Non-Traditional Mothers' Day

Happy Mother's Day, from the bottom of my heart.
To my mom, to the moms in my family, to the moms I'm friends with.
You know how blessed you are to have your kids, and that's one of the reasons in itself that your kids are blessed to have you.

Please post pictures of your handmade, glitter-covered cards, 'check in' from restaurants you're at, and tell the world how much better your life is for having your kids.

Please understand why I won't be hitting "like".
Why I may not even read the posts at all; may scroll right past the pictures.
Understand that it is how I have to take care of myself right now, and not my way of making you feel guilty or casting a shadow on your celebration.
If I didn't think those things were worth celebrating, I wouldn't be working so hard to have them in my own life.

Understand that I am already living much as a mother: getting up at crazy hours to get to daily appointments, stressing over how to balance work obligations with my family priorities, and thinking every day about my someday - children's welfare (not to mention existence). I even endure physical aspects, but instead of labor pains and a strained back mine are injections, anesthesia, surgery, vaginal ultrasounds (which are not exactly as "non - invasive" to me as a woman as medicine wants to label them), body - wide side effects of hormones, and exercise limitations.
And yes, not unlike children themselves, infertility can totally screw up your sex life in ways you may have never imagined. For people like me, it is not in any way "the best part of making a baby".

Understand that in my journey, I am still hopeful.
If I wasn't, I wouldn't be continuing to go through the things I do.

Understand also that for many women, THAT BABY WILL NEVER BE.
IVF doesn't always work, even adoption isn't always possible or may be an option some people do not want to take.
Understand that childfree is a choice for many, a default for some, and that I am quite reasonable in my fears of it happening to me.

Understand that telling us "it'll happen someday" is not helpful; "I love you" is; "I'm sorry" is; "I pray for your happiness" is.

And if you are so inclined, share my post as I have shared the posts from my friends who are also non - traditional moms on Facebook today.  Use the social media network of your choice.

My post is complete with pictures for my lost baby- the ultrasound of my daughter Grace when she lived so briefly within my womb, and where she now lives represented by a mustard seed tattoo and eternally in my heart.

Mother, May I?

As I scan the baker's dozen posts I have in draft, spanning probably a year or more of writing attempts, I think it's time to accept that the days of my more prolific blogging (if I can put it that way) are likely behind me.  Even though it's been far longer since my last posts, I only recently acknowledged that this clearly wasn't the temporary burnout lull I wanted it to be.

Hang on, don't get ahead of me here - I'm not saying I'm done altogether.  Trust me, I'd wax at least a bit more poetic and certain conjure up more valuable sentiments if this were my last post.  This isn't The End, but I think it's time to accept it is a transition point.  Or more precisely, that we passed through this transition some time ago but stubbornly refused to flip over the map and keep going.  It's time now.

Baller pic found here.

In my advanced age (these late-20's years are a doozie, people) I've made the move from permission-seeker to permission-granter; my mother isn't responsible for me anymore, I am.  I grant myself permission to focus my energies on aspects of my life that need more of me right now.  I've always liked my jobs, but I'm finally working in my industry (not-for-profit healthcare) and in a position to put all the skills and ideas I've developed into play.  A new diagnosis of PCOS is also consuming many of my resources - I have so much to learn as well as figure out by trial-and-error, and many plans to reshape.  And who knew that having a whole house (not to mention an insanely fertile (read, overgrown) yard trying to reclaim any cleared area) would take so much time compared to that required by a two room apartment!

I learned something else.  I learned that stepping away from something doesn't mean it isn't important to me.  In fact, I suspect I may make a foray into the world of infertility awareness in the not too distant future.  But for now, I'm going to continue loving the health activism world from a slightly more passive stance.  I need this right now, and I need to be ok with it.  So I'm kicking the guilt out of my life; no more sheepish glances at the Blogger button my toolbar, and I won't be embarrassed to mention my old blog posts as if I had failed.  I had a lot of success so far and between you and me, I think I will again, but I need to live a little more in the middle here.  Thank you for understanding, as I know you do.


Not to leave you on such a "blah" note, here is an excerpt from a conversation I had the other day with a friend.  Sometimes when I go on tirades they are just too funny to keep to ourselves, and public opinion was that I should share this with you.  I want to go on record that I think gender equality means supporting both men and women in their unique gifts and challenges...but there are times when, to use my mother's expression, you just have to call a duck a duck, and this was one of them!

