December 30, 2010

Jenny's 2011 UII & Me Resolutions

Image found here.

Usually the first to sniff at something as widely fussed-over as New Year's Resolutions, I have to admit I may be a bit unfair.  This year, I read a blog by Janeen on WEGO Health (see link in #2 below) who detailed her resolutions.  Her writing made me realize I'm not a fan of the usual "lose weight, get organized, blah blah blah" goals, but that if I actually gave them some thought and oriented them toward the challenges I've faced this past year, well, maybe it's not so silly.  So, at Janeen's invitation, I prepared the following list:

Jenny's 2011 UII & Me Resolutions

1. Strike a balance between learning from other activists and comparing to them.

It’s one thing – desirable, even – to stand on the shoulders of giants.  Other health activists have inspired me regarding specific topics/projects and in more general ways.  They have great ideas and many times have already been down the road I’m approaching, so it’s a perfect opportunity to learn from them.  Our networks providing the ability to share knowledge and ideas are some of our greatest assets.  However, while doing all this sharing, it becomes easy to start comparing.  For instance, many of the activists I interact with blog far more frequently, engage in Twitter chats regularly, or do (and relay) some really in-depth research that outshines my activity.  But these same women (most of my contacts are women) are also quick to remind me that I need to live by the guidelines I preach - to find what works for me and my situation.  Furthermore, the people for whom we "act" as activists have incredibly diverse needs...and so by the same token, each thing I can do has the potential to help someone out there.  Valuing my work by comparison to the work of others is entirely pointless...though certainly a hard habit to break!  This year, I will use others as a source of inspiration but if I catch myself comparing, I will stop and evaluate if something about my life makes this benchmark unrealistic.

2. Blog more.

Janeen, an activist on WEGO, wrote this post about her resolutions (which is why I'm writing mine), and her first resolution is also to blog more.  Janeen describes how in the past few years she's gone from posting over 400 times in 2007 to 'only' 105 in 2010.  This post happens to my 50th.  That's 50 total, since September 2009.  So I already have to go reread resolution #1 above, and remind myself that in this business, quantity isn't the most important thing.  Janeen has some target numbers in her head, based off her experiences, availability, and particular audience which I'm sure are entirely appropriate - for her.  It would foolish for me to aim to blog 100 times in the coming year, because I know I won't have the time for one, and that if I forced posts and blogged for the sake of blogging, I would compromise the quality of my blog.  All that being said...I do want to increase my posting.  I usually have an idea or two for a good post floating around that never makes it to the web, and I see the value of being a consistent poster (even if not as frequent as others).  I think my goal this year will be something like to blog 2-3 times per month.  I may reserve the right to implement this target number after busy season.

3. Feel good when I achieve goals.

I’ve identified a rather unattractive habit of mine.  Being not only a woman in big business but also from a big business school, I’ve studied the goal-setting process multiple times; there are days I feel like goal-setting is my life.  I’m also quite aware of the importance of setting reasonable, attainable goals – there’s little to be gained when your goals aren’t realistic, not to mention the damage feeling like a chronic underachiever can do.  This must be something I have a grasp on, because I frequently set small goals for myself which I do achieve…but when I achieve them I rarely feel good.  Instead, I tend to feel as though I must have shot too low; that if I had set a bigger better goal I would have achieved more.  Honestly even I can objectively say that’s not right, but that’s the disconnect between my logic and my ambition.  This year I will work on patting myself on the back for achieving my goals of all sizes, WITHOUT the "now if only..." clause.

4. Make at least one or two concrete gains with the DN.

The DN (Disability Network) at my firm is one of my favorite things about my theory...and one of my biggest frustrations at the daily level.  I can say with complete honesty that I believe the firm as a whole truly supports the DN and would like to continue improving our firm to make the work environment the best out there for employees with disabilities (and related needs).  I can also say that my firm is not exempt from the same problems all us health activists face from society - everything from lack of comprehension, time, or interest to confusion about privacy and legal matters and yes, even including ignorance and prejudice. 

