Let's Get Real

Warning: This post will contain a no-holds-barred description of my recent appointment at my fertility clinic.  While I promise no graphic pictures, I cannot promise that descriptions of certain events won't be a bit blunt.  Reality can be shocking, funny - and more than a little ridiculous!

I attend infertility support group meetings with an inspiring group of women, and it struck me as a little funny when the conversation on several occasions turned to the role we often assume as educators.  In other words, I found myself in the midst of a troop of health activists who use their experiences with an invisible battle to educate people around them, begin to remove the stigma, and let other people with these hidden challenges know they are not alone.  Funny how life works, isn't it?

In our self-assigned role as awareness activists, we are finding some joy and purpose in the chance to share what this journey is really like - both the good and the grotesque - and when possible to do so with humor and hope.  So I want to share some of my experiences with you.  I'm sure the things I describe will be quite familiar to more of you than we'd like to admit, and for others it will expose you to the world where 1 in 8 couples will find themselves for a time.

Generally not a fan of seeing all the equipment laid out...maybe that's just me.

Every doctor / clinic will do things a little differently, but there are many tests and procedures commonly performed in the fertility community.  The other day I had the misfortune opportunity to experience two I hadn't been through before: a mock transfer and a saline sono.

The mock transfer was performed first  I was instructed to drink 32 oz of water one hour before my appointment to ensure a full bladder (insert panicked "are you serious" face here, because that's what I made when I got these instructions).  It seems for this test they use a long catheter through the cervix as if they were placing an embryo guided by an abdominal ultrasound, and they need your bladder to be full so they can distinguish it from your uterus.  Not being a fan of any test that involves a speculum, my primary concern was how I could relax one set of sphincters to allow the speculum while keeping another set engaged to prevent a urinary blowout on the table.  I promised you an honest recount and a brutally honest one you shall have, people.  This was the test I dreaded more, and to be honest it wasn't nearly as bad as I had anticipated.  Perhaps the suggestion I read online was true, that focusing on not peeing during the procedure helped distract me from the activities themselves.  I'm not looking a gift horse in the mouth, especially since this was a test-run for a real transfer so I will obviously have to go through this again.  I do have a theory, though, that this test is really to see if you're prepared for all the bladder pressure you'd face during pregnancy because holding a full bladder while having things inserted vaginally AND someone applying external pressure with an ultrasound wand was a bit tricky.

Then came the saline sono.

Say hello to the transvaginal ultrasound.  While the tests I'm describing might be more relevant for more advanced ART (assisted reproductive therapies), the transvaginal ultrasound is pretty common right from the first few infertility tests.  You get used to it quickly.  And yes, they use condoms as sheaths - hey, why reinvent the wheel, right?

For this test, after getting to relieve myself (THANK GOD), I re-positioned on the exam table and they brought back everyone's favorite gynecological tool, the speculum.  After inserting a different catheter with a balloon attached to the end, the speculum was removed so that saline could be gently pumped into my uterus, expanding it for a better view.  They then used a transvaginal ultrasound (because, as the NP commented, there clearly isn't enough stuff going on in that region) to view the uterus and look for any physical / structural issues.  To keep the catheter in place and as a frame of reference, they inflate the little balloon at the end...and ladies (I assume most gentlemen have passed out by now) that is when the pain hit.  It was a very specific spot, I could point with my finger to exactly where it hurt, and it felt vaguely like someone driving an ice pick through my abdomen several inches south of my belly button.  This will vary a lot person-to-person but for me this was clearly the worst part of the visit.  My husband was present with me and poor boy almost lost his hand for me squeezing so hard.  You can watch the ultrasound images as the test is being performed and they'll happily describe what you're seeing.  This is usually something I do and definitely something I recommend - not only do you become more educated about your health, body, and treatment but it's also distracting - but this time I couldn't even open my eyes long enough.  Apparently they did see a small "blip", a white mark, which could be a small adhesion, a piece of tissue that just wasn't flushed out after my last period, or most likely, a small polyp.  Most women get these from time to time, and it's easy enough to deal with, but we needed the doctor to review the pictures and weigh in.  After the exam was over and they had all the images they needed, they removed everything and cautioned me that I would feel some of the saline drain out - yet another glamorous moment in my muck toward motherhood.

To be fair, I should qualify my description of the experience a bit: I did not scream or cry, and I wouldn't even describe this as the most painful experience of my life.  Also, once the procedure was over the pain subsided fairly quickly (yes I had taken ibuprofen prior to the appointment as suggested and yes, I took a little more afterward).  My biggest issue was that I had quite a bit of adrenaline flowing through my system between the pain and my anxiety about the whole visit, and I started shaking.  The NP and the medical assistant were cool about everything, they had me stay lying down for a bit after we finished, took my blood pressure, and got me some water.  It took a couple minutes but eventually the shaking subsided.  That's when the MA commented that my color was returning and after she stepped out again my husband informed me I had blanched to an unnatural shade of Clorox white even for my usual pasty-assed self.  While sitting up now sipping water, I asked when exactly I went so pale and he answered, "when they inflated the balloon".  I guess that struck me as funny because I laughed...and when my abdominals contracted it forced out some of the remaining saline.  Before I could stop myself I turned to him and blurted "YOU MADE ME SQUIRT"!  I must say, I hadn't seen him laugh that hard all day.

