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.

Enervated

I learned a new word this morning: Enervated.

Image found on a very cool Visual Dictionary site from Manhattan Prep GRE Blog.  I relate to this hippo.

I was a voracious reader as a kid.  Remember those summer book lists they put out for each grade level, and you were supposed to pick one or two books - depending on your level and just how far the school board had that stick up their collective butt that year - which you would read over the summer and report on at the beginning of the next year?  And inevitably, it would be two days before Labor Day and your mother would be hanging over you threatening not to let you enjoy those last few days of freedom if you didn't read that book already even though you both knew she was bluffing because unlike the school board your mother's butt was stick-free?  I loved those lists.  There were summers where I read the obligatory books from my list, but they had posted the lists publically so I went through the ones for other grades which were always 10 times cooler than my list and read a bunch of those.  One year, I think I knocked out the entire list for two grades.  And yes, I did other things, but no, I wasn't much of an outdoor person and I think in retrospect we can be glad I didn't spend more time in the sun at that age!

Anyway, as a result of reading so much I've always had a pretty respectable vocabulary.  Of all the "nerd" things I did, I never really minded being mocked for using "SAT words" because I liked being able to say precisely what I meant.  But when you're a smarterish kid and go to a smarterish kid college (Villanova) and work with smarterish people in a professional setting, it takes more than compulsory school reading lists to maintain this reputation.  It also doesn't really help that my best friend from school is an English major and my best friend now is a Journalism major with an unimaginable flair for all things peculiar and unusual.  And I'd NEVER want to let you, my dear readers, get bored with my basic and unenlightened language when I write!  I still love to read, but don't have the time to take down the volume of literature I did in the good ol' days, so now when I need a word to make my point or to do so in an engaging way, I leverage the wonder of the internet and hit Thesaurus.com!

So how did we end up with "enervated" today?  Well, all week the husband and I have been trying to take down some household projects which involved a significant amount of time running errands and traipsing through stores to find just the right thing at just the right price as well as drilling, assembling, moving, and arranging several rooms worth of goodies.  I've hung curtains in two rooms and a ladder on the side of the garage, made a truly manic pass or two around the yard with an imposing set of hedging shears, and assembled furniture.  In the process, I learned a few things:

• Sauder brand furniture is gorgeous and of a delightful quality, but heavy (each of our two dressers weighs as much as I do or more) and when they say "assembly required", they ain't kidding!  
• Left in the wrong hands (mine), even a moderate pair of shears can be leveraged to take down several bushes not to mention weeds, overgrown flower beds, and some God-awful plant by the AC compressor.  Also, with shears in hand I feel like a lady Paul Bunyan, felling microforests of weeds with one pass of my blades...but I digress before this gets creepier.
• My favorite weather is that which keeps me in a very mild sweat, and this makes me feel invigorated and up to taking on physical challenges, but also obviously makes it crucial to hydrate myself carefully.  Because of my combination of Sjogren's Syndrome and Dysautonomia, managing hydration levels involves a balance of taking in the right quality and quantity of liquids as well as the right volume of salt at the right times (I use a high sodium diet to avoid Beta-blockers).

And so, after yesterday (the apex of my physical activity for the week as performed on the hottest day) and without having consumed a drop of alcohol, I awoke this morning feeling remarkably hungover.  It took me a few minutes to piece together that it was really straight dehydration.  Guess I didn't quite hit the magic combination and timing of fluids and + salt yesterday after all.  I also went to bed last night with significant arm and shoulder pain from overuse, so at least it wasn't a surprise when that was my worst symptom again today.  

I wanted to come on here, share with you this tale of exertion and dehydration, and describe how my arms feel...but I needed just the right word to describe it:)  Unable to come up with this adjective myself, Thesaurus.com provided this gem:

Enervated: adjective; without vigor, force, or strength; languid.  

Example of use- "He had come in dehydrated, with sunken eyes, too enervated to even cry." 

(How ironic!)

Child, after my own heart, cited as Funny-potato.com but sourced from this vocab study guide.

