May 27, 2010

No Regrets, on Your Terms

"Have you ever done something you regret?"  I hate that question, because it's just plain stupid.  Anyone who's ever blurted out something not-too-bright and had that instant grimace 'regrets' something they've done.  I'm only in my 20's, but pull out a picture of me 10 years ago and I'm probably going to cringe about something I wore (and those who have pictures from the early 80's have a lot more to 'regret' than me).  And we won't even get into middle school crushes, comedic trips-and-falls, or the various ways pants (or skirts) can inspire more regret than a diet-busting ChocolateFest.  Yeah, I'm pretty sure we all have regrets.  (However, I'm rarely willing to share them with the anonymous and indefinite public who may read my answer to this question, usually found in online surveys.)

But ask me "have you made decisions - real ones, of substance - that you regret", or if I think that when I'm someday on my death bed I'll wish I had lived my life differently.  Go on, ask.  I dare you!

You don't have to ask me; I'll tell you whether you want to know or not:)  My answer is "no".  My life and the decisions I've made so far about it are far from perfect.  I've made many mistakes, and continue to do daily (I have no illusions of perfection).  But by 'mistake', I simply mean what I've done was not the best or most productive option that existed, and sometimes caused a problem or inconvenience for myself or someone else.  However, I don't do just about anything without a reason or purpose (some people would say I over-think everything - I say logic is our most valuable tool; tomayto - tomahto).  Therefore, I feel everything I've done and all the consequences thereof have a purpose.  Did you notice that - the word "purpose" describes both the motive for and effects of my actions?  More than coincidence, if you ask me....

But anyway.  Many choices I've made were just plain good ones - marrying Shawn, going to Villanova, all the things I do to try and control my conditions, etc.  Some were fruitful, even if not ideal - taking the 5th year to finish my degree and "going public" with my medical issues come to mind. 

Then there's the third category.  These are decisions I've made which, if viewed from certain perspectives, look pretty bad.  Examples would be things such as staying in color guard for my last 2 years of high school, or any time I push my body past a safe point to achieve some other goal.  I know that each and every time I do this, I am risking more than next-day soreness.  Anytime I wake up aching, stiff, and fatigued because I just HAD to go to that concert or participate in that pick-up game, the aches/stiffness/fatigue are only the most immediate results.  They indicate a type of damage which has long-term implications on the speed at which my conditions may progress, as well as the severity they may reach (and no, I'm not being dramatic).  But what would be the point in making my body last as long as possible, if I didn't do anything in that time?  Yes, I have many things I still want to do that require physically holding up - having kids for instance - but it's a balancing act, not a one-ring show. 

Many of you have probably seen the movie "Steel Magnolias" (which, incidentally, is fantastic and I encourage everyone to watch it).  No spoilers here or anything, but basically it's the story of Shelby, a young woman who has grown up with Type 1 Diabetes (whadda ya know - an INVISIBLE ILLNESS).  At a critical point in the movie (again, don't worry I won't spoil anything), Shelby's talking to her mom about a decision she's made in her life with which her mother disagrees, because of the potential health risks involved.  As she tries to defend her decision, Shelby finally blurts out "please Momma, I need your support!  I'd rather have 30 minutes of Wonderful than a lifetime of Nothing Special."

Every time I see this scene (and that's at LEAST 30 times so far), it resonates with me.  Yes, I have goals and desires and even obligations to other people that mean I am responsible for making good choices regarding my health, but only to the extent that those choices ENHANCE my life (or someone else's).  I want my Wonderful.  And just like Shelby, I'm going to get it, even though it means making some tough choices and taking a few risks.  My path is based on my own priorities and values, which are going to be different for each of us in various life stages and situations.  My decisions would be very wrong for many of you, and some of your choices wouldn't ring true for me. 

So no, I don't regret my decisions in life, even if they had a cost.  Some of them were necessary if only for what they taught me for future decisions (I'm a big believer in the idea that everything's a learning opportunity - if you apply that knowledge later).  Some of them, horrible as they seemed at the time, opened doors I couldn't possibly have imagined; that I would have missed if I'd played it a bit safer.  And honestly, that in itself is what gives me hope - if I've had this many wonderful outcomes in my brief 24 years, there must be more around the corner!  Why do I look for something good to come when I hear bad news?  How do I keep from giving up when I get slammed (and don't be mislead, I've had very real bouts of Depression)?  Because it happened before, many times.  I've gotten miracle after miracle, gift after gift.  I've gotten them, as far as I can tell, because I keep looking for them.  God helps those who help themselves, which I believe to be absolute truth because when I've seen someone wait for their miracle they rarely got it, but every time I've worked for mine it came through.  I know my light's at the end of the tunnel, so I have no problem digging the tunnel myself with every choice I make.  I have no regrets - on my terms.

