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.

November 27, 2010

The Diseased Chicken or the Anxious Egg?

I've just joined a brand spanking new Ning group: Una Vita Bella - A Beautiful Life, created by Amy Kiel.  Amy is a health activist for many issues, but her new group is focused on chronic pain sufferers and also the mental health issues we often face.  (I suggest checking it out, it's very new so there's a lot of room to help develop it into what you might see missing in other communities on the web.)

In her welcome, Amy points out that many people with chronic pain also live with mental health issues.  Sometimes the connection is (at least to us) obvious and logical - who wouldn't develop depression if every day included pain, and if yours is one of the many conditions without adequate treatment (and forget cures), well, I'd worry if you didn't get depressed.  Not to mention, that depression (accute or ongoing) isn't the only issue - anxiety, anger issues, and so much more comes with the territory, and some medications we take exacerbate things further.  Oy!

But, at least for some of us, can we definitively say that our pain or condition CAUSED our mental health problems?  I've started reading a book, "Why Zebras Don't Get Ulcers" (see it on Amazon here).  It discusses a theory I've heard before but hadn't explored: our bodies weren't made to withstand chronic stress.  When we subject ourselves to ongoing mental stress, our bodies have to manifest it somehow.  I think it's likely we all agree that mental and emotional stress has very real physical manifestations (I just blogged about my own stress-flare on WEGO), so this sounds quite logical to me.  The beginning of the book uses the zebra as an example contrary to humans: the zebra experiences intense stress - such as an attacking lion - and reacts immediately with the ever-popular fight-or-flight response, including plenty of adrenaline and specific muscular and synaptic processes.  Once it's gotten away, the stress is over, and the body can return to homeostasis.  Humans however, have the advanced mental capability to think abstractly, which means we can imagine "what-if"; we can ponder the future.  We can imagine the lion coming over the horizon while I'm at this watering hole...and therefore, we can worry. 

Physiologically speaking, this ability to worry causes a similar reaction to the immediate stress of a zebra fleeing from a lion...except it never ends.  We all know the old gags about stressed businessmen chugging antacids for their ulcers...but there's some scientific support for this connection.  And moreover, someone once pointed out to me that we now have so many treatments for ulcers (or perhaps our bodies just adjusted to this stress manifestation), that the stress-illness has to go somewhere else...and where more logical than a system in our bodies?  One that relates to sensory transmission?  Yeah, that's right, the same systems that convey pain.  (I suspect Miss Julia may have some technical information on this that I could never understand on my own - I'll have to check her back entries soon to see if she's touched this topic yet.)

So this brings me to my real question: which came first, my illness or my anxiety?  I was actually diagnosed with anxiety when I was in first grade (yes, I mean really diagnosed, not just people saying I was anxious).  I wasn't diagnosed with my chronic conditions until I was 15.  But then again, I had clearly related symptoms back to age 2...but on the other hand my conditions didn't really "bloom" until I was 14 (when the sun triggered my conditions).  And yet, I was diagnosed with anxiety at about age 7...but my mom has stories from my infancy about how anxious I was (even one about the nurse in the delivery room commenting on my "worried worried face").  So, was I anxiety-ridden or disease-ridden first?  Can I identify when exactly each my anxiety or my health conditions truly started so as to determine which came first?  If I wasn't so anxious, might my other conditions never have flared?  I didn't develop such serious conditions, would I have "outgrown" my anxiety?  And moreover...are all my questions only serving to increase my stress and ultimately perpetuate the cycle???

Of course, there's other background involved in the whole whole life has just been a big pile of stress - severe family disharmony, financial problems, my brother's Asperger's and its effect on my life, my parents' health problems, and so on.  So goodness knows I would have been stressed even without my own medical mess.  And there's a LOT of support for familial links for both the medical and emotional/mental health problems.  So I don't suggest dismissing these factors or placing all blame on one factor...but I think it bears discussing. 

So I pose the questions to anyone open to this discussion...did you have any mental health concerns before your medical issues appeared?  To what extent?  Do you have any additional information missing from my post?  And most interesting to me - what long-term effects do you think stress can have on humans?

November 24, 2010

Life with a Chronic Illnesses: The Pirate Prognosis

Bear with me.  I'll admit, this one's going to sound like a groaner up front but I think you'll enjoy it, so just hang in there...

As you may have noticed, I've had some ups and downs lately.  As you CERTAINLY know, that's par for the course with any chronic condition, and one that responds to changes in weather, stress, and everything else under the sun guarantees at least a few of these trips in a year.  When these loopdeeloops show up, we have to keep relearning some adaptive behaviors (especially if you're like me and seem to forget these lessons). 

Recently, I was discussing some of these refresher lessons with my husband and came to a revelation.  Chronic illnesses may each have a different prognosis - highly controllable or highly unpredictable, systemic or focused on a specific area.  But as far as I can tell, all chronic illnesses share a common fate.  We must all Adapt, Readapt, Rinse, and Repeat....or ARRR - the Pirate Prognosis!