Before moving on, I want to point out something very important: consider if you would feel confident that at any place you've worked you could tell everyone you work with AND the top leadership in the office about your medical situation without putting your job in jeopardy?  Some of you may be this lucky - but not many, and even fewer if you're involved in large organizations like mine.  It's not perfect, I worry about advancement, but more because of trying to balance my own needs with work and making choices my peers don't, not because I'll be held back by someone else.  And remind me next week to write about my meeting with the TOP partner in my ~900 person Philly office, who also happens to be a pretty big deal on our national scene:)  But that's another story!

(Sorry for the segway, I just find it amazing to have the opportunities this environment offers.)  Anyway, my point is that I have some venues or opportunities through this network to start making REAL change, and I want to follow through.  In the past year I made a little bit of headway thanks to a great manager, but even then found some major issues to be worked out.  I have the background and drive to make some of these changes, but it will mean not only persistence and getting others on board - it will also mean making choices to tackle one thing at a time.  I'd prefer to clean up the big picture first, but that's not a realistic approach.  So this year, I will choose 2 - 3 events and 2 other initiatives related to the DN and make them each a success.

5. Continue to grow UII’s connection with VU.

When I was applying, Villanova touted themselves as interested in each student as a whole person and future leader in society, and also promised a perk on the back-end in admittance to the "amazing" VU network of alumni, current students, faculty, and the University itself.  So far, I'm finding these claims to be founded!  As an undergrad, I worked with a number of people and offices around campus to sort through my special needs.  One of my greatest alliances is with the Office for Health Promotion (stop there - they have an entire OFFICE for health promotion).  With their support, I've done a few things at Nova to raise awareness of Invisible Illnesses.  The most amazing, in my opinion, was when we held a special event where a physician, caregiver/friend-of, and sufferer spoke.  My pediatric rheumatologist came (she's an awesome person), Shawn spoke both from his role as my (then) fiance and as a hospital tech, and I spoke as a sufferer.  We worked with SNAP (nursing association) the Core Humanities program (central 2-part course for underclassmen) to list it as an approved event.  So yes, we bribed attendees...but that only guaranteed us just so many and we had a PACKED cinema - literally standing-room-only!  Anyway in the past few weeks my contact from Nova reached out to my friend Bridget and I about doing a new program conceptually combining the event above with some body image programming for the spring semester.  There are a lot of directions we can go, and I've been REALLY excited to start trying to think them through.  I've already spoken with WEGO Health about helping me connect with specific activists who might be helpful with these ideas, and as soon as Bridget and I can catch up we'll start really working through them.  I'm ecstatic!  But it made me realize that this connection is very real and one I should work on maintaining as I get farther from my time as a student.  Therefore, in the coming year I will try to identify up to 3 main projects which can keep me connected to VU, hopefully leveraging some of my other connections in the process.

6. Not lose my health in my activism.

This is a hard one.  I have enough trouble balancing the things I do in an average week with my health needs.  I quite literally never get enough sleep, don't usually eat properly (and forget figuring out the actual nutrition involved beyond portion size), and an exercise regime in a joke.  Naturally, special projects don't usually pop up during these 'normal' times or *gasp* SLOW, they arise at the most difficult moments.  The new project with Nova?  Sometime in February - the heart of busy season.  But when a truly great chance comes around (such as one with Nova, the DN, or some special projects with WEGO), I feel I have to take them.  I'm not in control of this world, and I can engineer when my breaks will come.  There are some I can - or must - pass up, but the big ones that can really advance UII's goals are too important.  However, over time I'm gradually being forced to acknowledge the long term effects this can have.  In pushing all my energy into the projects I do aimed at creating a happier, more peaceful, better life for people with chronic illness, I often put my own health in jeopardy.  As a teenager or in college that didn't seem like such a big deal - I'd push myself into a flare, let my mom play nurse for a couple of weeks, then spend the next few weeks trying to straighten out the mess before moving to the next one.  It doesn't seem to work that way anymore, though.  Now I find my overall functioning decreasing, not 'just' an acute flare then recovery.  So, I really don't know how, but this year I will have to start making changes so I can accomplish my goals without continuing to put myself at such risk.  (Any one have the magic solution to this one?)

