May 29, 2012

My Spoonie Mentor

At my firm, there is a big emphasis on mentoring relationships.  We are assigned mentors, encouraged to pick our own, and look to how we can be mentors to the next generation.  Our interim & annual reviews are held with mentors, and budgets are dedicated to maintaining these connections.  Why have such a sophisticated structure in place to enforce relationships usually developed by happenstance?  Why put so much focus on this entirely human factor in the oilled machinery that is one of the Big Four.  Well, if you ask them, it's because these relatonships are critical to the development of each individual, which in turn affects the longterm health of the firm.

Hm...the passing of knowledge gained through study and experience has a strong impact on health - or vitality, fritfullness, and quality - of our futures.  Sounds kinda like something every Spoonie ought to be doing.  I have mentors at work: one assigned, one selected in addition, and even a few 'off the books' who have taken an interest in me.  But I also have a Spoonie mentor, who I was lucky enough to find very early in my activism.

For those of you who don't know, Shawn and I are on vacation.  Our main destination is in Georgia (which I will post about as soon as I can because it is beyond my best dreams), but due to the prohibitive price of airfare, we decided to drive down & back, staying overnight someone en route each way.  Shawn drove the whole shift yesterday, and briefly when we departed this morning.  Shortly into the drive I took over, and drove for several hours.  However, after roughly 5 hours (give or take) I had to pull over and ask him to switch.  I found myself squinting and blinking extra even with sunglasses (and given my sensitivity, I have at least 4 different types of them in the car and went through most on this drive) and still struggling to see comfortably.  My control over the vehicle within the lane seemed to be loosening, and I was starting to struggle to make sense of signs around me.  It was pretty clear I was fogging over.

As we pulled back on the road, Shawn behind the wheel with a reassuring word that he had no problem doing it, I was starting my usual habit of beating myself up in my head.  I hadn't even pulled as long a shift as I wanted to, let alone after he drove the whole time the day before.  Then I asked myself the question every Spoonie knows and hates: "Did I really need to stop or was I taking an easy way out?".

You know what I'm talking about.  Self-doubt is like a pimple on the tip of your nose - always shows up at the worst time, isn't usually actually your fault, makes you want to hide your face, and only gets worse when you pay attention to it.

But then I thought about fellow Sjoggie & clutz supreme (and she knows I mean that as a compliment), Julia.  Specifically, I remembered a post she wrote about a similar experience.  Not long ago during a visit back home, Julia found herself driving her mother when the Sjoggie brainfog rolled in.  Of course, by definition this thought-muddling experience interfered with her ability to identify & react to the other words, she kept driving despite her impaired mental capacity.  You can read her post for the rest of the details but suffice it to say everyone's ok but more by accident or divine grace than her road skills.

I don't think I needed Julia to tell me WHY pushing it to keep driving (especially at high speeds with cars up my rear bumper and intermittent surprise severe rain) would be a bad idea, but I did need her story to make it sink in.  I would be taking my own life in my hands, as well as countless other people on the road, and most importantly Shawn's.  Suddenly, I felt relief.  We had defeated the ugly self-doubt monster and let me know it was not only ok but back-slap worthy of me to invoke the switch.

It's not the first time Julia's been my mentor - sometimes knowingly (answering my myriad of questions ranging from vitamins to managing blog stresses to family and everything in between) and sometimes unwittingly, through her stupendous blog.  I know for a fact she's also mentor to many, many others, even if she doesn't know exactly who and when she's helped.

In all seriousness, I am grateful for Julia.  I'm glad I found her blog, even more glad I reached out to her, and ecstatic that she wrote back.  Maintaining this relationship is almost effortless for me and reaps so many rewards.  If nothing else, there is so much comfort in that resilient voice reminding me it will be ok - not necessarily as I thought it would be, but still ok and I'll be happy.  I encourage every one of you to keep an eye open for the mentor - or mentors - in your life.  Whether there's someone you already know or will meet in the future, there's bound to be a person with whom you can connect and get the support you need.  It's a rewarding experience that I wouldn't trade for anything, and so I wish you all the same gift!
Learning from those who walk before me, like the beauties in this image, found here.

May 23, 2012


Fire is a life source.  We all know the cliches, about how fire transforms, it creates and it destroys, it changed human existence and in fact the world forever.  It is huge and yet it is nothing; it has no substance.  It is terrifying, but it is also beautiful.