I think that says it all.  Most of my body, and particularly my arms, are enervated.  I'd love to soak in a tub but it needs to be cleaned first and I don't have the strength to do it right now.  On top of it, my mother-in-law may come by to help teach me to garden (perhaps with a little less destructive yet cathartic abandon) and my Journalist friend offered to hop over and go on a trail walk with me.  I know that when my body feels like this I should really give it a FULL day truly recuperating, but I can feel my energized spirit fighting my enervated body on this one!  Perhaps I can try to limit myself of bouts of activity interspersed with couch-floppage?  I'm sure my friend will be just as happy to veg with me, the puppy, and a glass of iced green+white tea with mint, right?  Cause that sounds mighty good to me...

All-too-realistic comic strip by Chris Spain, found on his blog from 8/20/2012.

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....

New Therapy Checklist - 10 Answers You Need

On any given day, we patients progress through a common linear set of events, such as the following:

• We go to the doctor with a problem - a new symptom, increased frequency or severity of an existing symptom, or even to manage an asymptomatic issue of which we were already aware.
• Especially in the case of a chronic illness, we celebrate a possible treatment which may alleviate this problem.
• Eager to improve our lives, we start down the treatment path prescribed (be it pharmaceutical, physical, or another type of therapy)...and quickly encounter a side effect.  Or perhaps we don't seem to experience relief, or maybe we do but this relief is incomplete or short-lived.

We're now faced with questions: Do I stop my treatment?  Is this normal and safe?  Is it normal but not safe?  Are there things I can do to make it more tolerable?  Does this mean it isn't working for me?

We have these questions because we didn't know what we were getting into.  Either we misunderstood what our doctors told us, or perhaps they never even told us many of these details to begin with.  The doctor's role isn't restricted to managing our illnesses, it also includes managing our expectations, and that clearly doesn't always happen.

Today while covering day one of the Patient Summit USA conference as part of the WEGO Health Press Corp, I listened to several presenters discuss critical aspects of the patient-provider relationship that impact how likely patients are to adhere to a course of treatment (especially medications).  In fact, "adherence" was the buzzword of the event.  From these conversations and drawing on my own observations as well feedback I've received from other patients, I was able to identify several key questions I believe a patient should ask about any treatment prescribed for them.  As was pointed out to me by Dr. Steven Feldman who gave the opening speech this morning (yes, a DOCTOR said this, not a patient advocate), the fault doesn't lie solely with the patient - the provider has an obligation to communicate with the patient and to do so effectively.  After all, if you say something but no one hears it, did you say anything at all?

So, in light of this argument that doctors should take a more proactive role in getting information out to patients even if they don't ask, I believe that, as always, it is ultimately on us to ensure we get the level of care we require.  This care and information need to be at a level we can understand if they are to be used to their utmost whether we get that by reading information sheets or asked questions of the provider during the visit.  And therefore I present to you not 10 Questions to Ask, but 10 Answers to Have about any course of treatment before leaving the office.

I feel like purchasing this post, found here, for a few physicians - and patients - that I know!

1. What diagnosis does this treat?
2. What symptom(s) does this treat?
3. How does it work - what is the mechanism or process (i.e., stopping this from happening, increasing that, and so on)?
4. How much improvement can I expect (full relief, partial recovery, etc.)?
5. How long does it take to begin seeing a change in my symptom or condition?
6. How long before the full extent of relieve I can expect should be realized?
7. What are normal side effects which don't indicate a safety risk, and how can I cope with them?
8. What are abnormal or particularly worrisome side effects which signal I should stop the treatment?
9. Are there any other risks I need to consider, such as long term effects or interactions with other medications or supplements?
10. Why do you think this is the best treatment for me at this time? OR I have some concerns I'd like to discuss first.  (Depending on how you feel about the treatment.)

I can't stress enough the importance that you don't just ask these questions, but that you really get answers.  Answers which MAKE SENSE TO YOU, at least to a reasonable extent.  YOU have to follow this course of treatment; YOU have to make decisions while on the treatment about hurdles that may arise; YOU have to live in the body that was affected by these decisions.  Here's an example of what I would consider reasonable answers for taking Plaquenil, a common maintenance drug prescribed for Sjogren's and related conditions.