7. Continue to listen for God working through me and play second fiddle to the Holy Spirit.

Last spring, I needed to leave work at a certain time one day to be at mass for a Holy Day of Obligation.  When I mentioned it to my coworker, he actually started asking me questions about Holy Days and more general topics.  When I arrived at church that evening I relayed this story to my priest, thinking I had been in such a wonderful conversation...and as I got to the end of the story I realized the mistake I had made, just seconds before the priest himself asked "and did you invite him to come with you tonight?".  Guess I dropped the ball.  I mean, I really don't think he would have come, but without a doubt, I should have asked.

I tried to learn two things from that experience: 1) I was reminded to be proud and brave when it comes to my faith so that the light I carry can shine, but moreover 2) God (or in my mind, the Holy Spirit) works through us and I must make sure I don't interfere.  Since then I have really focused on these kinds of situations (which actually come up a LOT) and making sure I am letting God work through me to bring others to Him.  So far it's going well; I recently met a woman on WEGO having a faith crisis.  Given the particulars, I thought it might be best to move along without commenting.  But thankfully I realized this was another opportunity and if I just let the Holy Spirit guide my comment, everything would be ok.  I wrote to her (telling her I would understand if she chose to delete my comment, of course) and said I had found answers to her questions that make sense to me and if she ever wanted to discuss them I'd be happy to chat.  In no time I had a new friend, a new blog to read, and a FANTASTIC conversation awaiting me just as soon as I can give full attention to this most important topic.  I know I'm supposed to be more concerned with rewards in heaven, but I have to say I feel it's very rewarding now on Earth when I can connect with someone like this.  I mean, as a health activist I'm all about making people's lives better now...this is the same thing!  This person is hurting and even the prospect of seeing her find peace (with whatever religion) is awesome.  Also, this is a task I can do which is not inhibited by my illnesses in any way!  My conditions to not create limits here; in fact, they may make my actions speak louder.  And so, this year I will continue to focus on these chances, and make sure I let my thoughts, words, hands, and actions be guided by the Holy Spirit.

I am interested in what priorities you have in your life for the coming year, especially ones that recognize your unique situation and gifts.  I welcome you to share your resolutions, goals, priorities, and wishes with me, as a comment or a link to your own post!  Also, please take a look at Janeen's original post, to which I'll link this one.  (See link in #2 above.)  Happy New Year!

December 28, 2010

Conference Panel

Some people are big on spring cleaning - something about the first breeze that doesn't chill you to the bone and little buds on naked trees brings out the inner organizer in most of us.  I love spring cleaning as much as the next person, but for me there are a few other times of year that trigger a life 'clean-up' project.  A big one is this week, after the Christmas madness and before the tradition audit busy season (because I know when I kiss Shawn goodbye next Monday morning to go to work, instead of "see you tonight" we'll be saying "see you after March"!).  Yes, I do some physical cleaning in this time, particularly trying to actually sort, fold, and organize my clothes so when I'm bleary-eyed on a Thursday morning and already 40 hours into my work week I can find SOMETHING I'm not embarrased to wear.  However, this is mostly a time for a mental airing-out; to close out all those projects I've left half-done or neglected altogether.  And so, I think it's time I blogged about my conference panel experience with WEGO that I probably mentioned a half-dozen times but never actually reported about!  (Hey, this one is only from Novebmer, my 'Suddenly Visible' experience actually occured in October...let's be happy for any improvement!)

DTC Perspectives, Inc. is an organization aimed at improving comsumer marketing through education and innovation.  In addition to their usual offerings to those in the marketing professions, they organize events to bring together professionals in various industries with experts and consumers to help them renovate their approach.  In November, DTC held a national conference for healthcare industry marketing professionals...with a special focus on the internet and social media.  A quick Google search will give you ample background on the recent discussions about the current lack (and quickening development) of regulations for the healthcare/pharma industry related to social media communications.