I don't understand engendered fertility.  With absolutely no pain or exertion, the testes produce millions of sperm every day.  They produce so much that men actually, medically, have to expel some of the supply every few days to ensure the quality.  This starts young, they go through a mildly embarrassing phase as they adjust to it, and it continues in many cases until they die or at least until they're too old to care.  Women, on the other hand, go through a potentially very embarrassing phase, which is never really foolproof and can always surprise attack later in life, which can be uncomfortable and annoying at best and more likely involve quite a bit of pain and systemic effects (such as exhaustion, water retention, headaches, etc) just to rid their body of the habitat for the one or POSSIBLY two ovum they produced at a shot.  This issue does eventually disappear but is replaced with a long and equally challenging change process and ultimately followed by imbalances.  And to top it off, sperm released inside the body can survive 2-3 days waiting around for an ovum (just like men to sit around), whereas the ovum, once released, will only take a quick pass through and keep on moving in a 1-2 day span.

Now, I believe in God and all but I can't help but ask "who came UP with this scheme?"

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.

Weeds

Snazzy pot pic found for free, here.

No, not that kind, silly!  Geez, what do you take me for, really?

Although, while I've never tried pot myself, as it is slowly becoming legalized in more states across the country (and is already in use in other countries around the world) for medicinal purposes which may be relevant to our UII community, perhaps it will bear further scrutiny at a another point in time.  I may need to find a subject matter expert on this, though.  Hm....

Anyway, no.  I'm not referring to reefer.  I mean the regular old garden-variety weeds (ha, yes, literally in my garden!) which have overrun my home.  In case I forgot to mention it when I started to blog again this year, we bought our first home at the end of December and until now, I never had much of a garden.  I was aware I don't have a green thumb; in fact I think it's downright brown.  I've frequently joked that when they see me coming, houseplants simply die of their own accord to save themselves from suffering at my inept hands.  (Hey I didn't say I was funny, I only said I try to be.)

Then we bought this house.  With roughly a half-acre of land.  And lots of trees, and shrubs, and bushes, and   over a half-dozen flower beds depending on how you count it.  Which abuts an arboretum next to a state park, further fostering the spread of indigenous flora.  Oh my.  At settlement, the sellers told us a bit about all the planting they'd done and how they picked some varieties specifically for certain reasons, yada yada yada, leading me to the conclusion that I would have some impressive blooms come spring and summer and should probably learn how to tend these gardens.  What I didn't expect was that these beds (not to mention the perimeters of the property) appear to be the most fertile soil I've ever seen, as evidenced by the epic proliferance of weeds that have tried to reclaim the land as their own.

That's right, I'm waging war.
Several times already this season, I've taken the largest sheers we have to the front and sides of the house, where the forests of weeds have all but hidden our front door.  My mother in law, who does garden (whew), came over to help me start pulling weeds and thinning the herds of other plantings.  I recall we spent 3-4 hours at it that day and only got about 85% of the way through one flower bed.  We're discovering that there are only a small handful of actual plantings in each bed but the beds have no mulch or anything and are completely overrun.  Speaking of overrun, say hello to the back 35-40% of my property:

Welcome to wisteria gardens...hey, maybe I can make this a destination and charge admission...!

Because what does a beginner (and bumbling) gardener needs on top of hundreds of well-rooted weeds in her flower beds?  Why, a yard full of very mature wisteria of course!  Let me just add, when these vines intertwined in all the trees and shrubs burst forth with these somewhat grape-scented clusters I took to the Google machine and found out what wisteria actually looks like.  I believe this is Japanese Wisteria which, as you can see, has made an impressive climb into these tall trees across mine and my neighbors' yards.  It is beautiful and I don't want to obliterate it altogether, but holy shnikes people, this is a bit much don't you think?!  Oh, and amid the low-lying vines, there are other shrubs and plants and ... dun dun DUN ... poison ivy.  Which means these two little homeowner newbies aren't going in after the vines on our own.  We're thinking of waiting until the fall when it all starts to die down for the season and hiring professionals to hack it back.  Which of course puts images of machete-wielding treasure hunters in my head...

Another amused gardner commented about the use of machetes, here.

(((Shakes head))) Enough of that!

With all of this in mind, I celebrated our nation's birth on my day off Thursday by venturing out to one of my flower beds to claim my independence from these tyrannical weeds.  To guard against excessive sun exposure, bugs, and contact allergic reactions, I donned long jeans, a long-sleeved t-shirt, and my UII baseball cap, and still only got in about 45 minutes of work before the heat was too much.  I was fairly impressed with myself, though, because I took on the absolutely enormous tall weeds along the side of my garage.  You know how they tell you to lift with your legs and not your back?  Apparently I follow these rules, including while pulling weeds, as evidenced by my strungout hamstrings and bottom muscles for the last day and a half!  I also somehow managed to get six - yes, SIX - bug bites on my shoulder blades (THROUGH my shirt) and two on my FACE in that space of time.  For comparison's sake, I haven't really been bitten at all while sitting around the firepit in the evenings.  Seriously?!