(Stay with me, I warned you it was a corny start...)

Take the seasons for example.  Here in the US, winter is coming.  We've already had a few cold snaps, and at this point even 'seaonsal' temperatures leave me shivering me timbers (wow so I guess I'm going to milk this analogy for all it's worth).  Having Adjusted to the way my body responds to the cold, I have my new gloves for the year and am on the hunt for a replacement for my favorite but misplaced heating pad - these are things I've learned to Repeat every year.  It's not enough to guard against cold Raynaud's hands or bronchitis for one season - I have to keep doing it.

I've been through 20-some-odd winters of course, most of them with at least some major symptoms, and nearly a decade since my diagnosis.  And yet, each year I discover some new problem I have to cope with - and this year will be no exception.  I've already begun facing one new issue: this is my first winter (well, any season) on Prednisone (as well as my first where my symptoms are so progressed that I require Prednisone in the first place), and I'm finding myself surprised again.  I thought I had this figured out!  I thought I knew what I needed to do and was doing it already!  I had adjusted!  But now I have to Readjust.  Oy.

Change is part of life.  We all had to face this when we were diagnosed, or learned a friend or loved one received a name for their condition.  Certainly everyone's body will change as they age - and ours will change in ways we may not have expected.  Even the reaction we get from people around us will change...often in ways that sadden us (lost friendships, ungranted opportunities, etc), but undoubtedly also in positive ways (increased awareness, curiosity instead of condemnation, and so on).  If we can anticipate and accept these changes and the ways they will force us to respond, we can also accept that simply caring for ourselves physically will require ongoing evolution. 

Without a doubt, I'm usually not too thrilled about this fact myself.  I'm an accountant - an auditor, yet - I very much enjoy learning a pattern I can repeat year after year.  But I also see far more benefit in accepting the need to A-R-R-R and allowing it to help me move forward instead of stagnating in a mournful, stubborn stalemate.

Lastly, I'd like to take one moment to acknowledge that the Pirate Prognosis is a highly communicable condition!  That is, those without chronic conditions of their own but who live with, love, care for, or interact with us are just as vulnerable to needing to A-R-R-R with us.  My husband and I started dating in January many years ago.  He was a 17 year-old high school senior, worried more about what role he'd get in his last high school play than arthritic joints and the risk of gestational Lupus.  Within six months, he got into college, graduated high school, and found out his peppy little freshman girlfriend was diagnosed with life-long autoimmune conditions that were spiralling out of control.  Talk about an Adjustment!  That was certainly one most of us wouldn't have accepted (thank God he did, I would be no one and nowhere without him).  And of course, it wouldn't be the last time he had to A-R-R-R...added diagnoses, extended college plans, redefined "baby time lines"...not to mention his own life with redeclared majors, career changes, and so on.

I'm sure my parents didn't expect to have a child with chronic infections, nor the next with behavioral barriers.  They didn't count on childhood owies becoming adolescent ER visits or adulthood headaches.  Maybe they didn't anticipate activism either - in their children, or in themselves (for they truly were our first advocates and still don't back down) - and I hope that at least this rise to our challenges is their silver lining.

There are many groups of people I could mention, who have probably faced this Pirate Prognosis: friends (lost and lingering), coworkers, teachers...even classmates, Facebookers, and web surfers who may have found any of us.  But I think I've taken a long enough walk of this abruptly short plank (sorry, had to get one more in), and you get my point.

I think for the next awareness event we should incorporate eye patches and go around proclaiming the motto "ARRR"!!  Hm, I wonder if we could train a parrot by then...

October 29, 2010

A Tree May Grow In Brooklyn - But Friendships Grow In Philly!

(Since WEGO had a lot to do with the point of this post, I wanted to call it "Here 'WeGo' a-Wassailing"...but Shawn vetoed that on the grounds it was too corny to live.)

My mom always said I was her Francie, the main character in "A Tree Grows in Brooklyn" (read about the book here).  Determined to end up with the life she wants regardless of the one she starts out with, Francie bears a lot of responsibility for a lot of people.  But, Francie finds an escape.  She learns to read:

"From that time on, the world was hers for the reading. She would never be lonely again, never miss the lack of intimate friends. Books became her friends and there was one for every mood."- Ch. 22

I've always been a voracious reader.  I credit my Pop-pop, who spent hours with me on his lap reading about Snuffy on Sesame Street, puppy dogs who got in trouble, and an alphabet book with an awesome jello mold (followed by a persuasive appeal to my mom to make some for us).  I still remember how proud I was the day I climbed in his lap and for the first time, read to him.  Over the summers, I would get the reading lists for other grades and see how many I could finish before September.  Books got me through a phase where I was sick of happy endings...and other books stepped up when I was ready for them again:) 

But books aren't the only things to read.  I was never that into magazines - too many ads, for one.  And forget newspapers (the folding and unfolding and noise and ink and smell - it makes me sneeze).  But the there's a happy medium!  Shorter than books, but if you think about it, links are almost like optional chapters.  I mean, if you WANT to read more you can follow link after link after link, but when you're ready to stop you can do so without feeling like it's incomplete. 