As part of this two-day long conference, WEGO organized a special live panel presentation that apparently created a lot of excitement - they brought in 3 health activists working in social media along with their own VP to host a question-and-answer session to be the grand finale presentation.  As it would turn out, the organizers approached us while the four of us ate lunch to ask if we would be willing to move our presentation seems a lot of people had to leave a little early to catch trains and flights home, and they didn't want to risk missing our session!

Thank goodness we had at least a short time to chat together before our presentation - none of us had met before and I really saw a huge benefit in the way we levereged each other's responses during the session (since we had already discussed most of the questions asked over lunch) instead of vying with each other (which I suspect would have been the case otherwise). 

The panel was very interesting - I was clearly the beginner in the group, which I expected:)  Not that I was treated as such, I was given the same respect as the other women and Bob (WEGO's VP / panel moderator), and even if a relative 'newbie' I'm sure I have a perspective to offer that may be useful to the conference attendees.  I've mentioned Bob Brooks, VP for WEGO (you can see his bio along with the rest of the WEGO team here), who has decades of experience inside and outside the healthcare industry.  Bob worked with us via email to get our thoughts on 3 key concepts, compile slides, and prepare for the presentation as well as moderating the session.  I also got to meet and connect with two more experienced activists than myself - Lee Ann Thrill and Lisa Emrich. 

Lee Ann authors The Butter Compartment - her blog (and related network) about life with Type 1 diabetes (the title is a reference to where in their refrigerators many diabetics store their insulin - once I found out what it meant I think it's extremely clever).  One of Lee Ann's projects that I find most interesting is her art made with materials such as glucose test strips.  She repurposes a product vital to living with her chronic illness but which evokes a real love/hate relationship for most diabetics in a medium she uses to communicate with the rest of the world!

Lisa authors Brass and Ivory - her blog about living with MS and RA.  Lisa also is the driving force behind an MS Carnival of Bloggers and has begun venturing into Vloging.  The title of her blog refers to her livelyhood, playing and teaching music!  It logically follows, therefore, that she also explores the ways music can be used to help those with a chronic illness.  I had the added pleasure of spending a little extra one-on-one time with Lisa after our panel presenation when I dropped her off at the train station (since I drove up to the venue).  Another wonderful in-person bonding session brought to me courtesy of WEGO! 

If I ever someday come into some phenomenal financial windfall, where I don't have to worry about earning a living and can pursue all the glorious academic pursuits my heart desires, I think I'll have to do some real studies on the whole networking phenomena.  It's absolutely fascinating to me the ways my in-person connections led to my web connections which REALLY led to an explosion of other web connections...and all roads led back to more in-person connections!  For someone who avoided as many networking events in college as humanly possible, I really have come full circle.  I am very grateful for all the people involved in my (continuing) growth, but especially the person (whose name is now lost in the abyss of my bad memory) that gave me the best advice I've ever heard: if you're passionate about something or have a dream, talk about it to everyone you meet at every chance you get.  You never know who's going to have the connection, spark, or resources you need to get to the next step!

December 21, 2010

God Rest Ye Merry Sjogren's Gals

Many of my fellow Sjoggies have been quite busy posting about their Christmas capers: baking cookies, concocting crafts, decorating homes from top to bottom...not to mention shopping and shipping, and I'm pretty sure it's just a matter of time before someone goes caroling!

I'm proud to say, I did get something done these past few weeks, working the internet machine to take care of some shopping.  Unfortunately, I have to have packages delivered to my mom's (they seem to *walk* from my apartment so UPS/FedEx won't even deliver here anymore), and for some reason many of my orders shipped each item separately.  My poor paernts kindly gave a foster home to my growing gift pile until I could get there on weekends to empty their "storage wing".