And that was my evening of IVF work-up tests.  I told you - shocking, funny, and more than a little ridiculous!

2015 Sjogren's Walkabout

Team UII at the Philly SSF Walkabout

At last it's here, it's finally SPRING!

What fun and joy will this season bring?

There's flowers and sunshine, and lots to do.

But the most fun of all will be at the Zoo!

So check us out and join our team;

The funds you help raise will support our dream -

To live a life where we more than cope,

Where we laugh and love and are filled with hope!

What: 11th Annual Walkabout for the Sjogren's Syndrome Foundation

(This is my fifth year on the committee for this event!)

When: Saturday, May 2 - Registration opens at 8:30; step off is at 10:00AM

Where: Philadelphia Zoo (for those in the Philly area - if you aren't nearby, please consider donating, and check the Sjogren's website to see if there's an event in your area!)

How: Donations can be made online or by contacting me.  Qualify for FREE ENTRY to the Zoo for the entire day by simply raising at least $10 per family member (ages 3 and up)!  

For details on earning FREE entry and how to make donations, visit my team page at here: 

Team UII - Understanding Invisible Illnesses! 

Please remember to invite your friends and family!  You can share this post via email, Facebook, Twitter, Linked-In, Google+, etc.  Or, sign up for the walk and send your personal page around!

What is Sjogren's?

Sjogren's Syndrome (pronounced "SHOW-grins") is the second most common autoimmune disease in the US, though it is dramatically misunderstood.  In this disease, our bodies attack themselves, especially moisture producing glands and connective tissue.  While the most common symptoms include dry eyes, dry mouth, fatigue, and chronic pain, Sjogren's can affect every system in the body.  It is chronic and progressive, meaning there is no cure and it will usually get worse over time.

But the SSF (Sjogren's Syndrome Foundation) is working to change all that.  The Foundation has recently cut the average diagnosis time from 7 years in half, and is continuing to work on making that even shorter.  They also:

• Provide resources to patients, family, and healthcare providers,
• Host an annual Patient Conference,
• Publish materials,
• Raise awareness among the healthcare community to drive interest in this pervasive disease, and 
• Fund research into effective treatments and possible cures!

The Philadelphia Walkabout is the Foundations largest fundraising event in the country!

Sjogren's By the Numbers:

• An estimated 4 MILLION Americans have Sjogren's
• 9 out of 10 patients are women (though both men and women can develop the disease)
• Sjogren's patients are at a 44X greater risk of developing Lymphoma
• Sjogren's patients need an average of 50 TIMES more dental work
• The average age at diagnosis is between 40 and 50 years of age (but it can occur at any age - I was diagnosed at 15 with symptoms beginning at 2 years of age)

Learn more about Sjogren's and the SSF at www.sjogrens.org. 

What's It All About, Anyway

We have a lot of expectations in (and of) this life.  

For many of us, those expectations include having kids and building a family.  Obviously, this has been a topic of great importance to me lately, for at least the last 20 months of trying to conceive at a minimum.  At the outset, I had some pretty basic expectations of the stages involved, and what choices or options or components there might be with each one.

This is your first glimpse into how my brain works, isn't it.  Yes, I think in flowcharts, lists, and graphics - so what ;)

That was pretty much how I thought it went for most people, for quite a while.  It was my impression growing up and through the first several months of trying.  But maybe a year ago, I began to learn that a whole lot of people - including us - have to consider a few more things.

Oh yes, for those of you who may not have had the opportunity to explore things at this level, it's just a bundle of fun.  I'd like to add that the monitoring accompanies just about all parts of this process, unless you're fortunate enough to sustain the pregnancy and graduate to abdominal ultrasounds.

But what happens when it doesn't work?

This is when the questions start that have no answers, such as what method is most likely to be successful?  Or the most painful question, why?  And one of the hardest - what does moving on mean for me?

It's within this last box that I've been living.  What do I do now?  Do I keep trying?  If so, which methods are open to me, and which can I handle?  What if I run out of options?  What if I simply can't handle this same path anymore?

And most recently we've confronted the question of what's it all about anyway?  What is it we're really after and why?  It is these answers that are setting us on our next leg of the journey.