My approach to my weeding has been simple - if it looks like a weed, or I simply don't like it, it comes out.  I realize some of the things I'm pulling may be intentional plantings, but I don't like them and there's far too much going on out there!  And after all, it's MY HOME, so it's my choice:)  (That never gets old, haha.)

But I also made one exception.  As I go around yanking and yoinking, I skip over the clover.  I know they're technically weeds too, but it's this cute kind of clover, growing only in small clusters in the beds, and just as I can arbitrarily rule that some non-weed must go, I can dictate that this weed shall stay!

Cutie pies found here.

Besides, in the otherwise unpleasant task of weeding where I see things I don't like (worms, beetles, spiders, ick blech ack ugh), I get a peaceful satisfaction from scanning the surprise clover patches I uncover for that elusive four-leafer.  Haven't found one so far, but I keep looking.

And afterall, I reminded myself, you can't find a four-leaf clover if you pull all the weeds!

I just love it when I sneak a little wisdom in on myself.  Kind of catch myself by surprise, and am reminded of things bigger and greater and grander than me.  I can play demi-god with my flower beds, but ultimately it's not up to me to determine which things should stay and which should go in life.  There are a lot of weeds in my world and in my past, but if all of the negative things went away what kind of person would I be?  I'd have no drive, little ambition, no sympathy, and no purpose.  I'd likely be alone, having run off Shawn and any other worthwhile companions either through my coldness toward others or my blasé approach to life.  Perhaps I'd be living with my parents or worse, in deplorable conditions, never having been inspired to manage money.  And I certainly wouldn't know any of you without a reason to write this blog.

Maybe I am a four-leaf clover.  Maybe my life is the rare find...what are my leaves?  My gifts, my treasures, my capabilities and blessings that make me unique?

1. My husband and family, who are unique because they give me so much support, and not everyone is this lucky.
2. My business/financial perspective, which helps me maintain some level of stability in my unstable life and lets me dream big knowing the small will be ok.
3. My faith, which I know is something every person has a unique relationship with but I have to acknowledge that for my many sickie peers who feel forgotten, I know I am not.
4. My diagnosis, which underlies everything else.  I need my family's support more than I should because of these medical challenges.  I crave stability for many reasons, including as a counterbalance to the uncertainty about my medical situation even from day to day and over time.  My continued faith is, to some, surprising given the unpleasantries of being diagnosed with a chronic illness in my teens and the chronic challenges that come with that.  

To come full circle, this is my weed.  Without it my life may be cute like the three-leafers we see above, but nothing special; with it, I feel like a rare find:)  And don't think I don't "get it" - I don't think we should necessarily pretend we enjoy the weeds, but we do need to take that step back and look at the whole picture sometimes.  I think it's those moments when we think "just when something was going well, this weed popped up and spoiled it" when we're seeing our fourth leaf and just don't know it.  Keep an eye out for those times that show you how rare a find you are too.

You Don't Say

As some of you may know, I recently started at a new job.  Yes, that's right, I've moved out of the world of the frazzled auditor and into that of the in-house accountant.  My new coworkers are very nice, and I get to be part of some process analysis and revisions which are very exciting to my inner dweeb.  But the best aspect so far?  I leave every day before 5:30!!!  That's right, I'm bragging:)  (Ok yes there will be critical times when I have to stay 'late' but that's part of the biz, and late here will mean 6-7ish.  Holy mackerel.)

I've come into the team as a Senior Accountant, commensurate with my experience and the need to complete my CPA (yeah...that didn't die).  The same day I started, another new hire from a different Big 4 firm came in as an Accounting Manager (he had been a manager at his former firm).  I think we need a nickname for him...hm...let's call him New Dude, Too (NDT for short).  NDT and I have found that it was beneficial to start together because we can relate to each other's backgrounds and help each other transition to our new worlds.  None of our direct peers and few of our extended coworkers come from a similar background, making our connection that much more valuable.

There are aspects of the transition to a new role that I anticipated, such as learning to express myself in ways my new team understands and establishing my reputation anew.  Naturally, there are also things I couldn't prepare myself for, like the different approach a small company has to onboarding and training.  Figuring out how to more autonomously structure my days based on the combination of ongoing tasks and special projects on my plate is a surprising though welcome learning curve.  I realize these types of challenges are familiar to most people, but this is my first job change as an "experienced" hire so I find myself marveling at the experience itself!