Then there's the real kicker - books, by the time you read them, are a done deal.  The plot's been resolved, the characters have run out of life, and frankly the best ones leave me deflated knowing there's no more to the story.  But the internet has BLOGS - which are by and about LIVE people, who exist NOW, whose lives are ongoing stories with twists to come so great no human author could have fit it all into a 'book'.  Bloggers are my PEERS.  They tell me their stories...and sometimes listen to mine...and then something never before seen in the history of the written word happens - our stories morph.  They piggy-back off each other, and eventually become intertwined.  There's truth in the line from "Wicked": "Because I knew you, I have been changed for good".  Whether we support, anger, respect, or despise each other, we have had an impact on one another and anyone else who may have stumbled into our "storylines".

Which brings me to Friendships in Philly.  If ,because of reading, books themselves became Francie's friends, it was reading that has begun to open a new world to me as well, centered on blogs and social networks.  I began blogging for Invisible Illness Awareness Week 2009 (as per my first post, here), which is a national awareness effort pioneered by Lisa Copen, Founder of Rest Ministries.  Lisa's annual event gave me the opportunity (and push) I needed to get off the ground.  Right away, I stumbled across Julia, author of Reasonably Well - and I truly know that "because I know [her], I have been changed for good"!  I see Julia as a more experienced and (believe it or not...) calmer, more peaceful version of myself (or at least who I want to be).  I'm sure right now Julia and her loyal friend/companion/guardian Therese are already laughing at that concept, but believe you me - Julia's craziness is educated and responsible...mine, not always so much.  But, I suppose that's what 'disgusting youth' will do to a person...but I digress:)

Julia blogs about everything - and never makes me depressed.  Aside from her downright endorphin-inspiring recounts of BICJ run amok, schnauzers in control, and surprise appearances by cooked baby octopus, she manages to talk about problems without dragging you down.  There's the middle ground posts - for example, escapades that are actually the product of brain fog that are presented in a way that makes the problem relatable but the outcome laughable.  And even when RN Julia makes an appearance with scholarly articles about scientific studies of causes, treatments, and disease progression, I still feel that life is worth living.  If it weren't for Julia, I guarantee I wouldn't still be blogging.  And I'm thrilled to still be here because I've continued to meet amazing women in many stages of their lives, all willing to share their successes and mistakes as well as my emotional lurches!

Eventually, the social network effect introduced me to a woman who pulled me into a new network and a new title - WEGO Health is what I describe as Facebook for Health Activists (wadda ya know, I'm a Health Activist).  Here, ambitious, bright people with any and every medical background imaginable electronically congregate with amazing results!  Through my involvement with WEGO, I've already been given the opportunity to participate in a live panel in just a few weeks...and perhaps even more valuable to this Little Sjoggie...they brought my Julia to me:)  Miss Julia (with unofficial life coach Therese) came to my dear Philly to shoot a special feature with a world reknowned Sjogren's expert (and one of my former doctors) can read more about her project at her blog linked above.  After learning so much about each other through our blogs and other communications, we simply had to meet.

Before I knew it, this woman who existed only in my virtual world, who I abstractly knew really lived 3,000 miles from me but had never, ever imagined I'd meet, was in the middle of my stomping grounds.  As usual, Julia had the perfect plan- we would all go to mass together then sup while pheverishly cheering on the Phillies!  There's not much I'd rather do than share my beloved hometown church and head out to enjoy the game...even if Julia and Therese had the unfortunate luck of finding out what a true Philadelphia sports fan feels like when our boys narrowly lost the series.

I hope you'll indulge me for just one moment of sappiness...Shawn and I picked up our guests at their hotel in the city.  I walked into the lobby and on cue, a dark bob popped out of a hidden corner of a sofa in the lobby...a smile spread across her face...and I swear it was one of those moments straight out of the movies.  I finally got to see, in real life, this woman I was sure I already knew, and I surprised I managed to not cry.  (And for the record, anyone who could pull off passing for a 30-something when I also pass for the same age group has a lot of nerve accusing me of 'disgusting youth'.)

Anyway, within moments the four of us were off and rambling, cramming as much bonding into a few hours as humanly possible.  I learned so much from these two travellers - about them personally, their families, and technical information on everything from medical facts I should know to swapping awareness ideas.  I suppose it's true that an age gap among us exists...but no one would know it.  I'm sure our waiter assumed we're all friends perhaps from work or just close neighbors, people who have grown togther through shared proximity.  Only we knew the far more amazing truth, that it was not proximity, but shared experiences that brought us all togther.  Experiences, Sjogren's, the web, and of course God (all the more reason praising Him together was the perfect way to kick off our night)!