Naturally that didn't go entirely smoothly...something I was excited about sold out before the paycheck from which I had budgeted the purchase, and the item ordered for our dear little midget grandmother was way bigger than it appeared online (which prompted a manic attempt to exchange that led to a return and a mall-wide hunt for a replacement).  Shawn's always a bit tricky (as evidenced by the bag of his birthday presents from June sitting next to my coffee table), and the men in his family are wonderful guys but a disaster to shop for.  But, at this point, there's just a few odds and ends to still pick up and you can rest assured they will make it onto a full-blown Honey Do list tomorrow:)

This week isn't quite as crazy at work as the past few months have been.  I'm working on 3 clients, yes, but because of engagement timing I'm actually getting home at normal-people hours!  Yesterday that meant dinner at home with my husband at a NORMAL TIME for the first time since the summer - an increasingly rare treat that we both needed desperately. 

Tonight, Shawn was running his usual shift at the firehouse, so I decided to be productive.  I had driven to the subway terminal this morning (the *lovely* bus that picks up half a block from my house ran early, and thus I ran late), so I took advantage of having to drive home to stop at the drug store and wipe out the balance of our health flex spending account.  I'm kind of proud, actually, I thought to stock up on seasonal essentials - TheraFlu for me and Mucinex for Shawn (store brands, of course), plus some Sjoggie essentials (nighttime eye gel, enamal-repairing mouthwash, and pain relieving cream).  Now had I thought to buy tissues, I could have called myself "smart".  Oh well, can't win 'em all:)

Given the freezing weather, that would have been enough for me, but when I got home I found a puppy with a slightly upset tummy who desperately needed a good saunter around the block.  We'll save the details of how she got spooked and made me carry her half the way, only to drag me around an extra block when I put her back down.  When we finally came back in I went to change, but when I took off my work slacks and reached for sweatpants, I was shocked to see my knees and lower legs had turned an intimidating shade of red from the frigid night air!  I have one of those nifty thermometers that takes your temperature just from your skin (they advertise using it on your forehead, I find behind my ear to be more reliable), and have found the added benefit of being able to get a reading on parts of my body to try and link up circulation problems with specific pains.  So, I took my temperature (a little low from the cold, 97 point something)...then that of the skin on my knee...71 degrees!  I'm literally surprised I don't get frost bite sometimes.

As if all this hullabaloo of drug-store visiting and puppy-walking weren't enough, I was determined to do at least one more thing.  I desperately wanted to wrap presents (especially the ones for my nosy husband).  So, out came the paper, scissors, tap, metalic ribbon, and every box that had been convoyed from my parents' house in the past month.  I have a thing for making little decorations or unusual wrapping techniques out of odds and ends of the wrapping paper, so I let my Christmassy spirits soar for an hour or two.  I have to say, I didn't do half-bad:)

But wait, I think I forgot something...the shopping and driving and walking and freezing and sorting and wrapping plum tuckered me out, before I could pick up the mess I made in the process.  I believe this picture captures the scene my husband walked into after his shift:
For some reason, Things Remembered felt the need to pack that tall box you see with a teeny box you don't into the big brown box with all that paper as the filler.  I swear it was like pulling a clown's hankerchief getting it all out!

The thought occured to me, I really should clean this up.  That would be finishing the job, afterall, and I do love a job that is complete.  But...I shopped and drove and walked and froze and sorted and wrapped...and, well, as they say in Blazing Saddles, "damnit, I'm exhausted"!  The puppy's too sleepy to get into it...and Shawn does have off tomorrow...and I don't have room in the recycling bin to fit it right now anyway... it's clearly the only option to leave it be for now!  I have to work tomorrow, afterall, and those nearly-frost-bitten knees are starting to now feel hot to the touch.  (I can rationalize with the best of them:).)

And so, in true Julia form, I leave you with one more picture.  I call this, "A Sjoggie at Rest Will Stay at Rest; or, 'God Rest Ye Merry Sjoggie Gals'"!

Merry Christmas to all, and to all, a good zzzzzzzzzzzzzzzzzzzzzzzzzz.........

December 20, 2010

Suddenly Visible

I have invisible illnesses. I hear you already - "yes Jen, we ALL know that". But what I mean is, I'm USED to them being invisible, to looking 'normal' most of the time. I think we all know that the option to (sometimes) blend in can be useful.