Shawn and I are seriously looking into adoption.  But as we discussed today, it's not because we've exhausted everything else, that we think this is the "only way" to have a family.  And we don't care for it when people act like that's why we'd make this decision.  We are genuinely excited at the prospect.  Bringing someone into our family through this process is going to be a great, if trying, experience and this new aspect of how our family will unfold gets us going.  The way we see it, I have other options.  I can continue the treatments I've been doing, for instance.  But the other day I had a realization.  All along I've wondered if I "should" have kids, knowing what I could pass on, and if that's a reason at a bigger-picture level for why it isn't working.  What if the issue isn't so much - or entirely - what I could pass on but what the process might do to me?  Once you get into the heavier treatments, you put your body through a LOT.  Otherwise healthy women struggle with the chemical manipulation, physical restrictions, and side effects of the treatments on their bodies.  You have to trick your body into doing things, even into thinking it's pregnant so it won't reject the baby.  As someone with my kind of complex history, how will my body endure these experiences?  If I do manage to successfully "fake it 'till I make it", I'm almost guaranteed to have a major flare afterward, and as we all know we can't predict the lasting effects of these experiences.  What could this do to me as a mother?  And what would it do to Shawn as a father if he had to care for a new baby and me at the same time?  What if this is really about my ability to raise my children?

What's it all about, anyway?  Why do we want to have kids?  Because we want to be parents.  Once in a moment of guilt I told Shawn I feared how he might feel if I was the reason he couldn't have kids and he pointed out that he didn't marry me just to HAVE kids, he married me because he wanted to be parents with me; it was so we could RAISE kids.  For us, it's all about the family we'll have and not so much about how we have it.  

For as old as I generally feel and while it's true my body is not a typical 28 year old body, when it comes to the fertility world I am still young.  We could get five years down the line, decide we still want to try for a biological child, and have time to work with.  Adopting in no way closes any doors at all for how we'll continue to build our family.  But continuing with treatments right now no longer seems right.  We're not closing any doors - we feel that if I were to get pregnant naturally at this point it would indicate to us that my body would equipped to handle it and we'd welcome that - but we aren't going to try to force it for a while.  But it is still the right time for us to begin raising kids, so we're turning to the adoption world, and couldn't be more excited.

This is an incredibly personal decision, and I absolutely expect that you will each have your own opinions and answer for what it's all about to you.  I completely respect your decisions and know I can count on you to respect ours.

Empathy: The Human Connection to Patient Care

To all my activist, patient, caregiver, and professional friends, this is something worth a little more than four minutes of your time. 

I'll leave it to you to take from this what you will, but I can say that to me, a patient, it said "SOMEONE out there has their priorities in order, and is trying to teach that to everyone else", and that's extremely comforting.

If you're up to it, leave a comment on this post with your reactions!  I'd love to see what a little crowdsourcing could accomplish with this striking kickoff.

Solar Flares and Sjogren's

In a recent post of mine, I told you I was participating in our good buddy Julia's competition to design an image that symbolized Sjogren's Syndrome (or my experience with it).  Since Julia has now posted her finalists, I can reveal my full contribution (and I use the term loosely) to her effort.

As a visual thinker, I hoped the inspiration for this piece would come to me easily, but alas it wasn't that easy.  The only symptom that every Sjoggie I know has in common in fatigue, and nearly all experience brain fog, but I have no idea how to visualize these experiences.  I'm also not aware of any test, treatment, or device/tool that would resonate with all Sjoggies.  So instead, I thought about what having Sjogren's means to me.  To me, knowing I have Sjogren's frequently calls to mind the biggest, baddest trigger I have - the sun.  Sun exposure is what kicked my disease into an active state when I started high school, and even mild exposure or God forbid, a burn, can send me into a flare now.  The extreme, months-long flares I had in high school were much worse and it took a long time to learn how to manage my sun exposure more effectively.

That's when it struck me - the sun...causing flares...a solar flare!  That's a sufficiently sardonic and yet punny symbol if ever there was one.  It symbolizes both a burst of energy which people would usually consider a positive thing but which for a Sjoggie can precede a disease flare, and a destructive and essentially unpredictable force outside of our control.

Dear Lord, it looks worse every time I see it - I swear, it's less embarrassing in person.  Ok not by much, but still!
(PS- I gave Julia permission to use the image as she sees fit but since it was contributed for her use, I ask that you not use it but rather link to her or my site...you know, if you want to share an entertaining example pathetic adult artistry in crayon.)

Unfortunately, I must have been out sick the day they taught reasonable artistic skills in school (hey, I was out a lot, it's possible).  It is PURELY out of my sense of obligation as a health activist to you and my fellow sickies that I forced myself to create my embarrassing image and submit it to Julia.  Naturally, in True Julia Form, she couldn't let my humiliation go quietly into her files - no, she included it in her post today about the entries for her contest, Creative Challenge Finalists Revealed.

Fortunately, though, her post also contains submissions from truly gifted and exceedingly clever individuals.  I am quite content to leave this type of imagery in their far more capable hands.  Head on over and check out their handiwork - it's really quite touching!  I think you'll like it....

Kindling

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.

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.

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!

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."

UII Blog Carnival #1 - Successes!

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

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

Image of Awesome Kid found here.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Lines Are Still Open

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

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

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

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

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


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


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

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

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

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

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

Great or Small

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

"Every little bit counts."

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

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

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

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

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

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

How easy is this:

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

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

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

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

Ewwy Gooey

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

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


*bows*

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

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

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

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

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

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

Photo found here.

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

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

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

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

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