1. Plaquenil is being prescribed to treat Sjogren's Syndrome.
2. This medication should help minimize overall inflammation and general disease activity such as brain fog and fatigue.
3. Plaquenil helps reduce these symptoms by suppressing the autoimmune system so it won't attack healthy tissue as much.
4. This course of treatment is meant to reduce existing symptoms that are due to highly active inflammation processes in the body as well as slow the progression of the disease going forward.  While possible, it is not likely that the patient will have complete relief from these symptoms.  The patient should expect to notice an overall more comfortable level of functioning with less fatigue and brain fog and fewer and/or less severe flares.
5. Patients usually begin to notice improved symptoms in 3-4 months though not complete relief.
6. It may take as long as 9 months to realize the full extent of the improvement so we usually ask patients to stay on the treatment at least this length of time if possible.
7. Some patients have mild nausea when taking the pills, so patients may want to take them with a glass of milk.  Also, it is not uncommon to have unusual dreams while taking this medication but this side effect is not harmful to the patient.
8. Patients may experience more concerning side effects.  If a patient become physically ill for 3 or more days after beginning the treatment, discontinue use and contact the prescribing physician.  If the patient has symptoms of a severe allergic reaction such as swelling of the throat, discontinue use and seek emergency medical assistance.
9. Two primary long-term risks are associated with Plaquenil.  In some cases, patients taking this medication for a long time develop retinal toxicity which affects vision - therefore, we will have to get certain eye exams every 6 or 12 months to detect any build up before it affects your vision and can be reversed.  The other effect can be liver damage, so we will run common blood tests before every appointment to monitor for signs that it might be affecting your liver function.  We don't see these very often and both are reversible when caught early so we will stay on top of these tests.
10. I believe this is a good treatment for you because you do not have many risk factors, the treatment has a strong history of success in long term disease management, is inexpensive under your insurance, and simple for you to use.  Other treatment options have lower success rates and more side effects, so I'd like to see if this works before trying those.

These really are basic pieces of information every patient should have about their own care.  We are not employees to be directed, we are customers hiring a doctor to provide a service - care and guidance.  Never lose sight of your own right - and obligation - to make the final decisions about your own health!

Boldly Going Where No Crayon Has Gone Before

...and that would be into my hands for an art project!  (Trust me, it's a fate no art instrument deserves.)

As you know, my good Blogger Buddy (and general Sjoggie-extraordinaire) Julia always has a unique idea up her sleeve.  A recent favorite was her plot to procure a small 'fainting goat', but trust me when I say that's just the most recent and relatively mundane idea to come out of her dangerous noggin'.

In fact, one month ago she undertook a particularly risky enterprise.  She opened a contest for designing an image around which Sjoggies can rally.  A mascot, a logo, or a symbol, if you will, and encouraged all her readers to participate.  Now, my family can testify that for all the traits I inherited, I was spared any and all artistic skills.  But Julia, being as persuasive as we know she can be, made me an offer I just couldn't resist - the opportunity to attempt to put an image to the invisible world in which we live.  Come on, now, how can I pass that up?

Clearly, I can't.

Photo courtesy of my dear husband.  Who was beyond amused by my undertaking.

Yes, ladies and gents, I dug out (ok, had my husband dig out) my big 'ol box of crayons and give this a go.

What?  You want to know what I'm drawing?  HA, can't tell you that!  It's a killer idea - can't let anyone snag that;)  But fear not, I'll reveal my entry and rationale after Julia's deadline.

In the meantime, why don't you join me?!  Here is Julia's original post about this competition (oh, did I forget to tell you - there are prizes?!).  You'll see the original deadline was this past Monday, but she has since extended the deadline for slow-moving art-eests such as myself, and you now have until THIS Monday, April 29th!  Here's a short summary of her criteria and rules, but check out her posts for all the details:

1. Email your image, drawing, concept of an image, sketch, or model that you think universally represents sjoggies everywhere. Use of a word or alphabet letters will disqualify your entry.
2. You may submit as many entries as you like.
3. You may email your submissions to: juliaschulia(at)gmail(dot)com.
4. All submissions must be received by April 22nd 29th, 2013, midnight. 
5. Judging panel includes: John, Terese, Greg, and D#1. 
6. If judging panel is unable to make decision, I -- yours truly -- will cast the deciding vote. 
7. Finalists will be notified via a post on Reasonably Well and their mailing addresses will be requested. 
8. Winner will be announced by on or about May 1st 13th, 2013.