So I ask you, do you have any regrets?  Or do you empower yourself, to know when you need to play it safe and when there's something more important to your happiness?  Please, live your life so you have no regrets - on your terms.

May 22, 2010

Recess Lessons - Better Late Than Never!

Wanna know what I did yesterday?  Ok yes, I worked during the day.  In an office building.  Auditing a local government.  I thought it was a blast but will concede, not most people's idea of fun.  (By the way, we went out for lunch on the company's dime and left at least half an hour early...rethinking how bad it could be yet?)

Our two best friends (who are dating - WEIRD - they were our Maid of Honor and Best Man and our closest friends for YEARS) met us for dinner at the best diner in town.  From there, we went on a special trip to the BEST ICE CREAM PARLOR I'VE EVER ENCOUNTERED.  It's called Handel's.  I believe there are a few locations, see if there's one near you!  I actually don't usually like ice cream, I see it as an excuse for toppings in a sundae.  However, this place is phenomenal.  I can't possibly describe just how perfect the ice cream is, and they have a rotating menu which hosted about, oh, three dozen or so options yesterday!  The flavor of the month was Blueberry Cobbler...oh my Lord.  Vanilla ice cream base, with pieces of "crust" and gooey goopy lip-smacking blueberry pie filling.  I finished the entire coneful (again, weird for me)...all forty bajillion calories and three hundred grams of fat I'm sure it included.  And I. Enjoyed. Every. Sugary. Drop.  Take that, broken-diet-guilt!

In case you haven't noticed, what I'm getting at is that I indulged in some little things that make life special.  However, you know there has to be something II related if I'm blogging about it, right?  Here ya go:)

Everyone was so stuffed from dinner that we didn't have room right away for the ice cream.  So how did we kill the time?  We randomly decided to wander around the area on foot.  Yes, I walked around the area.  We eventually made a pit stop at a drug store (I needed arch supports for my new sneakers - I'm trying to remove excuses to not exercise one pain at a time), where our buddy bought a Wiffle Ball + Bat.  Yeah, this only gets more mature from here...

After devouring the Best Ice Cream on Earth, we journeyed back to our hometown, to the firehouse our friend runs with for a game of Wiffle Ball.  My friend and I thought we were going to be watching the group of goofball boys run around like monkeys after this silly plastic ball.  However, they were a little short staffed for the game, and we found ourselves on the apron the firehouse fielding hits before they could roll into the street.  I was already shocked to find myself in a game where I had to run, when I found out I also had to pitch and bat!  Are you KIDDING?  I don't "play ball"!  I don't run, I don't throw, and I don't swing.  I can catch, but chasing down the ball at top speed so it doesn't get crushed by a car - not so much.  That's what I have a husband for, right?  And then the broken-diet-guilt made an appearance "hey, Jen Lardbutt!  You did just eat more calories and fat than you should consume in a week.  This would be a way to work off at least a few of those calories.  But if you think you can afford to sit around and watch instead...".  Whew, that was close.  I almost succumbed to the urge to exercise!  Fortunately, my resistance was strong...until Self Doubt made his appearance.  "Yo, Jen!  Haven't you had enough of being a Sickie lately?  Do you really want to tell another whole group of people you can't do something?  Way to be whiny, babe."

I can't stand up to Self Doubt.  He gets me into a lot of trouble.  Putting in too many hours in busy season, going to an all-day concern in the sun, standing outside for two hours teaching my cousin to spin a flag - all his doing.  Maybe he has stock in ibuprofen and is just trying to boost sales, because goodness knows I go through plenty the day after each of these undertakings!