But tonight, I lost that option. Maybe it was the fact that I wore dress flats all day (no cushion), or the bug that's robbed me of my appetite all week, or the cold snap that's been sandwiched between heat waves. Maybe it the toll of my recent anxiety problems - or maybe my joints just thought it would be a pip to mess with me. Whatever the cause, I know the result, and the result was a very public bout of suddenly becoming visible.

I guess I've been in a mood lately, and when I'm in a mood Shawn often resorts to forcing me to go shopping.  Strange as that sounds, he's an excellent shopping companion (even for shoes).  When I'm in a certain frame of mind (usually heading toward depressed), I'll do things like go to the mall, look at EVERYTHING, try on a million things, finally find the perfect [fill in the blank]...then get worked up trying to make a decision and walk away.  It used to drive my mom nuts.  I can't entirely explain it - I think it's a combination of feeling overwhelmed about the decision to spend money, guilt (call it pre-shopper's remorse), and even something that might be called self-loathing (I don't deserve [blank] for some reason).  Not an entirely awful frame of mind - it's probably better in the long run to avoid buying anything when I'm depressed than to engage in retail therapy - but sometimes it becomes a real problem, like when there's something I actually need.

So with my intermittent flares have come intermittent attitudes, and today Shawn shlepped with me to Target.

Target's usually a safe choice - I always find something, and something cheap.  At minimum, they always have cute socks in their dollar section and even the ones that look too small stretch for my clod-hoppers.  Cute socks always make me feel better.  Beyond that, they usually have something else that feels like a great bargain which also has a healing effect on me.  Lastly, they have things to entertain Shawn, so he basically gets his 'reward' while I'm getting my 'treatment'.

Shawn and I arrived and parked in a handicapped spot (side note - I just want to mention that in my experience, Target always has a good number of handicapped spots).  No muss, no fuss, just parked and went in.  We grabbed a cart - you never know what goodies you might find you can't live without in that store, best to be prepared to shlep them - and began a lap around the building.

A downside to shopping (one I'm sure you're all very familiar with) is that it involves some activities that aren't really Sjoggie-friendly.  Walking, standing, squatting, leaning, lifting, reading little print under big bad flourescents, even the issues that come with trying on clothes.  In particular, I've been finding lately that while walking too much can be an issue, the real risk is in standing.  I suspect it has something to do with the muscles around my joints and along my spine not being strong enough to adequately support my weight without compressing my joints.  Well sure enough, after lingering at a few displays in Target, my hips started to go.  A few minutes later the pain and stiffness began working its way up my spine.  And then it happened.

Clutching the handlebar of the shopping cart as a makeshift walker, I realized my legs weren't moving as fast as I willed them to.  Each step took twice as long as normal...then three times as long...and became more of a stiff-legged shuffle than a step.  Hunched over the cart and walking like a Barbie doll (the old ones, that did NOT have bendable knees), I began to notice something...strange...

My mom has significant medical problems herself, including limited mobility.  When we go to a store, the first thing she does is get a cart, and then as we go through the store she is conscious to try and stay to one side of the aisle, not stop in front of a walkway, and so on, because she knows she moves slowly and allows people to go around her.  When people do go around, there are some VERY subtle behaviors they unknowingly exhibit.  They usually stop their conversation, don't make eye contact with my mom or I, and walk with away with their heads just a little lower than when they approached.  My interpretation is that they are trying to be kind - they stop talking so it doesn't seem they are trying to rush her aside, avoid eye contact because of the obvious embarassment, and let their heads hang a bit as they fleetingly contemplate that it could be them someday.  We all do it, and my mom and I usually don't think too much of it.

As I Barbie shuffled my way down an aisle at tortoise speed looking for Shawn, I noticed someone pass me.  Then someone else passed me.  Then the two people walked side-by-side away from me.  Funny, I thought, I wonder why they walked by in single file...and I hadn't heard them talking as they approached.  Wait a minute...I turned around just in time to see two more people approach, fall silent, one by one pass me, and reunite as they walked, it can't be...yep, their heads a little lower than when they approached.  And don't ask me if they wore glasses - I wouldn't know, none of them made eye contact with me.