So there you have it, folks.  You have 5 more days to try to out do my design magic...if you dare...(mwahaha).  GO!

You Can't Finance Energy

Illustration by Tim Bower, originally published with this article in Vanity Fair.

Well if that doesn't look like the way I feel on the inside most days....

Tell me if this scenario sounds familiar to you:
It's morning (or lunchtime or afternoon or the middle of the night during an insomnia spree or basically any time of day), and you want nothing more than to lie in bed a while longer.  Not because you're comfortable - in fact, you may be in pain.  But because getting up requires moving your body and that requires energy and you don't have any.

But you do it; you get up.  You have to.  You have a child to get off to school, a friend to meet, a boss waiting for a presentation, and you have to get up.  Furthermore, after you slog your way through a morning routine and are able to leave the house, you have to smile, pay attention, join in conversation, solve problems, and navigate other interactions in this world of ours which all require - you got it - energy.  How are you supposed to do something with nothing?

What's that?  A resounding chorus of "YES, THAT'S MY LIFE"?  Thought so.

Which of course means the next part will sound familiar too.  The way so many of us get through this is by doing what I call "financing energy", but I don't think this is a very good idea.

When we say we're going to "finance" something like a car, house, or even an education, we mean we're going to borrow money for the purpose of making a major purchase and pay it back over time.  We agree to give up a smaller amount of our money each month for a period of time so we can have something bigger & better right now.  Usually, at least if we do it right, we first consider how much we can handle giving up each month to make sure we don't "over extend" ourselves and if we were right, this works just fine.

The problem is that energy doesn't work that way.  You could say that we give up some money to get energy when we buy and consume coffee, energy drinks, even high-sugar items, or any  other device or trick we can buy that results in what appears to be energy.  But in the end, the only way to pay back energy is with energy.  You can't trade money for it.  If you use this energy now, you won't have it later - and furthermore, you can't spread out that "cost", you have to pay it all back right away which means you won't have any energy left for other things for a while.

Oh and the way we pay interest on purchases we finance?  Where we pay a little extra in total for the luxury of spreading out the expense?  Our bodies didn't forget that either.  If you expend more energy that you really should have used, you won't just be out of energy tomorrow, you'll feel worse than you started today.

Financing energy is a dangerous, if common, practice.  It almost always ends in the bodily equivalent of foreclosure...or one might say, forceclosure.  (I know, I'm slipping into Jen Pun Land, but this one's actually pretty logical.)  An attempt to obtain more energy now than you should have will probably result in a total loss of all energy for a period of time and cause you some level of suffering.  So, we have to find alternatives.

Obviously, the best solution would be to space out tasks to respect your energy limits (much like credit card limits in this case), but this is obviously difficult at best.  If this can't be done, we can try some less ideal options that might still save us the pain and regret later.  A difficult but effective solution is to learn to say "no".  No, I can't run that errand today.  No, I won't be attending that event this time.  No, you will need to wait for us to go over that.  It's a fine line, because sometimes saying no leaves us feeling controlled by our diagnosis but it's really the other way around, we're in control because saying no now means we'll be able to say yes to things later!  We have to remind ourselves, and each other, and those around us, that it's ok to sometimes say "I will be happy to do that tomorrow" or "please let me know next time that comes up".  We fear missed opportunities, perhaps even more than the average person.  But when we take out the energy loan we can't pay back, all we really do is guarantee ourselves a whole lot more missed experiences.

Instead, let's build a new "bank" for ourselves, where we make deposits - running an extra errand on days we have some extra time, doing favors for others when we can so we don't feel bad for asking them to return them later, or even strengthening our foundations by doing things to make ourselves healthier through diet, exercise, and proper rest.  Let's create a culture where "saving" is good; where reserves are built up before they are drawn down, and where balance is valued.  We are not the USA; we do not have a national debt and cannot print money.  Just like our society is realizing across the country (and globally), it's time to make a habit of living within our means.

Ironically, as I was about to hit publish on this entry I saw the following post on Facebook.  Seems I'm not the only one with this train of thought today!

Just Another Day

Drama masks found here.