But fire also dies.  Fire pits, bonfires, even expansive forest fires will eventually burn out.  Nothing lasts forever, not even fire.  And yet, we can always start fire anew.  Sometimes it even restarts itself.

©2010-2012 ~persistentgloom

When a fire "dies", it still retains a tiny bit of life.  Embers can survive even buried beneath debris for days.  All it takes for an ember to bring about the life of a fire anew are the right circumstances and some scraps - wood or material otherwise considered worthless - which are known as kindling.

Image found here.

We humans are fire.  We destroy, we build, we leave nothing untouched.  We eventually run out of fuel and sometimes it appears we've lost the passion that drives life...but we don't truly 'die'.  We are more than raging, uncontrollable flames - we are also embers, waiting for the right kindling.

It's been a long time since I've posted.  The demands of my job, trainings, and some scattered projects have taken their toll, on top of which the springtime (formerly a favorite part of the year) has become the worst for my overall health.  The wildly fluctuating temperatures coupled with seemingly endless rain & humidity play games with my physical being.  Coping with all these forces as well as plain old exhaustion and has left me drained.  

In a webinar I did with WEGO Health on "IRL Activism" (In Real Life), I was asked to summarize a few of the lessons I've learned into tips I could share.  One of the biggest hurdles I face in common with my peers everywhere is burnout, and I was asked how I cope with that.  The best I could offer is to let yourself be burned out.  Give in to the void.  Just as you would switch gears to cope with physical pitfalls, you must also allow yourself to heal from emotional, psychological, or even spiritual ones before pushing back into the grind.  I think, perhaps, it's not a coincidence this is called "burnout" (though, I swear it was a coincidence that I ended up saying it in this post - it's one of those posts unplanned, which gushes out of me unaffected by my urge to organize).  This 'burnout', like a dying fire, is full of embers and if you can be patient and observant, you will find your kindling.  Your fire, passion, will burst into new life, almost of its own accord.
(Although, I certainly didn't say it with this finesse...maybe I should ask for a transcript revision;).)

I think I'm finding my kindling.  I am not dead; my passion, my activism, my dreams, and my life are not dead.  I've just been stuck for a while on "smolder".  But tonight I felt a scrap of kindling fall in my lap and catch, warming itself as well as the world around it, and now eager with the potential to show its full force.  I just might burst into flames.  Tomorrow I will finally get to wear my Walking Gallery jacket for the first time. In 12 more days, I'll not only get to wear it again, but do so besides dozens of other exhibits in this gallery and the mastermind herself Regina Holliday, when we form a true Walking Gallery in DC.  The thought went through my head "I don't know which I'm excited about more"...and my embers glowed.  I'm ready at long last to explain the Gallery and my story depicted in my jacket, "The Picture of Health".  And I'm ready to burn up the web by resuming my blogging.  It's been a painful month since my last post (again, I swear that was coincidental too) and writing again really feels like I've come back home.

I'm glad to be back, readers, and hope you're ready because I can feel the impending blaze.  It's going to be a beautiful thing.
Image found here.

April 23, 2012

Some Hypochondriac I Am!

When I was little, they said to my mom:
"She's attention-seeking."
"She's trying to get out of class."
"Does she only seem sick after she's spent time with you?"

As I got older, they said to me:
"Just because your parents said you have arthritis doesn't make it true."
"There's a difference between out-of-shape and sick."
"If you tried to make yourself floss your teeth wouldn't have so many problems."

While becoming an adult and with diagnoses - names - for what I had, they said still:
"Must be nice to get these breaks."
"How convenient that you got sick before the due date."
"You don't look sick to me."

Even as an independent woman, diagnosed a decade and engrossed in health activism, I've been told:
"I just don't buy it."

You probably didn't know, dear readers, but I'm a hypochondriac.  I must be.  What 20-something predicts weather fronts from joint pains; what teen really gets sick around major assignments that caused a great deal of stress; what 3rd grader wears long-johns to guard their arthritic legs in the cold.  Who gets sick, after all, from eating first thing in the morning - and getting your head wet absolutely cannot lead to a cold.