Granted, I am sad that I had to return Therese and Julia to their hotel and allow them to soar away.  I would much rather that they would have been so captivated by the Philly suburbs they'd insist on moving here immediately, and send for their husbands to pack everything while they went house hunting:)  Let's face it, I like having people close by!  But I learned something so significant from this whole experience that it turned my potential depression into a minor buzz-kill - these women are real.  They exist on this great big rock in the universe, just like me.  And if they could get here, I can get there (or we can all get to a tropical resort serving mango margaritas and lemon drop martinis...not a bad plan if I say so myself...).  And, if they could be brought to my doorstep as easily as a much-anticipated Amazon purchase by the grace of WEGO...well, the whole world is open!  I'm going to that conference...I wonder who else I'll meet there!  Maybe I'll meet someone down the line through WEGO or another effort that I didn't even know online before, and the whole thing could happen in reverse!  It's amazing to me, there are opportunities out there I hadn't even imagined.

"Growing up spoiled a lot of things" (ch. 28) for Francie.  In many ways, I can relate - major bills, family planning, life-altering decisions, and of course progressing chronic illnesses can make you feel this way.  But if Julia can have such a vibrant life, full of friends, family, optimism, fun, and new opportunities every day, so can I. 

Ever since being diagnosed, I've had a firm view on life.  I want to have as many experiences as possible - to learn and do and feel everything I can.  So I guess, I really am like Francie:

"Let me be something every minute of every hour of my life. Let me be gay; let me be sad. Let me be cold; let me be warm. Let me be hungry...have too much to eat. Let me be ragged or well dressed. Let me be sincere-be deceitful. Let me be truthful; let me be a liar. Let me be honorable and let me sin. Only let me be something every blessed minute. And when I sleep, let me dream all the time so that not one little piece of living is ever lost." (Ch. 48).

September 21, 2010

The Story of a Flare

Inspired by my flare-fried emotions and Simon & Garfunkel's "The Sound of Silence", this probably more poetry than a performance piece, but whatever it is, it's here for you.

Hello Illness, my old friend, I’ve come to fight with you again,
Because inflammation ever creeping, has stolen health from my safekeeping.
And the tumid, aching tendons I have strained
Still remain; with them, the need for patience.

In mental fog I softly groan, a haze induced by Prednisone,
Imprisoned in an unrelenting cramp, I dread the winter’s weather – cold and damp,
My eyes burn still, Sicca Syndrome worsened by sunlight
A Sjogren’s plight. And wearing thin is patience.

When through blurred vision I first saw, other people – many more,
People suffering without speaking, others passing by without listening,
Patients reaching out needing hope, support, and care.
If love’s out there, we’re running out of patience.

Our inner strength en masse we’ll show, despair fades when awareness grows.
See us now, right in front of you! We’re all around and everywhere with you!
A few can see me now, but so many move on by,
I heave a sigh, and search my soul for patience.

For a moment I watch the world, my former goals within it twirled,
Pretending that inside I’m not mourning the loss of plans that I had been forming.
I know I’m blessed by God in so many precious ways,
But still it stays – my endless need for patience.

August 30, 2010

Chronically Connected

It's virtues are extolled: immediate access to information, improved work/life balance by working from home, and the ability to connect with others around the globe at a minimal cost.  It's also accused of great evils: removing the need for face-to-face communication, facilitating white collar crime, and leading to the muscular atrophy of an entire generation.  What else could have this affect but the World Wide Web!

While it's true, the internet can and is used for the "wrong" reasons and with bad results, the same can be said of religion, airplanes, or freedom of the press.  What's the common link among these ideas and inventions?  They ultimately become tools in the hands of human beings - well-intentioned but imperfect Mankind. 

But just as religion gives billions of people a framework for life, airplanes deliver food and supplies to disaster zones, and free press led to the birth of our nation, the internet gives millions the resources we need to improve our lives in ways never before imagined.  It would have taken our unplugged ancestors a generation or two (or more) to assemble - let alone process - the volumes of information we can now find and search in just a few seconds. 

This access is wonderful, and a gift I make use of many times each day.  However it is not, perhaps, the greatest gift the internet provides. 

Humans are social creatures, hard-wired to need interaction with others - also known as a 'community'.  If you don't believe me, go ahead and use that powerful internet search tool to read about otherwise healthy babies who die in understaffed orphanages for lack of touch or how solitary confinement causes psychophysical distress by denying human interaction.  Or, check out this scholarly article about the science underlying this phenomenon.

We seek to be both one of a million and one in a million; that is, we want to be simultaneously reassured we belong and that we are unique persons whom no one could replace.  But we wouldn't know if either goal were met without KNOWING and RELATING TO other people!  And so we join clubs then seek a leadership role, attend block parties and talk about our latest vacation, or play a team sport and dream of being named MVP.  For the chronically ill, I've found that this mindset takes on a very specific form.  We want to find others with the same symptoms or diagnosis as ourselves, and upon making this connection we immediately begin spouting off our personal stories, complete with symptom progressions, medications, prognosis, and views on the future.

