An Open Letter to Medical Professionals & Caregivers

Dear Doctors,
Nurses,
Patient Care Technicians,
Radiologists,
Laboratory Technicians,
Certified Nurse Assistants,
Hospice Workers,
Emergency Personnel,
Hospital Administrators,
Clinicians,
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.

Sincerely,
21st Century ePatients Everywhere

Some of the coalition of ePatients who drafted the Digital Patient Bill of Rights, shared here.

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."

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!!!

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).