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's...not...allowed...to...move...zzzzzzzzzzzz.
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."