Knowing that I am one of a million (or, in my case with Sjogren's, one of 4 million) Americans with my diagnosis is important to me.  It means information may be available about how to cope with many of the problems I face, and that it's been around long enough for there to be data for use in framing a prognosis.  Moreover, because I know other Sjogies exist, I am guaranteed to find people I can talk to who I know will understand what I mean when I try to describe weird symptoms or processes I go through, and if they understand that must mean I belong.  At the same time, finding these people reaffirms that I am still one in (four) million - we may have the same diagnosis but none of us have exactly the same experience living with it.  There's the obvious differences - severity of symptom progression, comorbid diagnoses, or age - and less obvious ones, e.g. personal stances on specific treatments or even reactions to the same medication.

To my point, social networks or interactions are part of human nature, and take on a prime importance when people are faced with challenges.  Chronically ill persons face the same challenges as the rest of society, but must also cope with their special challenges every day at the same time.  Therefore, it stands to reason that these people experience a greater need for - and find greater benefits in - social venues.  And yet, social excursions often require people to do the very things that are problematic for this population.  Mobility problems, unpredictible symptoms, extreme fatigue, and "brain fog" (or reduced ability to think logically) are just a few roadblocks.  When added to the plethora of 'extras' most of us carry (medications, comfort aides, water bottles, sweaters, joint-support paraphenalia, etc), it rarely becomes worth the effort.  And to top it off, a lot of chronic illnesses and the methods used to treat them make the patient susceptible to contagious illnesses such as colds, flus, and infections.  It's a wonder we don't all become hermits!

But, without these social connections, we are left very vulnerable in every way.  Ill or not, we must have information, access to resources, and support.  We all generally find a way to get to the doctor or pharmacy and meet our physical needs, but for years we simply couldn't find a reasonable way to meet our emotional ones.  Which brings us full circle, to the World Wide Web.  Now, we can find each other.  Now, we can join groups and discussion boards that will fit into our schedules instead of disrupting them.  If I can't sleep at midnight but crash out at 2 in the afternoon, I can post something at night and read someone's response the next day without us needing to be present at the same time.  Instead of being subject to the opinions and educational limitations of one doctor I find the energy to see, I can scour the web for more ideas and insight and take an active role in my care.  And even to my own surprise, I can develop REAL relationships with people I've never met (and probably never will).  A woman undergoing chemo in Alabama is now just as important to me as people who live in my town.  Another woman 3,000 miles away was the first to tell me when she found my group in a newsletter (that I don't even receive and would never have seen on my own).  And, I hope, my stories and advice may be positively influencing someone out there who might never have even pursued treatment if they hadn't heard that something could be done, or know that I care when the 'real' people in their lives turned their backs. 

And so, to the many who are trying to unplug, I tip my hat and offer best wishes that they find the peace of mind connectivity may have stolen from them...and I turn, pick up my laptop and BlackBerry, and settle in to enjoy the gifts of being Chronically Connected.

August 23, 2010

IIAW 2010: 30 Things...

You may recall, I began this blog ast September as part of National Invisible Chronic Illness Awareness Week (IIAW).  Well, it's nearly that time again!  This year, the National week will be September 13-19, 2010!  As part of the kickoff, Lisa Copen (founder of both IIAW and Rest Ministries) has brought back the HUGELY popular survey about our unique experiences with chronic illnesses.  I encourage you to fill this out for yourself (no matter what diagnoses you may have) and repost.  If you do, remember to put a link to your post on Lisa's IIAW website!
30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Sjogren's Syndrome, Localized Scleroderma, Fibromyalgia, Dysautonomia, Osteoarthritis, Raynaud's Phenomenon.

2. I was diagnosed with it in the year: 2001 when I was 15

3. But I had symptoms since: 1988 when I was two

4. The biggest adjustment I've had to make is: I adjusted what I wanted to do with my life – now I'm focused on building UII into an established not-for-profit organization.

5. Most people assume: My age means my conditions don't affect me as much as they do older people.

6. The hardest part about mornings are: Moving.  Most of the time I'm stiff and my upper back is messed up from the way I slept.  Sometimes I have morning stomach aches and am very nauseas, especially if I woke up too early.

7. My favorite medical TV show is: I can tolerate Royal Pains but that's it.

8. A gadget I couldn't live without is: Microwavable heating pad.

9. The hardest part about nights are: Temperature and humidity changes from the daytime (could be getting better or worse, a change is hard no matter which direction).

10. Each day I take _9 (not counting pain killers)_ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: had success with a combination of chiropractic adjustments, moist heat therapy, and mild electro-stimulation for my back (though the benefits were absolutely systemic).  However, the practitioner I went to closed and I haven't found a doable replacement.