I guess there's no scientific basis to some things I'd been told.  It seems bones aren't made of porous materials that swell & contract with changes in humidity & pressure much like wood does.  Stress doesn't affect your immune system or trigger flares.  Everyone knows that arthritis checks your birth date to see if you're 'old enough' before causing pain, and a the drop in body temperature from the evaporation process of a wet head coupled with an already defunct regulatory system doesn't leave your body susceptible to illness.

Even my behavior couldn't cover my lies.  Being a top student didn't fool the staff in my schools who knew I was just trying to get out of classes & assignments.  My doctors may have been deceived into giving the diagnoses they documented in letters, but these teachers, school nurses, & staff members could not be so easily duped.

But it turns out I missed so many symptoms.  Some hypochondriac I turned out to be.

I didn't know that the pop & crackle of my joints could be played off as tissue damage.  I had no idea the inside of my mouth where the inside of my cheeks are so dry that tongue depressors hang on for themselves & the flesh appears matte would be a great excuse for my frequent dental carries.  Imagine how much more I could have claimed if I knew my excessive reaction to mild exercise with a pulse that jumps & thorough fatigue afterward could be claimed as signs of a disorder, that problems swallowing are frequently attributed to several conditions, or that my laziness could be titled "brain fog".  I'm getting a little better, though...I know that the problem I noticed lately where I randomly have trouble with my hands in doing tasks such as jotting down a note for someone might be passable as complications from Sjogren's & Fibromyalgia.

It's such a strange feeling when I realize retrospectively that a personal habit or mannerism I've developed over time might actually be claimed as a medical malady.  Sometimes I go for years without coming up with the claim.

I'm really going to have to step it up if I'm going to be the hypochondriac I know I have inside.

Image found here.

April 16, 2012

Mommy's Home!

"Oh boy oh boy oh boy Mommy's home Mommy's home MOMMY'S HOME!"
Photo of my Shmoo-butt, my own.
Dogs really are great for the soul.  Unquestioning loyalty, the ability to love you as though none of your faults exist, and enough slobber for a million puppy kisses are among my favorite traits.  Few people can make me feel as valued as she does.  While always happy to see me even just after a day at work, my Scarlett (aka Shmooie aka Shmoo-butt) was particularly thrilled Saturday evening when my brother brought me home from my 2 1/2 day stint in my parents' care.

A little over a week ago, I backed into the corner of a set of drawers (very delicately, I assure you).  A few days later, I started experiencing intense pain along with bruising & stiffness, consistent with a bruised coccyx (that's a tailbone for anyone a little less posteriorally-focused).  I did my due diligence as an ePatient: trolled the internet - attempting to sort lore from fact, of course - spoke to others who had gone through this experience, and monitored the progression of my symptoms, and concluded it was a badly bruised bone.  Painful, but not much to be done.  Against the concern that I might have broken it and should have it x-rayed, I insisted it wouldn't matter anyway, as the care plan was the same.  This may have also been colored by my less-than-stellar insurance.

Then, this past Thursday I had even more pain (if that were possible), and when I got home from work found that I had bled through my clothes.  Even I can't ignore a problem like that.  So the Daddy Ambulance picked me up and took me to the new urgent care facility in my town (side note- they were less expensive than the emergency department, had no wait, and were closer which was pretty important when I was in quite a bit of pain in the car).  There, I found that I actually had a cyst which seems to have ruptured internally from the hit I took a week prior, and had finally now ruptured externally.  Oh, and the site had developed an abscess (an infection).  I'll spare you the ick, so here's the tame version of the next steps: the PA (physician's assistant) had to perform a minor (yet fully embarrassing) procedure where she made a small incision and tried to rid my of as much of the problem as possible.  For the next few days, I had to follow a few directions to finish getting rid of all the bad stuff, and now I'm onto healing.  She gave me prescriptions for an antibiotic and a pain killer.

A quick side story my chronic patient friends will appreciate: So after going through all my medications & what they're for, diagnoses, how to spell them, and what system they relate to, I'm lying there (on my stomach) listening to what is wrong and how we'll fix it.  Once we agreed on the plan, I had to start sharing my insights.
"You're going to inject something to numb the site?" I clarified.  "Yes," answered the unsuspecting PA.  "Ok, well I don't know what you were going to use, but I can tell you the dentist has had to stop using anything with epinephrine in it because I have a reaction."  "Um, ok," she smiled, "we won't use epi on you."  "Great," I said, then continued "and the antibiotic...I don't know what you were going to prescribed, but I can tell you amoxicillin doesn't touch me".
Hey, if I know it's not going to work, why not save us all the time, right?  But boy does that reveal a lot about my history as a patient!