NDT and I find ourselves on the same page about most things so far.  We like the same people, we note the same peculiarities with others, and ask ourselves the same questions as we learn how the company functions.  Since we are at different levels, we have been asked to take on different tasks, but we've leveraged that too. He's been working on projects related to mapping accounts which he explains to me, and I've been learning the nitty gritty things like how to work parts of the accounting system which I show to him.

I'm aware that as we're each establishing our images with the rest of the company, we are also developing our understandings of each other.  Maybe I'm not supposed to say this, but men at the Big 4 just tend to be more traditionally polite; some might say chivalrous.  They offer to carry things, volunteer for errands, and there are some you will never see walk through a door before a woman.  My observation is a combination of my personal experiences as well as discussions I've had with countless coworkers of both genders.  Perhaps it stems from the emphasis these companies place on classic manners such as which silverware to use for which course and email etiquette   As a pair of X chromosomes, I have to say that this is pretty nice.  It simply makes someone feel good to have someone else take a little extra effort to make their day a bit easier.  And as a clutz with occasional physical challenges, this kind of treatment can really come in handy.  However it's always been my opinion that men don't necessarily OWE this to women, and certainly that women can and SHOULD return the favors from time to time.  I'm just as capable of holding the door for a man or taking a package from an overloaded coworker.  Sometimes it just seems right to take care of my own task or get something for myself, even if it's just for the sake of taking turns.

I suppose this is why NDT made an interesting observation the other day.  It was a particularly nice, warm day and our company has a few tables outside for employees to use as well as a small walking track, and NDT and I like to use our newfound energy and time to make use of these amenities.  On this particular day, we had grabbed our lunches and headed out to one of the tables.  On the way, I offered to hold a door and press the elevator button, but NDT wouldn't let me.  During the ride downstairs he observed "you're a very ... [pause] independent [pause] person.  Like the other day when you wouldn't let me get the chair".

Me?  Independent?  Perhaps to the point of stubbornness?  Tosh.
...Well.  I don't know I'd use the word 'independent'.  Maybe 'empowered' or 'capable'.
...Ok, independent.  But that's a good thing!
...Ok yeah I see your point.

Fr. Anthony Messah describes what's it like to be an "independent-aholic" with this graphic, here.

So I tend to be a bit strong-willed, empowered, enabled, self-propelled...so what?

We could go with an old-fashioned childhood experience psychology here if we wanted.  I have strong, distinct memories from elementary school of teachers asking for a boy in the class to carry a heavy box.  The funny thing was, I was larger and actually stronger than most boys in my class at that age.  I was simply more capable of carrying the box than they were, but the teacher only asked for boys.  I usually challenged the teacher (yes, at the tender age of, oh, 6 or 7 until 11); some would acquiesce and ask for any student capable of carrying the box, but others would still insist to my face that they wanted a boy to do it because it was really heavy or a girl might get hurt.  It wasn't until well into my 20's that my strength began to fade.  I may have always been a clutz and accident prone, but I was also particularly strong in my younger life.  And those memories stayed with me.

But we could also acknowledge the effect of a chronic diagnosis on my will.  My strength as a child was sometimes dismissed, but on top of that it was threatened by chronic diagnoses as a teenager.  It's well established (in my mind) that this was the point when I developed the mindset that I don't know how long I can do any given thing, so I'm going to do anything I can as soon as I can, because I don't know how long that opportunity will last.  Maybe this same mindset led to this "independence".

Or you could ask my parents, who would say I was born that way.  There's a legendary story in my family about the L&D nurse who observed during my first bath that I had a "worried, worried look" and my innate perspective for simultaneously respecting and questioning authority.  I never took any explanation at face value, though I wouldn't exactly violate it until I was sure it was flawed.  It is said I was born middle-aged, with an independent questioning mind and a will that considered other people but didn't automatically agree with them.

And so between a natural inclination, a childhood perception, and an adolescent encounter, I stand before you today, "independent".  This is one of the first traits a new coworker noticed and went so far as to comment on to me directly.  Well, you don't say ;)

This Monkey Needs No Uncle

This is Able, the NASA monkey who, with pal Baker, became the first mammals to be successfully launched into and returned from outer space.  Photo (and related article) found here.

Able is a rhesus monkey, and was chosen from a group of 8 select monkeys who had undergone many months of training and testing through NASA's early space program.  The monkeys were being considered for a special project - to be the first to successfully launch a living animal into space and return it to Earth in tact.  Monkeys were the chosen species for their biological similarities to humans, and of these, Able was chosen to make the journey.  Why?  Because it was believed she could remain calm during flight.