12. If I had to choose between an invisible illness or visible I would choose: I wouldn't pick solely based on visibility.  Ask me about what the illness affects, I'd have an opinion.  But the entire point here is that invisible illnesses are JUST AS debilitating as visible ones, not that they're MORE severe necessarily.

13. Regarding working and career: while I have revamped my long-term career goals to be focused on my conditions, in the meantime I'm working a demanding fulltime job.  Most women I know with similar conditions are middle aged or older and had to give up their careers.  I was diagnosed as a teenager and had to face what if I never got to start my career.  I've managed to get to the starting line but am competing against smart young people usually without chronic complications, and every day I make it to work I know the rest may be numbered and my life could flip at any time.

14. People would be surprised to know: I doubt myself and question my limits every day.  Everyone tells me (close friends and web acquaintances alike) that they can't understand how I do so much and I seem to have such energy – well, I don't say that as if it's some great power of mine.  It's my deep seeded fear of what I won't be able to do tomorrow so I have to do it today.  At least it cured my adolescent procrastination…

15. The hardest thing to accept about my new reality has been: the roadblock it creates to forming friendships the traditional ways – though it has been the reason I learned just how great online networks can be for building real relationships!

16. Something I never thought I could do with my illness that I did was: my job.  I'm an auditor, which means 40 hours per slow week, and 60+ hours per busy-season week.  Every day I do tasks that don't require a second thought for other people but are a challenge for me, from traveling to carrying files around all day.

17. The commercials about my illness: don't exist.  Well, there's a few about Fibro (which rely on sparkly images to indicate nerve involvement) and osteoarthritis (which show hunched over women who straighten up when taking new medicine).  I've never once seen a commercial for Sjogren's, Scleroderma, Raynaud's, or Dysautonomia.  Oh my.

18. Something I really miss doing since I was diagnosed is: walking in the rain.  I actually don't like storms, but if I had to get caught in a basic downpour or drizzle it was no big deal and could be kind of fun.  Now I go to great lengths to avoid getting wet in the rain, and even so have to combat the joint problems rain brings.

19. It was really hard to have to give up: color guard and singing.  In high school, I was a strong member of a competing color guard and had to skip the year I was diagnosed.  While I finished out the last two years in high school, it was by the skin of my teeth and I couldn't continue in college.  Singing, which had always been one of my favorite things in life, lasted a year into my college experience, but after that I began to find my Sjogren's dryness has damaged my vocal chords/throat just enough to make formally singing in a group impossible.

20. A new hobby I have taken up since my diagnosis is: blogging?  Is that a hobby?  I was diagnosed very young so it's hard to say, because I think I would have gone through many interests in the past 9 years anyway.

21. If I could have one day of feeling normal again I would: I don't know what that feels like.  I had joint, eye, and mouth symptoms going back into my early childhood among other problems.  However, if I could have a time of physical abilities back, I would spin a color guard show one more time.

22. My illness has taught me: to gear my life toward others and be proactive.  If I go through something bad, I make myself ask "how could people who will face this next be helped, and what do I need to do to make that happen".

23. Want to know a secret? One thing people say that gets under my skin is: "well at least you don't have ____".  I've said it before and I'll say it again – if you total your car in a horrendous crash and break both your legs, yes, it's true it could be worse because at least you're alive – but you still have two broken legs!  Why do people think just because it could be worse it isn't bad at all?!

24. But I love it when people: ASK ME QUESTIONS (for information, not to 'prove me wrong').  I love when people ask me what my conditions are, how they affect me, how a specific situation might impact me, what I do about problems, how I want them to help me, etc.

25. My favorite motto, scripture, quote that gets me through tough times is: I have to be honest, I have different ones for different situations.  I have a ring that says "Live His Word" to remind me to have good motives.  I have a bracelet that says "The greatest thing we can do for our Heavenly Father is to love His children" which reminds me to turn the other cheek.  The quote by Shelby in Steel Magnolias sums up my fears about my life "I need your support.  I'd rather have 30 minutes of wonderful than a lifetime of nothing special".  And, the Robert Ingersoll quote, "it is a blessed thing that in every age someone has had enough individuality and courage to stand by his own convictions," keeps me from getting jaded.

26. When someone is diagnosed I'd like to tell them: do your research, and hold to your priorities.  While you can't put your head in the sand, you don't have to give up everything that makes you happy either – if spinning color guard or going to the shore or hiking mountains is what makes you happy, gear your health plan toward that goal instead of telling yourself it's gone forever.

27. Something that has surprised me about living with an illness is: the self-respect it helps teach me.  Yes, I often feel bad about myself, hate my body, or feel guilty for how I impact those around me…but I've learned that it doesn't mean I have to put up with cruelty, being marginalized, or being used.  I have so much to do and so little time and resources in which to do it, I don't have time to be bullied.