Naturally, I couldn't care for myself on all these meds and with a fresh incision, and Shawn was out of town attending (ironically) the national student nursing association convention, so my parents turned their house into my own personal hospital ward.  My dad gave up his side of their temperpedic bed since it would be better on my battered bum, my brother dog sat at my house each night, and my mom catered to my ever-evolving dietary requests.

Adding to the fun, the antibiotic she prescribed me (and I believe it's my own fault - I told her not to use amoxicillin after all) ended up DESTROYING my stomach.  Each dose was worse than the one before, and by the 4th round (24 hours of the med) I was curled up on the floor crying.  My stomach was distended, I was nauseous, could barely eat, and was convinced I was dying.  Turns out this med was a particularly brutal antibiotic, but since I had warned her of my resistance the PA reasonably thought it would be a good way to go.  So my mom called the PA back and they came up with another med for me to try.  Even just the knowledge that I didn't have to take the first one again was making me feel better.  Just to be safe, I'm also following her instructions to eat a yogurt with each dose & taking a probiotic daily, and on the whole it's working out.  I also found chocolate flavored Boost goes down well when nothing else will, and alternating ginger ale with root beer pretty much handles the rest.

Shawn was getting home late Saturday night, so my brother brought me home in the evening since (as my mom says) my personal home-care nurse would be arriving shortly.  While my brother's companionship kept Scarlett from full-blown insanity, nothing makes everything quite right like having Mommy home - hence her outburst at the beginning of this post.  After ambushing me with kisses and squiggles, she anchored herself at my side on the sofa.  No chance of Mommy making another getaway!

No, no way.  Nuh-uh.  Not...gonna...happen....  Mommy'
Picture of my sleepy - yet surprisingly on-guard - protector puggy, my own.
Shhh...goodnight, all!  May you snooze in good health!

April 10, 2012

An Open Letter to Medical Professionals & Caregivers

Dear Doctors,
Patient Care Technicians,
Laboratory Technicians,
Certified Nurse Assistants,
Hospice Workers,
Emergency Personnel,
Hospital Administrators,
Alternative Medicine Practitioners,
Home Care Specialists,
and related Office Staff & Managers:
Image found here.

On behalf of my fellow patients, thank you for doing your jobs.  Thank you for going through years of additional schooling, periods of shift-work, and becoming nocturnal when necessary.  Thank you for dealing with icky and/or scary things for a living and assuming at least partial responsibility for us when we aren't able to do it for ourselves.  On the whole, we are grateful for you and all you do.

But even the best in your profession can lose their connection to their patients as people, with pride, self-respect, and dignity.  Whether you're new to your role with a freshly printed certificate in hand, haven't had personal experience coping with illness (or seen a loved one do so up-close), or are an experienced leader in the field who's been doing this so long you've begun seeing patients as experiences and not people, it happens.  So you may need to be reminded from time to time.
Image found here.
It's human nature (including both you and me) to complain.  Even when we love what we do, we can't help but gripe about a few things - gossipy coworkers, the dreaded paperwork, mandates from superiors which seem oblivious to the work already on our plates.  And when our jobs require us to interact with people on the "outside", we're going to get frustrated.  As an auditor, I've had my share of client experiences that feed grousing, and I know patients can be just as challenging to you.
Frustration depicted here.

It's true that without patients, you wouldn't have a job.  While that may be reason enough for some professionals to be patient with patients, it's not a good enough reason.  I don't want your consideration because you need my business, I want it because I deserve it and you're trying to sympathize with my experience.  Troll patient conversations on the internet and you'll find many patients who stay with a provider that may not be the most renowned in their field because he or she treats the patient with genuine concern.

I have but one general - and honestly, fairly simple - request of you to help make this relationship work.  Whenever you're frustrated with a patient, trite as it might sound, put yourself in their shoes.  When a patient is fighting about a bill, imagine having to find the money it takes to maintain a basic level of health.  If you find yourself repeatedly prodding a patient to stick with an ongoing plan (diet, testing, whatever), imagine having to revise your entire schedule to fit in such a plan including running errands caring for a family, and meeting the demands of a job & other commitments.  And, based on a real conversation I recently had, if your job requires you to do unglamorous tasks, imagine needing to have them done for you.  Before you complain that you literally have to wipe a patient's butt, imagine having to have someone else wipe your butt for you.