Anyway, the long and short of it is I played.  Did I ever mention that I never learned to play Wiffle Ball?  Yeah, I didn't spend much time as a kid with a bat in my hand.  I can catch, but made a fool out of myself the first time I had to be pitcher!  I wanted the ground to swallow me whole, it was so embarassing.  5 year old kids play this game, and I can't get a stupid little white plastic ball to go where I want it.  However, my best friend was a softball pitcher in a past life, and took pity on me.  She taught me to pitch enough to get through the game (granted, I look like a moron because I have to point at my target first, but it's better than throwing it a good 15 degrees off my target every pitch).  So I got through that crisis...only to find out I was next up to bat!  I turned to my husband (playing catcher at the moment), and said "so, would this be a bad time to point out I never learned to bat, either?".  My secret was out, I was a wiffle ball outcast as a kid, might as well go Full Monty on my shortcomings.  After a bit of a chuckle (I'll remember that, guys...), Shawn thought to tell me to line myself up like my favorite ballplayer, Ryan Howard (I'm a Phillies Phan, don't be hatin').  Wouldn't you know, the damned joke worked!  I should have realized if power-hitter Ryan developed such a distinctive system for getting ready to bat, it must have a reason.  I might not have knocked it out of the 'park', but I got a few good hits that made everyone hustle! 

After the game, I realized another little perk in my night.  These guys, who included my best friends but also some mere acquaintences, saw my shortcomings and instead of mocking me (which is the entire reason I never learned to throw or hit during all my years of gym classes in school) they taught me how to do it.  They restored my faith in humanity;)  And the crowning glory of it all?  I'm still functioning today.  I can walk, I can bend.  I'm a little achy, but have been for weeks now.  I feel so much better about life right now:)  Maybe I'll be ok:D

Holy Gadzooks, I finally caught up to the skill set of a 7 year-old during recess!  Now if only I could learn my times tables....

May 20, 2010


Oh boy oh boy oh boy!

There was an article on my company's internal 'news page' recently about a woman, an employee, with Juvenile Rheumatoid Arthritis.  At the end of the article, it listed a contact if you were interested in sharing your story.  Naturally, I had to follow up.

In my email, I mentioned that I had been working with someone else on a similar project but wasn't sure if I had dropped off the radar (the last I heard about an interview was 6 weeks ago and those lovely pictures were taking about a month ago).  Turns out this is all part of the same project, so I'm glad I reminded them of my interest.  (For the record, I'd be ok waiting however long it took, if I had an idea it would take that long.  I was told I'd be contacted, but not when, so at 6 weeks it seemed reasonable to think I'd been forgotten.)

So, in response, I received an email today from the original woman involved.  She explained that it's the same effort, and reaffirmed that they would still like to profile my story at some point.  She also asked if I have any information she might want to include in a national online training session about disabilities...and you bet your little booty that UII will be somewhere in that list I give her ^-^.  But I digress...

Also in this email, she sent me the proof for the new brochure!!!  In the interests of proprietary information, I am only posting the first page of the brochure, and have made some edits.  I removed anytime the company's name appears and replaced it with "Co" (so if it doesn't make sense, that's why).  Also, when I couldn't remove a few items, I blocked with text boxes, again to remove the company's name and also the names of two people who 'signed' the brochure.  Someday I may be able to post it outright, or some of you may recognize enough of the branding style to know the company (I didn't want to remove it all, so you could see the effect of the brochure).  By the way, if you do figure out the company, please don't mention it by name, I don't have explicit permission to use their name right now and it's just easier to avoid the whole issue.

BUT ANYWAY, here it is!

AND... this is what they said on the inside page (which I didn't include because it said the company name like a million times and I didn't have the patience to remove them all):

On the Cover:
Jennifer Pettit is a Co. Audit professional.  She also is a person with disabilities.
Co's Disability Network is committed to providing guidance on, and raising awareness of, workplace issues that can affect our partners and employees who, like Jennifer, have a disability themselves, or have a family member with a special need.

Holy gadzooks!  Whaddayaknow, I'm a professional with disabilities!  And look way better in this picture than I had feared:)  Not to pull out ALL the bad 80's sayings, but too cool for school!

I'm just gonna sit back and enjoy this one for a moment, and wait for the paparazzi xD.

May 14, 2010

Mortality Sucks

In the past few months, I've received a number of comments on blog posts, Facebook statuses, and the like, along these lines:  "Wow, you do a lot! I don't know how you have the energy to keep up with everything!"
And the truly well-intentioned add:  "You need to be careful / slow down / take it easy before you burn out! You know your body can't handle that."

Not to sound ungrateful, but I think all you women out there who've taken such a 'knowing Sjogie who's been there, done that' tone have jinxed me. Thanks a lot!