28. The nicest thing someone did for me when I wasn't feeling well was: my family does wonderful things all the time, but my favorite "little thing" is this: my best friend always asks me where I hurt today before she hugs me.  It could be months since we've seen each other, she could be in the middle of a crisis, and everyone around us can be acting crazy, but she doesn't lay a finger on me until she knows how to hug me without hurting me. 

29. I'm involved with Invisible Illness Week because: it takes the issues I work with every day (personally and for UII) and builds them into a frenzy on the national stage!

30. The fact that you read this list makes me feel: Visible.



Are you blogging for Invisible Illness Week? Be sure to sign up and let us know at Bloggers Unite!

July 14, 2010

Some New Options

Hi Everyone!

Please forgive me, I've been quite remiss by not posting lately.  I'll spare you the detailed excuse but suffice it to say it includes a flare and continuing exhaustion, along with moodiness, summer activities, and emotional fizzle.  But, naturally, God wasn't going to let me off the hook that easily.  It's my job to pound away, and I think a few signs were sent my way to remind me.

I'll be back (yes, I promise, though I honestly don't know if it'll be soon...) with updates on some exciting things like the very cool project I'm working on with my firm and Light the Night (this one's pretty darn good if I do say so myself - if I can get off my duff and do some leg work of course), and my new ideas for UII itself.

However, in the meantime, I have a GEM for you.  My loudest wake-up call was a bit ironic, I think.  At the request of a "sickie" friend on Facebook (i.e., someone who I don't know in real life but have connected with through the groups for those of us with illnesses), I filled out a little online survey about being a Sjoggie.  I didn't think much of it, and besides it's not so hard to get me to throw in my two cents (I told my mom I think I walk around with a couple pennies in each pocket just in case an opportunity comes along).  Anyway, a little bit later I got a call from the organization who did the survery.  Apparently I'm good for something - based on my answers and some further discussion we had on the phone, they felt I'd be a good participant for an upcoming (via phone + internet) focus group, which is mostly about Sjogren's but also aimed at "Health Activists" (waddaya know, I'm an Activist Leader now).  As part of this project, they asked me to join a new online community "WEGO Health".  I figured why not, plus if I didn't like it I'd just cancel after the focus group.  It's actually pretty cool - it feels a good bit like a toned-down version of Facebook (yes, in a good way), and it's the first time I've been around quite so many people passionate about health topics the way the few of us are around here.  I've only joined one group so far (for Autoimmune Diseases) and participated in a couple discussions, but I think it's pretty cool.  It's also right in line for UII, because it's focused on bringing together health activists to magnify our impact and fascilate knowledge-sharing!

Anyway, on this network you can put up blog posts.  A woman, Amy K, put up a post which references several other posts (see, sharing) and discusses some of the emotional and social roadblocks to dealing with invisible illnesses, particularly regarding getting a diagnosis.  I know this is a topic familiar to all of us, but I think this is worth looking at.  Something interesting I've noticed (from the post but also from comments on it) is that in commiserating (which we sometimes do too much), people have also been identifying tips and tricks that many of us should try in our own doctor visits.  Amy also asked us to share the post, to really spread information.  I asked her permission to link it here, and she said of course - on the condition that I link back to the WEGO Health discussion where it exists.  Who could say no to that!  So, here is a link to this useful post on a really cool health-centric networking site, for your consideration: "An Opportunity for Kindness".  Bon apetite!

P.S. - if any of you Sjoggies out there might be open to taking the survey and possibly doing the focus group with me, please let me know ASAP so I can give you information!  The more participants there are the better the results!!

June 18, 2010

Well, it's better than Whistling Dixie!

Oh what a beautiful morning,
Oh what a beautiful day!
I have a wonderful feeling
Everything's going my way!!

Some days just lift us up, don't they?

For me, this morning started fine - I wasn't too exhausted or in the bad pain from my meds (I'm keeping a daily log of my experience on prednisone in case anyone wants to read it later).  I actually slept a bit last night.  The weather is good, and while my bus was early, I was there in time to catch it.  As a perk in the summer, my firm let's us wear jeans and leave a few hours early on Fridays (if we're in the main office and not on a client site, that is), and it's my last day unassigned for a couple of weeks.  I had putzed my way through most of my random tasks between yesterday and first thing this morning, and was actually reaching the point of near-boredom (I say near because I don't want to look a gift horse in the mouth - if God felt I should have a slow day at work, who am I to question Him).  Ah, but not for long:)

Remember my previous one or two posts about networking for UII?  Yeah I had another one of those days.  It just fell in my lap this time, I swear!  Fits right in with my word of the week though, 'Providence'.  Providence has just been that random word that pops into my head a good dozen times or more over the span of a few days, which I guess is my subconscious' way of saying "hey stupid, these things are RELATED, they have a PURPOSE".  But anyway, before I get too side tracked....