Oh My God.  Ohmygodohmygodohmygod.  Nonononono it can't be. 

Don't get me wrong, my fear wasn't "I've become my mom", it was "I'm visible.  All these people can see something's wrong".  I instinctively tried to straighten up, to move faster, or even to simply disappear down an aisle until I could pull it together and pretend to walk normally.  I can push it, get out of here, then limp to the car.  Or so I thought.  It seems this was one time I just did not have control over my body.  Like it or not, I had no choice but to slowly limp my way out of there, leaning on the cart.  Staying to the side so people could pass me.  Doing all the little things my mom always did to signal others that I understand why they're passing me and there's no hard feelings.  Except there were hard feelings - not toward other shoppers, they were being respectful - but toward my body, to my obviousness.  My cloak of invisibility fell off and I was exposed for the disabled person I was.  Unlike the times I choose to hang up my cloak, put my limitations on a platform, shine a spot light and show the world the Sjoggie Within, my cloak was torn from me and left in a crumpled pile on the floor.  Far from the carefully considered audiences I'm used to facing, or at least the faceless multitude who might "see" me on the web, there were real people, strangers, and possibly even neighbors, who were seeing a side of me I usually hide.

If I anticipate something like this happening, there are things I do to have some safety nets in place.  I usually keep Shawn closer to me instead of agreeing to find him in another section, hang near a bench or chair display, and so on.  Maybe I can't always avoid having an issue in public, but I can put up a good smoke screen.  Well, not this time.

I wasn't even JUST visible.  That's scary enough, but like I said there are times and situations I choose to reveal those things, where I'm in enough control to protect myself.  It's that I was SUDDENLY visible.  I didn't prepare for it, didn't even see it coming - it just happened.  And the reaction from others in the store said it all.  Instead of the usual skepticism I get for using a handicapped tag or taking advantage of whatever little conveniences are usually skipped by the young (elevators, carts instead of baskets, and so on), I was ACCEPTED as a disabled person.  Boy, if ever there were a time in my life I was NOT looking for acceptance, this was it.

I'd like to say I learned some great lesson from this.  That I came to a deeper understanding of my own body's battle, that I realized the need for more awareness in the general public, or that I found peace with my limitations.  But I can't, not yet.  I'm confused and raw.  I feel like a child walking into a new school - no one knows why I am the way I am, but boy can they see me clearly.  There's no background, context, or developed cloud of information to shelter me.  It's not "oh there's Jen, she has autoimmune conditions and reacts to the weather but sometimes she's fine", it's "that woman must have some disability, lets go around her so she can stay at her own pace".

And I suspect this is the beginning.  As I age and continue to live with the stresses in my life, my invisibility will fade.  I realize it will be gradual over a long period of time - that I'm not going to wake up tomorrow needing leg braces and crutches.  But it will happen (to some extent).  When I went from kid to teenager, and teen to college student; made those transitions from Miss to Ma'am and girl to lady, I remember moments when I said "well, I guess I really am an adult now".  Driving myself somewhere new the first time, taking my dad out for Father's Day and paying with my credit card, or figuring out how much I could afford to pay for rent on a new apartment - these were 'adult' moments.  Somehow I can't shake the feeling that this sudden visibility was an 'adult' moment in my medical lifetime.  I may have known in my head that gone are the days when I could get a sunburn, go outside in November without a jacket, or pull an all-nighter, but that's not the same.  I knew I couldn't do those things, so I didn't try, and therefore avoided proving it.  But I didn't know I wasn't going to be able to finish my trip to the store today.  That there would be a day when I couldn't make my body work temporarily out of sheer stuborn determination and accept the 'punishment' that would come later.

I have to say, growing up sucks.  Now pardon me while I try to put some velcro on this cloak so it can't slip off so easily next time...which just might work, if I could see it myself.