup of water we drink; every nutritional directive we stick to makes a difference.  Every precaution and every treatment counts.  Everything we do to help ourselves life a longer, fully, happier life counts.

And, much as we may not always like to be reminded (and I'm the worst offender here), the same goes for physical activity.  Every little bit of movement counts.  Looser joints, leaner mass, stronger muscles, and healthier hearts & lungs are ours for the taking, at some level.

If anyone understands the limitations here, it's this group.  We know what it's like to be too exhausted to stand let alone move around.  Personally, I have so many problems with my shoulders and hands that upper body strength training feels quite daunting.  Somewhere in our heart of hearts, we know there are days where the best thing we can do for our bodies is to do nothing at all.  But these same hearts also house the knowledge that this makes it that much more important for us to do what we can on other days.

Blogger, tweeter, presenter, artist, and smokin' health activist Jenna Visscher (The Feeding Edge) would like us to live out this adage, to spread awareness of the benefits of even the most moderate exercise as well as of the chronic invisible illnesses Ankylosing Spondylitis.

To this end, Jenna has launched a prolific and amazingly easy campaign: Walk Your A.S. Off!

What does it cost?  NOTHING!
Are there any risks?  NO!!
When will I have to change my schedule to participate?  NEVER!!!
Where do I have to travel to participate?  NOWHERE!!!!
What do I stand to gain?  EVERYTHING!!!!!

How easy is this:

• Walk.  Anywhere.  Anytime.  For any duration or distance.  As often as you please.  On your own schedule.  All by yourself or with anyone you like.
• Count your steps (pedometers are easily available by mail order or at many stores near you, sometimes for less than $5 each).
• Record your steps each day starting on March 1 (that's tomorrow!) 

Make your own team, join an existing one, or stand (and walk) on your own two feet.  Every step counts, including all the ones you usually don't consider (walking to your car, through a store, or to get lunch, for example).  Walk less on your tough days and more on your good ones.  Every little bit counts.

Read more about how Jenna got this idea, what the goals are, and FAQ topics on Jenna's site.  Join (or start) a team on Facebook.  Consider how simple it would be to support people living with A.S. by tracking what you do on a normal day or to help yourself.  

Come on, people, this one's a no-brainer.  YOUR every little bit helps, maybe now more than ever.

Ewwy Gooey

When I was little, like most kids, I liked to recite silly little poems.  This was one of my favorites:

*ahem*
Ewwy Gooey was a worm,
And a wise old worm was he.
He sat upon the railroad tracks,
But the train, he did not see!
EWWY GOOEY!!!


*bows*

I think I particularly liked very emotionally & dramatically declaring "EWWY GOOEY" at the end.  It was a very guttural release for a little girl to whom many things were quite icky in every day life.

I'm a visual thinker, and in my little head, the train that gooey-ed Ewwy looked something like this.

Image found here.  Anyone else see a smilie face on the front of the engine?

Like Ewwy, and most of my fellow "sickies" or chronic patients, I sometimes feel as if I sat too long upon the railroad tracks.  Familiar is the tingling of the rails beneath my bottom as this locomotive approaches; unmistakable is the sound of its stern whistle informing me my stubbornness isn't going to stop its progress.  And inevitable is my abasement as I lie on the couch, a gooey mess, knowing had I responded to the warnings I might have avoided or at least minimized the damage.

When hit by this train, I can at least say "well, I should have seen it coming", or "I saw it coming but because of [feeble excuse] I couldn't get out of the way".  Sometimes, I even take heed of the warning signs and move my tail feathers to safer ground!  This train is at least a vocal threat.

Once in a while, though, I find myself blindsided.  I'm pretty sure when that happens, my friendly locomotive above is parked in the station house and this sneaky substitute has barreled down on me.

Photo found here.

Aptly named the "Bombardier", this is one of the fastest trains in the world.  To lowly little wormies like Ewwy and myself, by the time we'd feel this puppy coming it would be too late to flee, and I think his blunt nose would explain the full-body-slam-into-the-ropes sensation that leaves me reeling.  In contrast to the "coulda, shoulda, woulda" retrospective when obliterated by the locomotive, while I can usually think back and identify what sent this sleek liner on its path I can't identify the warning signs that would help me prepare for another confrontation in the future.

The Bombardier and I had one such encounter yesterday.  I can think back over my week and cite the following likely instigators: high stress (personal & work-related) last weekend, 3 hours of sleep Sunday night before rising at 3:30am Monday morning, high physical & emotional stress on Monday taking my parents to the hospital for my dad's surgery, the relief Monday night when everything went well (I usually have my biggest reactions when the adrenaline wears off after an event), high pressure at work trying to finish up some projects, and inadequate sleep during the week.

Before you decide I'm oblivious, I want to point out I had no way to avoid any of these stressors, and that I actually did consider them throughout the week.  I'm not new to this ride, and at each of the above mentioned steps along the way I had the thought "oh boy this is going to be a doozy".  I was looking for the smoke, listening for the wailing whistle, and waiting for the distant rumble underfoot.  And they never came.  One day at a time, I made it through the week.  Tuesday I was exhausted, Wednesday I was focused, and Thursday, I was resigned.  But come Friday morning, I was still worming my way through the day.  I actually woke up a little more easily and powered through several to-do items at work.  In the middle of the week, I had decided I'd block off Saturday for extra sleep and sedentary rest, and it looked like I had made it to the promised land.

NOT.  By the time I got home from work yesterday, I found myself inexplicably smooshed.  All of a sudden I realized I had everything from tingling extremities to debilitating brain fog, not to mention extreme exhaustion, poor balance, and a widespread headache.  Eating dinner took the edge of panic off the situation, but did little else to improve my status.  So once again, Shawn handed me 800mg of ibuprofen (and instructed my fatigue-addled self to swallow them with the water suddenly in my grasp), helped me into my pajamas, and coaxed me into bed after I started to doze off while puddled on the couch.  As an indication of just how thoroughly nasty I felt, my contacts were bothering me so I had to put on my glasses (anyone who knows me is aware this is a bad sign - a very bad sign), which only added to the dizziness.

If anyone sees the Bombardier out and about, let me know where...and stay clear of this most dangerous of transporters.  That sucker means business!

Call for Carnival

(NOTE: blogger friends - please repost, link to, or otherwise share this post with your communities! Thanks!)

Image found here.

Over the past few years, I discovered a favorite way of relating to fellow bloggers - and patients - through blog carnivals. These events are organized periodically by a person or group to showcase many stories or perspectives around a common theme. Bloggers submit their posts on the chosen topic, which are aggregated and presented together as links from one post, providing readers with a directory of great posts by great writers.

This year, I'd like to start UII Blog Carnivals, right here! For our first topic, I draw on a special event in my own life. My dad just had surgery for spinal stenosis, and by the time he awoke from this outpatient procedure, he already had significant relief in his legs & feet from the debilitating pain & cramps his compressed nerves caused.

For the inaugural UII Blog Carnival, lets share posts about successful treatments/procedures that have helped make your life better! It's so easy to get mired in how incomplete our relief can feel, but success stories (great & small) do happen!

Here's all the info & how to enter:

Send the following information to uii(dot)Jennyp(at)gmail(dot)com by FRIDAY, MARCH 9:

*Your name (nickname/pseudonym is fine)

*Name of your blog

*URL of the post to share. The post can be a new post written especially for this carnival, or an older pre-existing entry, as long as it's on this (general) topic!

*Twitter handle (if applicable)

And that's it! If you have questions or ideas for future topics, please let me know! Also, encourage your friends & blogger buddies to contribute, too!!!

posted from Bloggeroid