The monkeys (Able and her travel mate, Baker) weren't just strapped into the capsule, they were fitted into full-body restraints which prevented nearly all movement.  In these housings, they were sent up in a windowless capsule.  According to Mysteries at the Museum, they were launched atop a 60 foot rocket to a maximum height of 300 miles above the Earth.  On the way up, Able's body - covered with sensors providing biological feedback to NASA's crew on land - showed signs of distress as she attempted to withstand excessive g-forces.  Once they reached their peak, both astroprimates returned to normal and healthy vital stats.

However, this reprieve was temporary, for after only a few minutes in orbit, the nosecone of the capsule which carried these hapless travelers separated from the rest of the vessel and plummeted toward Earth.  We are told the monkeys experienced forces equal to 30 - 40 Gs on their descent, which ended only when their nosecone literally crashed into the ocean.  A US ship immediately moved in to retrieve the capsule and its passengers, and the crew members were the ones who would have to open the capsule and discover their fates.

Able and Baker were alive and well, still secure in their restrictive carriers.

Yes, dear readers, the first mammals, the first primates, to survive a trip to outer space AND the return to Earth were women.

These women were chosen for their intelligence, strength, and most of all, ability to remain calm and level-headed under extreme conditions.  They survived physical environments that quite literally would crush most of us, not to mention the psychological terror of being immobilized in an enclosed space - one I highly doubt was lit or at least not well - that was propelled by unfathomable force, momentarily floated, then plummeted until it crashed and bounced about in the waves.  Women who emerged just as stable as they were when they left the planet.

Perhaps there's a deeper biological story behind the fortitude we see in modern women than we consider.  We are creatures designed with the physical ability to grow a human being within our own bodies, to eventually convey this being to the outside world, and even to then provide all nourishment and care necessary to sustain this life, all on our own power.  Furthermore, we see other women go through these experiences and still accept the tasks for ourselves...in fact, many of us feel a deep need to do it even if we are terrified.  That is, we withstand severe psychological challenges to do what we know must be done.

Of course, I'm sure there were male monkeys in the group of animals trained for space flight, and that they may have been nearly as qualified as Able and Baker for this trip.  It's perfectly reasonable that the ladies exhibited traits that were inherent to them as individuals rather than them as females, just as some women are more adept at certain skills than others in our society.  Surely, Able and Baker were selected for their unique personalities and abilities and not for their gender.  But am I surprised that the first living Earth creatures to survive these trials were women?

Not in the least.

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.

My Spoonie Mentor

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

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

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

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

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

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

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

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

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

Learning from those who walk before me, like the beauties in this image, found here.

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.

An Open Letter to Medical Professionals & Caregivers

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

Image found here.

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

But even the best in your profession can lose their connection to their patients as people, with pride, self-respect, and dignity.  Whether you're new to your role with a freshly printed certificate in hand, haven't had personal experience coping with illness (or seen a loved one do so up-close), or are an experienced leader in the field who's been doing this so long you've begun seeing patients as experiences and not people, it happens.  So you may need to be reminded from time to time.

Image found here.

It's human nature (including both you and me) to complain.  Even when we love what we do, we can't help but gripe about a few things - gossipy coworkers, the dreaded paperwork, mandates from superiors which seem oblivious to the work already on our plates.  And when our jobs require us to interact with people on the "outside", we're going to get frustrated.  As an auditor, I've had my share of client experiences that feed grousing, and I know patients can be just as challenging to you.

Frustration depicted here.

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

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

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

Not all patients are elderly, as seen here.

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

Smiling patient who must be getting compassionate help from his spouse found here.

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

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

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

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

Sincerely,
21st Century ePatients Everywhere

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

I Didn't Like the Alternative

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


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

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

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

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


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

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

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

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

This is Noah, who had a heart transplant at 10yrs old.  I don't know how I'd survive needing a heart, getting it, or being the parent of a child need one...or donating it.  But I would, because the alternative isn't an option.  Image found here.

Maybe I am strong, as so many people like to tell me.  But if I am strong, it's not because of what I did, it's because of what I didn't do.  I didn't pretend there was another more attractive alternative which didn't really exist.  I know people who do this, and all it accomplishes is shuffling the responsibility while still leaving them worse off than they began.

Cartoon found here.

So if you're like me and so many of my friends, the next time someone asks you
"How did you do 'it'?"
you can tell them
"I didn't like the alternative."

Take a Hint, Already!

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

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

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

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

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

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

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

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

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

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

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

So there!  Go!  TAKE THE HINT, and share the love!!!

UII Blog Carnival #1 - Successes!

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

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

Image of Awesome Kid found here.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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