The key here is "have to"; your patients aren't choosing to have their butts wiped, the choice was taken from them.  Against their will, they must have someone else help them in this most basic & private of tasks.  Wouldn't that make you rather cranky?  Doesn't shame often manifest as orneriness?
Not all patients are elderly, as seen here.

A few years ago, I was going through a flare.  Lying in bed, I just wanted to scooch up toward the pillow but felt too weak & achy.  My ever-loving husband came around the bed and started to grab hold beneath my arms, as you would a child begging to be picked up.  I pushed him away and asked what he was doing, and he said "I was just going to move you up in bed.  I do this for my patients all the time".  But I couldn't let him do it.  I was just in my early 20s, totally unprepared - and unwilling - to need someone else to help me move a few inches in my own bed.  Today, I had to deal with a particularly embarrassing issue, as I had managed to injure my tailbone last week.  Over the interceding days, it has developed a bruise & the muscles are quite disturbed.  After 24 hours of unceasing pain, I finally let him apply a topical analgesic to the injury...and I was none to thrilled to have to let him do this.  My poor husband could very easily complain to his friends that he even has to tend to his wife's backside problems...but I have to live with the emotions of needing someone to do this for me.  How would you feel in my shoes?  Would you be able to accept this help with grace & a smile?
Smiling patient who must be getting compassionate help from his spouse found here.

How would you react to a diagnosis of a severe and/or chronic condition?  To being told to change your lifestyle?  To finding an entire portion of your budget must be allocated to known medical expenses (not to mention the indefinite costs that could accompany an unexpected issue)?  To a professional who tells you he or she knows what's best even if you don't understand or agree?  How about to needing to do daily blood tests, or report your diet & habits to a practitioner you've only seen 2 or 3 times before in your life?

These are directives you give your patients all the time, wondering why they find it so hard to follow your simple instructions.  You've had the hard work, after all, of sorting through the symptoms & options to come up with these plans.  Why are we so ungrateful for your hard work & wisdom?

Because our health is the thing in our lives over which we feel the least control and yet the most effect.  We are the ones who have to find a way to implement the plans you create.  We are the ones who have to acknowledge the loss of our own privacy & independence.

In a true provider - patient team, we will appreciate what you can offer to us and you will appreciate the experiences we will face in trying to implement it.  How would you have your caregiver manage your care with you?  Maybe we aren't such dissimilar creatures after all.

21st Century ePatients Everywhere
Some of the coalition of ePatients who drafted the Digital Patient Bill of Rights, shared here.

April 1, 2012

I Didn't Like the Alternative

I've been combing the internet for a quote that captures a particular concept I have in my head.  In the process, I found several excellent expressions, such as this twist on a classic - "Courage is not the absence of fear, it's knowing that fear gets you nowhere" - and this definition - "Heroes are the people who do what has to be done regardless of the consequences".

William Faulkner pointed out that "man performs and engenders so much more than he can or should have to bear.  That is how he finds that he can bear anything", which is getting a little closer to my point.

Dancing around ideas related to the thought I'm trying to express, Josephine Hart warned us that "damaged people are dangerous.  They know they can survive," and John Updike wisely commented "we do survive every moment, after all, except the last one".

These are great motivational statements that serve to encourage us in the face of adversity and, sometimes, to remember humility is the great equalizer.  And yet, none of them quite hit my nail on the head.  None really say what I want to say; my persistent work with the 'Google machine' returned no perfect results.  So I guess I'm going to have to say it for myself.

I've noticed several other bloggers and activists discussing a topic familiar to us all, this is, how to answer a certain question we are asked by the "healthy" people around us.  This question comes wearing many disguises but ultimately - like the pierogie, ravioli, and potsticker - they are of like-substance:
How do you do it?
How do you have all that energy?
It's so great you can do everything you do (this thinly veiled statement-question can be particularly caustic to our nerves, by the way).
I don't know how you got through [insert medical disaster here].
I'm amazed at how you do all the things you do even with all your medical problems!
I wouldn't be able to do what you do.