As any good Sickie knows, there are times we just aren't doing well.  Times when we're run down, experiencing increased symptoms, and may be having heightened disease activity.  These times are unpleasant and, especially as an activist, I spend a lot of time and effort trying to convey just how severe these bouts can be.

Among ourselves, we often discuss the way our society encourages us to suppress this reality.  We're supposed to put on a smile like the face on the left even when our bodies and souls feel like the face on the right.  If asked "how are you?", any answer other than "fine" is considered impolite.  Naturally, this adds to the feelings of isolation we tend to have and can an even contribute to the phenomenon where those with invisible illnesses begin to question their own sanity - and sickness.  It is necessary for us to have ways to explain what we go through that resonate with "the outside world".  This is why diagnoses are so important - a name, given by a doctor, means it's real, right?  Medications and treatments are only given for "real" problems, of course, and having unified terms for hard-to-describe symptoms, such as flares, help us unite ourselves as well as demonstrate the validity of our experiences to others.  And this is important.

On the other hand, at the same time that we are trying to validate ourselves, we also have a singular reality to deal with - we are sick.  Every day.  Not always to the same degree, and affected by a myriad of factors, but still "sick".  And if we were to get worked up every time we hurt, are weary, or experience some other common symptom, we would eventually cease to function altogether.  And so we develop our own sense of scale; our own perceptions of what's worthy of some emphasis and what's par for our own course.  We simply do not want to live in a constant state of drama - it's bad for us and it can suggest to outsiders that we are drama mavens rather than reasonable people going through unreasonable challenges.

But these two facets - validating the severity of our situations and moderating our own daily sense of peril - can come into direct conflict.  After all, it's rather hard not to sound dramatic when the word for a burst of illness is called a flare, don't you think?

Yet another reality, one I discovered while trying to write a laid back-sounding email requesting information so I could reduce my stress and avoid making myself sick.  Oh bother, one battle at a time, I suppose.  I think I'll channel Eeyore while I head off to bed and leave the problem of refining the English language to someone more qualified.  Good night!!

I'm considering having this made into a sign for my bedroom door .  In the meantime, you can see the original site, 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.

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."

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!

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

Forget the dog, I know a few people I'd like to train to clean up after themselves...
Image found here.

I apologize in advance but sometimes you just gotta tell it like it is, and sometimes it's shit, and a little "s" with a bunch of symbols after just won't do!

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

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

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

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

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

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

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

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

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

Happy scooping, fellow Sickies!!

Holiday Travel Tips

In the United States, today was the day before Thanksgiving.  For us, today kicked off in earnest the holiday season...which also meant kicking off the traveling season.  In fact, for the first time since the US recession began, reports indicate we're seeing an increase of as much as 4% nationally in travel for Thanksgiving.  Many of you have already put in hours on the highway, or may even be reading this on your smartphone as you sail down the byways (or sit bumper-to-bumper...).

See the original cartoon at The Week and more from cartoonist Drew Sheneman here.

Yesterday, my favorite blogger and fellow Sjoggie, Julia, posted about suggestions the Sjogren's Syndrome Foundation makes for surviving air travel.  You can see her post at Sjogren's Syndrome Foundation: Tips for Airline Travelers with Sjogren's.  And yes, a lot of these tips are applicable for travelers without Sjogren's so you might want to take a read through.

So, in honor of this national time of travel tips and woes which gives rise to some of the best "Worst Trip Ever" stories, I thought I should discuss the lessons I've learned from one of the most famous travelers & explorers in the world - Indiana Jones.


Photo found here.

And so, for your Thanksgiving enjoyment, I give you my list of...

The 10 Most Valuable Things I’ve Learned from Indiana Jones

1.      If you can’t see what’s ahead, throw sand.

2.      If you don’t know how to get from where you are to where you’re going, just use a rubber raft.

3.      Stay in the shadows but look for the light.

4.      Sometimes air is not your friend.

5.      Fear live people, not dead ones.

6.      Listen to the crazies.

7.      Every crisis is a learning opportunity.

8.      Everyone should know how to use a whip.

9.      Don’t be a child, find something to fight with.

10.  The right hat will work in any occasion.

Happy Gobbles, my fellow turkeys!