So here I was, purging old emails, and I found one that reminded me to RSVP for a local event.  I'm sure most of you are familiar with Light the Night, which is the Leukemia and Lymphoma Society's "signature fundraising walk event".  Well, my step-father-in-law has just reached a stage of full remission from his battle with Lymphoma, and has been involved with LtN for a few years at least.  Having wised up to the significance of walking with someone since my experience at the SSF Walkabout, my husband and I were quick to sign on when he asked us to join his team this year.  In our area, the society holds a kickoff event at a Phillies game, and to qualify to attend you have to sign up, raise at least $50, and RSVP by July 1.  My email reminder was to actually make the donations to our respective accounts and RSVP so we could be there, so I did.  Then, I sent a quick email to the RSVP contact person to ensure our slots are reserved.  Of course, for some reason, I did all this from my corporate email address...never underestimate the importance of an email signature!

Within minutes, I had a reply confirming our spots - and asking about my firm.  It seems a member of our firm leadership was at a LtN event not long ago, and discussions began about developing a stronger relationship between my firm and the society.  (As background, LtN is one of the many causes my firm has supported in the past, usually by having a corporate team of walkers.)  The woman emailing me asked if I were interested in taking on a lead role or knew of someone else interested in the part.  Now as you know, my instinct is to say "I'LL DO IT", but thankfully with age is coming a little bit of self-control, and I was able to realize that might be stretching myself a bit too thin.  Oh but don't think I've stepped out of the picture...that's just not my style ;)

Anyway, I guess I'd better pick up the pace on this story.  While doing a few back-and-forth messages with LtN, I also identified the firm's team leader from last year, and have confirmed with him that he is interested in taking this role again.  The LtN correspondence, which had by now picked up an additional contact person, developed into the idea of having an on-site event at my office.  While I'm only now in the stage of discussing it all with the team leader, I'm super psyched because our Disability Network has a few initiatives that fit perfectly with this idea.  First, we are trying to reach a point where our network is involved with all relevant events supported by the firm (that's an obvious one).  Second, we have been discussing how to line up a few in-office events, sometimes focused on a specific issue, which can used to build our network (reach more employees, develop our 'brand', establish ourselves in the office's culture, improve the support we can offer employees, yada yada yada).  The event initially suggested by LtN could easily grow into a solid DN event!  Furthermore, we are currently working on a small event related to Special Olympics (that's a WHOLE other ball of wax, by the way, I might do a separate post about it because if I add that into this one we'll be here all day), and if we can move quickly enough it would be absolutely ideal to dovetail, and begin promoting a LtN event on the day of our SpO event!  Why do the work twice, come on!  So that's where I see myself staying involved, trying to get that event in place.

But wait, there's more!  (My mom says I sound like a bad TV infomercial.)  As it turns out, those emails with LtN were revealing to me personally.  I guess in verifying that the donations had been made to mine and my husband's fundraising pages, the woman realized we were connected to Mark, my husband's step-father.  What I hadn't realized is that Mark is apparently more involved than the average Joe.  In addition to his team, which last year raised an impressive amount with hopes for more this year (see the widget at the top left of my blog for more information), he is serving on the Executive Committee for LtN!  I originally blamed my husband for not telling me, but I think it's more because Mark is just one of those very quiet people who doesn't say much about himself.  Anyway, this is exciting because a) apparently a lot of these people from LtN know him because of his role, and it's always nice to be affiliated with a leader, and b) as you know, there was talk about me being involved on next year's SSF Walkabout committee, and now I have someone's brain to pick!

The grand summary, as I see it?  If I can get involved with (and buddy up the people who run) some great not-for-profit projects, I'll be laying good ground for my own UII aspirations.  Further, if you consider the two causes, they compliment each other quite well: LtN is a large, well-known project, from which I can pick up great existing knowledge; the SSF Walkabout is a small-but-growing cause close to my own heart, with which I can gain hands-on experience.  Oh yes, I see this as a very good combination.  Lastly, these opportunities hold potential (which I plan to use for all they're worth) for me to establish myself in a better way within my firm's Disability Network - allowing me to build an even better work environment for myself now, a great reputation for myself as adding value to the firm, AND even more relevant experience I can use to make UII the program I want it to be!  Can anyone say 501(c)(3)?

I think, my friends, my time for preparing is winding down.  I'd give myself the next year, to live out some of these steps, but then I think it might be time to consider formally launching UII.  Organizations have risen much faster and from people who put far less time and effort into learning, and more into just ploughing.  I think the time will have passed to "talk of many things", and the time will have come to just get it done.  Of course, I'll take as many helping hands as I can get, particularly those with perhaps a legal knowledge of the process...?  Hahaha:D

Oh yes, it's a beautiful day.  Usually when I'm happy, I quite literally walk around whistling "Dixie" (don't ask me why, I haven't a clue), so maybe the "Oklahoma" cliche isn't so bad after all:)

P.S. - I've realized where I got this song stuck in my head. Congratulations, Blogger Mama, your post here won the game of who can get a song stuck in Jen's head without her knowing it (that's a real game in my family)!