I know these are (mostly) well-meaning, even complimentary statements.  Expressions of support and admiration from those honestly trying to be supportive.  But they drive me crazy.

I didn't do "it" (whatever it is) for you to admire.  I wasn't trying to impress.  I wasn't even trying to win some competition, or prove something to myself or anyone else.  To be honest, I would just as well have never done "it", but that would depend on never having needed to do "it".  The only alternative I could see, the other option besides doing "it", was to stop living.

I did it because I simply didn't like the alternative.

I don't know how I would survive many things others got through - living in concentration camps in WWII, or surviving weeks without food besides the occasional bug as they often must do in war-torn countries around the world.  But I do know how they did it.  They didn't like the alternative either.  Really, there was no alternative but to drop dead on the spot.  Maybe they'd end up dead from the experience anyway, but they had to try, and many people did survive.  There's even positive things I don't know how I could (or will) survive but I'm going to do them anyway, like having a baby (the actual birth part of it...blows my mind).  But I don't like the alternative - not having babies - so I'm just going to do it.  As have billions of women since time immemorial.
This is Noah, who had a heart transplant at 10yrs old.  I don't know how I'd survive needing a heart, getting it, or being the parent of a child need one...or donating it.  But I would, because the alternative isn't an option.  Image found here.

Maybe I am strong, as so many people like to tell me.  But if I am strong, it's not because of what I did, it's because of what I didn't do.  I didn't pretend there was another more attractive alternative which didn't really exist.  I know people who do this, and all it accomplishes is shuffling the responsibility while still leaving them worse off than they began.
Cartoon found here.
So if you're like me and so many of my friends, the next time someone asks you
"How did you do 'it'?"
you can tell them
"I didn't like the alternative."

March 21, 2012

Take a Hint, Already!

We communicate with each other in many ways.  Verbal or nonverbal; blunt or sarcastic; written words or images.  We pass notes, sing songs, and pat each others' backs.  Nowadays, technology aides our communications - and I'm not talking about emails.  With a tap of the smartphone we send "smilies" and with a click of a mouse we share entire articles & websites through Facebook, Twitter, and Google+.

In this complex environment of the human society, we often use hints to convey our thoughts.  A glare to let someone know they crossed a line, or perhaps a piece of gum offered to resolve unfriendly breath.  

Sometimes, these hints aren't enough, and we are forced to take more obvious efforts to elicit a reaction from another person.

On the whole, I consider myself an adequately observant and perceptive person, able to effectively function in society by interpreting social hints.  But I know I'm not perfect, and occasionally miss the obvious.  Alas, it seems I recently have failed to take a hint, and thrice failed to attend to the hints of some of my most esteemed colleagues.  

I must, therefore, apologize to Julia, Jazzcat, and Pamela.  When Miss Julia gave me a hint on March 2, I was moved but stretched too thin to react at the time.  Two days later, Jazzcat attempted to remind me of the hint, but I had yet to get my life quite in order and then, well, it just kept slipping my mind.  Two days ago, Pamela issued me the final warning, and I figured it's time I take the hint, already!

And so, I'm honored & humbled to accept - three times over - the Liebster Award!

According to my benefactors, this award is given blogger-a-blogger to someone with less than 200 followers who the giver feels deserves some special recognition, and serves as a way to build a network of high-quality blogs & bloggers.  Pamela added an explanation of the award's name & message:

The Liebster Award takes its name from the German word meaning 'Beloved, Dearest, or Favorite'.

I'm so, so touched to think I might be so loved:)

And so, I share my love with a handful of my beloved fellow bloggers.  In keeping with the spirit of the award, I will select only five recipients, none of which will be those who have already shared this honor with me.  Not an easy task, as they are some of my all-time favorites!