But in all seriousness, I know what you were trying to tell me, and it's nothing I wouldn't tell someone else. You're right, as I'm sure you've known the whole time. I should have listened; my very logical, cognitively functioning side knew even the best medical plateau couldn't last forever. Unfortunately my stubborn, over-achieving, head-in-the-clouds side is WAY stronger. It's a shame my body doesn't have the strength to match my foolish will.

I guess I'm depressed. All these stories about women who have had to cut back hours, change to a less intense job to pay the bills, or stop working altogether have been distant in some ways. Yes, of course they're real and legitimate, that was never a question. And these stories are just the kind of facts I try to share as part of Invisible Illness Awareness efforts. But they were sad fates experienced by other "sicker" people, and usually those a few decades my senior, too. Generally people who had already had their shots in their chosen industry, and who must now cope with the premature end to those plans. Other than fellow blogger Jazzcat, I really don't know someone in a similar position in their life, where the realities of our conditions just can't supersede other parts of our lives, no matter how much they "should".

I'm not even a full year into my career. And, I got a late start to begin with (another gift of autoimmune diseases - a 5th year of college loans to compensate for the years where I couldn't carry 5-course semesters - means that I'm older than many of my superiors at work). I figured in 10 years' time I'd have to face these issues, and that within 5 years I should start planning for them if I were smart, but I didn't expect them to slap me in the face so fast. Even my doctor was looking forward to this stage in my life because she understood I wasn't going to slow down in college, but now she delivered her evaluation that I've backslid.
It's very true, I can see and feel that my body isn't as stable as it had been for years. Gone are my days of even having the option to push myself past a safe point knowing that I had a reserve and would be fine. Instead, I'm slowly but steadily drifting back toward the days of impairing stiffness, 2-3+ doses of Ibuprofen, and intrusive fatigue. I'm just barely getting through each day at work, and these aren't even long days or high-pressure assignments. I thought if I took it easy after busy season I'd be back to normal soon, but it's now 7 weeks later and I'm even worse!

I'm so depressed. I'm too drained mentally and physically to work on my pet projects (UII and my youth group). Any cleaning projects around my house are a pipe dream, and my attempts to go through old clothes to get rid of have become a game of musical chairs (the clothes get sorted into piles on my bed only to return to a jumbled heap on the floor when I need to collapse). I'm getting more forgetful again, and seem moody because I easily tear up in frustration and from feeling overwhelmed. And please, don't ask me to make a decision, I simply couldn't handle that now....

Wasn't I the one touting the return of stability on an investment in abiding by personal limits? Didn't I have things so under control that I could almost pretend remission? I know I'm being hypocritical - I always tell others to keep pushing until they find the right doctors and maintenance plan - but I just can't stand the idea of needing to redo my own plan. I don't want to go to the opthamologist next week (I will, but I don't want to), and I've been putting off the dentist for months, even though I know that means I'll have that much more damage to catch back up on when I finally go. I'm on enough meds as it is, and unless they come through with Julia's miracle cure-all, I don't relish the idea of playing with any more.

I don't like this place. I'm angry and resentful of having to return. I wanted to close this door and pretend I would never have to come back. I'm scared of the future (including that which is much closer than I anticipated), and angry about the present. I know I promised to keep this blog upbeat, but sometimes even I can't put on my hope mask for a while. I know you've been there before, too, but I still hate it.

May 2, 2010

UII and SSF: Success!

I'd like to report that Team "UII" Can Spread Hope! made a great showing at the 6th Annual SSF Philadelphia Walkabout!  Eight of the ten original walkers (we lost one to an inflexible work schedule and one to a foot injury) braved the near-100 degree heat index to support Sjogies everywhere:D  Here's my favorite picture of our team:

Team "UII" Can Spread Hope! 2010

My dad and brother, in-laws, and best friends came out, and even wore my silly t-shirts.

Shirt Front

Shirt Back

Though, my shirts were not without a purpose;)  Besides the obvious, I wanted bright team shirts that had a clear message - one people would ask about (and I'm not above directing people to Ask Me About UII, hahaha).  And it worked.  I spoke to at least 3 or 4 people about it, not counting anyone my friends and family spoke to.  One of them was a committee member for the Walkabout...and asked me to be on the committee next year *victorious grin*.  We tried to move as a unit, which kept the Foundation photographers buzzing around.  They sent me four of the pictures they took, which I posted on Facebook along with my own pictures.  Here's a link where you can see them all (you don't have to be on Facebook to follow this link): Jenny's SSF Walkabout Pictures.  I was able to hand out a couple of business cards.  Yes, a successful day indeed:)

But of course, promoting UII is not my only goal, and I also call the day a success because it apparently had a record turnout and fundraising total.  While I couldn't hold out for the closing ceremonies (I tried, I really did, but the walk step-off was quite late, the sun was quite harsh, and this little Sjogie had quite enough for her dried out body for one day), and therefore don't know the exact numbers, I know it surpassed the past 5 years and probably all expectations.  My own thank you to not only those who donated, but also who tried to help me spread the word about my team and the Walkabout; you're certainly part of this success.

