February 29, 2012

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.

February 25, 2012

Ewwy Gooey

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

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!


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!

February 20, 2012

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

February 7, 2012

What It Means to Have Courage

Let's play a game and see how well you know me.  How about 3 question:

  1. What is my husband's name?
  2. Who is my favorite blogger?
  3. What is the name of an organization that makes my blood boil with their reputation for frivolous lawsuits, failure to progress toward their stated (and legally protected) goal, and a myriad of other sins against humanity & all that is sacred about health advocacy?
If you said Shawn, Julia (of Reasonably Well-Julia), and Susan G. Komen, congratulations!  Tell the reader what he's won....

Unless you've been in solitary or playing ostrich with your head in the sand the past week, you've probably heard about the latest pile of fecal matter in which Komen has landed.
The stupidity this time around almost made me want to do this, too.  Image found here.
Komen decided to adopt a new policy for providing funding to other organizations which would disqualify any organization currently undergoing a federal, state, or local investigation - the immediate (and, if sources are to be believed, intended) result was the announcement they would discontinue funding to Planned Parenthood (funding, mind you , that was designated and used exclusively for breast health - exams, education, etc).  However, this action incurred an immediate response from everyone from members of congress to activists and back again, all berating Komen and jumping in to save PP.  There's obviously a lot more to the full story, but there's your nutshell for this evening.

The main driver behind this "policy" was Karen Handel, the organization's VP for policy who joined Komen last year after a very right-wing political career.  After 3 days of beatdowns in the public eye, Handel (finally) stepped down.

Here is a good article about her resignation by the Associated Press that appeared today on the Boston Globe.  It'll just take a minute, go, read.  I'll wait.

No really, I'm waiting.

Go for it.  I'll still be here, I promise.

APNewsBreak: Komen exec quits after funding flap

You read it?  Good.

Here is a quote from the article that I found particularly disturbing:
"Neither the decision nor the changes themselves were based on anyone's political beliefs or ideology," Handel said in the letter. Rather, both were based on Komen's mission and how to better serve women, as well as a realization of the need to distance Komen from controversy.

WHAT?!  Let’s dissect:

A) WHY is one of Komen's goals to distance itself from controversy?!  I thought the goal was "a cure" (oops, hope I don't get sued) and support & education for women.  So they'd let a particularly high-risk group of women (those without the resources on their own for regular screenings & treatment, who go to PP for that reason) go unserved because it could be controversial?  I hope my right to health never comes under fire because I affiliate with someone/something controversial...oh wait, too late. 

B) These decisions AREN'T based on ideology?  Leaving out politics (would have been) right, but ideology?  What are we without our ideals?  If you can't involve your ideals because they conflict with the organization, you aren't in the right organization!  I obviously wasn't a fan of hers from the word "no", but would at least be able to respect her if she was working for what she believed was right.  Now she backpedals and says it's not an ideological decision?  

I maintain a list of quotes that I really love.  They help inspire me, ground me, and convey ideals of my own. And one of my oldest favorites was by Robert Green Ingersoll (read about this inspiring man here).  This visionary man stated "it is a blessed thing that in every age someone has had the...courage enough to stand by his own convictions".  

As we get older we can't help but become a bit jaded.  But there's a fine line between realizing the truths about the world we live in and losing the truths we were born knowing.  Which, in turn, means that if we are to progress as a people we must have as leaders those with both intelligence and integrity, who stand by their ideals.  If we don't agree with their ideals, we shouldn't name them our leaders.  We live in a capitalistic democracy - it's as simple as that.

So, Ms. Handel, I say to you that beyond my pre-existing notions about the Komen foundation, you have served only to further humiliate the organization you joined as well as yourself.  Ideals & morals are pushed so far out of our lives that they are now missing from the times & places when we most need them.  Is our fiber so weakened we no longer have our own beliefs which differ from others?  If the popular opinion had sided with you instead of berating you, would you have laid claim to this policy as being ideological?  If so, I suggest you take this opportunity to re-evaluate yourself and your own courage of convictions.  

If you believe something is right or that something else is wrong, have the cajones to stand there and say so to my face.  Take a hint from some of the most formidable women I know - who happen to be former cancer patients themselves, and have laid into Komen for years for their underhanded, backward ways.  Their opinions were not always popular, but they defended them anyway.  We should all have such confidence in ourselves - even you.