  1. Let's start with one of my oldest favorites - Jen Daisybee.  Jen blogs at "Suicidal No More" and is one of the most consistent defenders AND educators for all things mental-health related.  An advocate in the truest sense of the word, Jen has guest-blogged for me, presented at countless live events, and is unrelenting in her quest to fulfill her own personal growth needs.
  2. From a classic to a recent find - my next choice is Elisa.  I am glad to have found her blog, "Sjogrens Style", which lives up to its name by covering everything from 'flare wear' to 'how to fashionably wear a logo tee' (perfect for those of us who like to sport our Sjogren's Walkabout shirts).  However, there's more to this blogger than clothes alone - including discussions of treatments, innovations, and life with a chronic invisible illness.
  3. What's the point in having family if not to indulge in nepotism - I'm also choosing my brother, Jon.  His blog "The Aspie Epilogue" will bring you to new considerations and insights, whether dealing with a diagnosis on the Autistic Spectrum or not.  However, I can't stress enough that there is something more here than the sum of the words.  The way this boy (in my head, he'll forever be 10 years old) writes blows my mind.  It seems in writing he can achieve clarity of expression in ways even beyond his hard-earned social skills allow him verbally.  Listen not only to the lyrics but also the melody in these posts to get the most out of them.
  4. I can't forget Maria, who authors the blog "Going Down Swinging".  Another shining example of what a bit of old-fashioned stubbornness can achieve when coupled with self-education and common sense, Maria takes us with her on her ride through this crazy world complete with successes, set-backs, and lots and lots of smiles.
  5. To be honest, I'm not entire certain just how many followers my last choice has, but I couldn't bear to skip her.  Tosha, who blogs at "Bottled Time", is one of my newest acquaintances.  We were 'introduced' when she entered a post for the first UII carnival, and I'm quickly falling in love.  Tosha's voice is very special and I suggest you join me in getting to know her better.
So there!  Go!  TAKE THE HINT, and share the love!!!

March 10, 2012

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!!

March 6, 2012

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).

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.

January 29, 2012

Sometimes You're the Pooper Scooper, Sometimes You're Just the Poop

Forget the dog, I know a few people I'd like to train to clean up after themselves...
Image found here.
I apologize in advance but sometimes you just gotta tell it like it is, and sometimes it's shit, and a little "s" with a bunch of symbols after just won't do!

We all want to be needed.  We want to be important, valued, and respected.  We want people to seek our advice, ask our opinions, and describe us as reliable.

But being needed has its drawbacks.  Sometimes it's enough to try to keep our own lives on track without having other people bring us their problems to fix.  When we're staggering under our own loads, it can be difficult to care about someone else's seemingly trivial woes.  Other times, we may want to help but simply don't know how.  And yet, if we've established ourselves as responsible people we're going to be the ones held responsible for fixing things.

That's right, the other side to the warm fuzzy of "being needed" is catching shit.  Scooping the poop your friends, family, and colleagues drop as they pass through life.

Wanna know the truth?  I actually don't hate being the pooper scooper.  At least, most of the time.  I like being the problem solver, and especially if the other party is engaged in what the solution is so they can handle it themselves the next time, it can be quite rewarding.  True, there are times the glamour fades, but on the whole it's really not so bad.  Lately I've more often been in positions to catch shit at work, scooping the poop for my client or team, but that's as it should be.  Moving into my new(ish) role means dealing with that but also a lot of authority & opportunity, and if I scoop well I get a pat on the back at least.  So, suffice it to say I generally don't mind being the quicker picker upper in my world, though every once in a while I can get a little wearisome.

Then, there are the days the whole game flips.  For me recently, these days are the ones where my ass is dragging as I try to fight through my day until it finally dawns on me that I've changes roles from the scooper to the poop itself.

If the urge to be needed is common to the human experience, the dread of being life's poop is common to the chronic patient experience.  We try to avoid it, but know deep down there will be those days where it will happen; when we will be described by the same adjectives used for poop: icky, gross, waste[d], even smelly.

When that happens to me, I've decided that means it's my turn to be the poop and someone else can be the scooper.  The best way I can try to help other on those days is doing what I can to help myself so they don't have to cater to me as much.  Shawn knows what I mean - on a 'scooper' day, I might run some errand, decide what to do about dinner, or deal with the dog when she barks at nothing.  On 'poop' days, he'll have to do all that so if I can at least settle myself on the sofa with my usual accouterments (tissues, liquid, something to nibble on) he won't have to cater to me as much.

This gives me a new idea for a new way to track my general health over time - I think I need a calendar, on which I can put a sticker corresponding to how I feel: a strong, shiny pooper scooper or a steaming, heaping pile of dung.

Did you realize that poop is a noun referring to excrement, but also a verb synonymous to exhaust?  A coincidence...I think not!

Happy scooping, fellow Sickies!!