I got to meet my new Facebook friend Katharine, who told me about the Walkabout in the first place.  It was really good to talk to her (and her shirt was awesone - "Sjogren's Sucks"), and I'm excited to hang out again with her and other people we've met who are in the area (feel free to join us). 

My dad, who could not actually take part in the walk itself, spent the time chatting up the head of the Foundation, discussing UII and other topics (it's pretty obvious where I get it from, the promo apple doesn't fall far from the networking tree).  Hopefully that'll turn into some attention for our group:)  Remember, UII isn't just about Sjogren's, or even autoimmune diseases.  It's about all Invisible Illnesses - autoimmune or neurological conditions, cancers, arthritic illnesses, blood disorders, mental/emotional conditions, chronic or accute problems...the list just goes on and on.  What we all have in common is that someone looking at us can't see the crosses we bear.  We don't "look sick", and therefore find ourselves discounted by many people.  Furthermore, many II's are difficult to diagnose (as we know) and are often poorly understood even by medical science.  We need each other - which is why I call this support and awareness effort "UII".  So we remembered we're not alone.  UII brings us together to support each other and share stories; to see other people make it and know we can too; to discuss specific symptoms and benefit from combined knowledge as we help each other sort through the haze.  It's amazing what difference it makes when you know you're one of millions.  (By the way, I also won a SSF windbreaker for knowing that approximately 4 million Americans are believed to have Sjogren's... think about that statistic.)

The first thing I noticed when I got to the walk was how many cars were already there.  I arrived probably near the middle of the crowd, and we were already parking on the grass past the whole parking lot that had already filled up.  When I registered and started to look around the exhibits, tables, and tents, I was struck.  I realized I was surrounded by more Sjogie's than I've probably ever met before!  I actually got excited, thinking about how many people there were like me!  I wanted to talk to everyone, to find out what we had all been through or what I should be aware of for my future or how people dealt with things I'm dealing with... whew!  I need to sit down!  And on the heels of that thought, this one - I wasn't sure exactly who else there was a Sjogie.  So many of us had brought non-Sjogie supporters.  I mean, in my own group I was outnumbered 7 to 1!  There may have been like five of us for all I know:)  Afterall, just because I have invisible illnesses doesn't mean I have a special power to see them in others:D

And finally, to share how the day affected me physically.  I had tried to prepare for the past week or so by trying to keep hydrated and avoiding coffee (for some reason, only the caffeine in coffee bothers me - chocolate, soda, and tea don't 'cause me any problems but coffee can set me up for a flare if another trigger comes along).  I remembered a water bottle and sunscreen, and of course my sunglasses.  I also took three kinds of eye drops, and ace bandage, and a snack bar (my blood sugar had gotten messed up at the end of the week).  I also took my Provigil to stay awake.  I forgot my ibuprofen (stupid), but my best friend remembered hers (that's what friends are for).  My plan worked, and I was able to do the walk.  I had a bit of back pain from standing so much during the activities before the walk itself, but my friends made me sit down for a bit and took my backpack, and then everything was ok.  I handled the walk well, and tried to hang out under the tents to minimize the risks of sun exposure.  After the walk (and a shower), my friends and I got lunch, then spent the rest of the day sitting around like third base (actually, there were four of us so I guess we were a whole diamond).  We definitely needed the rest.  I've been stiff since yesterday afternoon, which isn't really relieved by much.  I'll let my joints rest until tomorrow, then I'll start trying to stretch them out and work on my range of motion.  By then they should be healed enough to handle the motion.  I'm trying to keep hydrating and avoiding coffee for at least a day or two (if I can hold out - I've been craving Starbucks for 2 weeks).  At that point, I think I'll be ok, though right now my knees still have this feeling like being sunburned but from the inside.  Ah, fibroid and connective tissue can be such fun. 

My concluding evaluation of the entire project?  A successful venture, a good day, and a LOT of things to do for next year.  Ah, I like this feeling:)