St. Mary Magdalen Church 2013 Christmas Concert

This song, "I Was Touched and I Believe", was my favorite of all the songs we performed at my church's Christmas concert this year.

Yes, I have joined a choir.  The last time I sang with a group was as a college sophomore, 8 years ago.  The reason I stopped for so long?  Damage caused by Sjogren's-induced dryness.

Which, at least to me, makes this that much more of a surprise, and a miracle:)

Anyway, I loved this song because it had a beautiful harmony (I sing alto), and the lyrics were just so amazing...
I believe the little child born of Mary, meek and mild, came to touch my aching soul, and by his touch has made me whole.
What's not to love!

MERRY CHRISTMAS AND HAPPY HOLIDAYS!  Best wishes for whatever winter celebration brings you together with your own family, friends, and passions!



(Video is an excerpt from the concert recording by Jon Dorfman, permission is granted to share with proper credit and citation.  Read more about Jon's work at his blog http://aspieepilogue.wordpress.com/)

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 ;)

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!

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.

I'm Ba-ack!

I'm home!!!!!!!!!!!!!

This post is coming to you live from my new computer, complete with this-decade operating system and web browser, which allows me to use Blogger!

I'm overwhelmed and don't know where to begin, and the husband is leaving in a couple of hours for an out-of-town convention and I want to spend more time with him, but I had to stop in.

I'm alive,
I'm doing ok,
I haven't fallen apart or had an major medical mishaps.

I have, however, heard that some of you have been trying to check in on me, and I'm so moved.  I also know an amazing number of you have stayed extremely loyal and continue to visit my blog or send others my way.  What I don't know is how to tell you how grateful I am.

Which is why even though I don't have time right now to do you justice with a quality post, the first thing I had to do with my new operating system was stop in and share a huge virtual group hug, because I may have been MIA from your browsers but you haven't been missing from my heart all this time.

I'll be back to try to make it up to you as best I can.  MWAH!