April 30, 2010

Getting Anxious...

*Deep breath*.  I don't relax well, sorry.  Actually, the word "relax" usually makes me extremely agitated and angry...but that's another story for another day.

So the Sjogren's Walk is tomorrow!  I'm excited, definitely.  Let's count a blessing here: I designed t-shirts my dad's helping me make (iron on transfers are one of my favorite tools), and when Shawn and I went to buy the shirts (5 for $10 sales are another of my favorite things) we started counting up who we need them for.  I was getting bummed that the only people who had committed so far to the walk were family and a couple friends, but we ended up needing 10 shirts just for us!  It's hard to feel bad about 10 people, even if they are people who already had some clue about the condition.  (Though, much to my surprise, I found out some had no idea....)

Ok so we counted a blessing...how about remaining hopeful and optimistic.  I still think there's a chance some of my coworkers and people from my church might turn up.  No one has actually told me they're definitely coming, but a number of people did say they'd see.  A number of people - some who I talk to a lot and some I've hardly had contact with in years - have told me they can't make it but took an interest in the whole project; some even tried to pass the information on to their friends.  So, there's a lot of people floating around out there who might still emerge at the last minute.

One more 'positive' comes to mind.  As I just mentioned, some people have taken notice who I hardly have any contact with (so they have little reason to care about my life).  Also, some surprising people have pitched in the effort - a girl I haven't seen since my freshman year of high school (well, I guess that makes her a woman now but I'm having issues with my age so we'll go with girl) apologized that she couldn't make it (I'm touched she even paid attention) and reposted my link for her friends.  A man my father knows through an organization saw that my dad reposted the link, went and made a donation through the site, and reposted for his friends to see!  A certain inspirational fellow blogger who shall remain nameless even put in her two cents - and a few bucks, too:)  It's these people, these people who make me fall in love with people again:)

Ok I was positive three times now.  I'm clearly not looking for problems or being ungrateful, right?  Good.  So now that we've covered that, I really do need to at least acknowledge my more negative feelings.  First, I'm a bit disappointed in my Facebook 'friends' who couldn't be bothered to so much as click "share" for the link.  Now, lest you think I'm unreasonable, I did not expect everyone to do it, not even most.  Maybe 10 or so, out of 200.  There's a few people who are always reposting things like this for other friends, or even just things they saw that they felt moved to support.  'Sharing' a link doesn't even replace your current status, so whatever you may have felt so important to tell the world will still be told!  I realize many people have more important things in their lives to think about than me and the walk, but as I said I'm disappointed that at least a small handful of people (come on, that's 5% of my friends list.  5!) couldn't be bothered.  Whew.  Ok at least I feel better getting that one off my mind. 

I'm also a bit ... less-than-thrilled ... with some people from my church.  This parish suffers a ridiculous case of BO Syndrome (Better-Offer); they almost never commit to something ahead of time, lest a better offer for something to do comes up.  I'm starting to wonder if mine were the only parents who felt it important to remind me on a daily basis growing up that I have to make a decision and stand by my commitments.  Right now, there's at least 12 people I know of who are 'maybes' for the walk (from my parish).  It's tomorrow!  Really?  They couldn't throw caution to the wind here and make a decision already? 

Lastly, I'm definitely disappointed in some things with my employer.  Now, mind you, not with my employer as a whole, and not with many specific coworkers.  No, I'm frustrated with the woman who heads the activities group that backs every single similar walk/bike-ride/marathon/fundraiser/awareness project that comes through the door.  I emailed this person about the walk, and she said let's talk - great!  I stopped by her office to discuss it with her, and she took all the information, web links, and contact info, and said she thought we could have some publicity going by the beginning of the next week - fabulous!  She emailed me a few days later asking for a two-sentence blurb with specific information that she needed that day, and I got it back to her - holy gadzooks!  We're cookin'!  NOT.  Email after email came out about other events (including two the same weekend).  Ads went up around the office for a bike-a-thon and blood drive.  Reminder emails started for some of the things in the first emails.  The Sjogren's walk was nowhere to be found (nor was the Disability Network logo, which it had been agreed would be placed on all such ads).  So, I sweetly emailed her and asked if she had any updates on the walk that I could take to our network meeting...and got the reply that "it's not really a project [that her group would work on], so I'll forward the info to other people".  WHAT?!  Are you kidding?!  EVERY similar event has come through this group.  When I told this story to more experienced coworkers who've been here longer, they all said "of course it belongs with that group".  PLUS, she herself told me they'd be working on it.  Why would she tell me that then act like it never belonged to them?  This was after multiple communications about it, including one where she offered to send 'another' email (I wanted to know what the first one was because I never saw one, but I didn't want to be rude and figured one is better than none).  It actually crossed my mind that maybe she's losing hers.... 

So, I finally realized that was a dead end, and resorted to emailing anyone I was friendly with at the office with the details, and asking them to help pass the information along to others.  I also found the backdoor way to get flyers and brochures placed around the office (which I do think people have looked at).  I have no idea if anyone did pass it on, and no one has contacted me to sign up.  I'm trying to stay hopeful, like I said...but boy is it hard.

And the annoyance icing on the aggravation cake - when the weather forecast showed rain, people said they didn't want to go and get wet.  When it said cool and windy, they'd had enough of the cold and wouldn't go.  Now the forecast is sunny and hot (though we'll be shaded by trees) - and they don't want to go out in that much heat!  Just shoot me already.  I feel like giving up.

(I won't, and in 10 minutes I'll probably be back to sending more annoying reminder emails to everyone I know...but I can't help but think about it.)

Sigh.  *Second deep breath*  Well, I hope I haven't over-focused on the negatives.  In all fairness, I need to also mention that the recruiting department at work answered a plea for company logo paraphernalia with an overwhelming supply to choose from.  (I ended up taking bandannas that I've pre-rolled to tie around our heads or arms, and two backpacks - hey, a Sjogie needs her water on a walk, ok?!)  Nine friends and family - ranging from best friends to blood relatives to in-laws - are schlepping almost an hour one way on a Saturday morning to support me and bunch of over-inflamed, under-moisturized dried up little sponges:)  And they're willing to wear strange shirts sight-unseen:):)  Nearly as many friends and acquaintances have passed on their sincere best wishes though they can't be there. 

There is some goodwill, some selflessness, some kindness out there.  And who knows, I might get to the walk and be greeted by dozens of coworkers and fellow parishioners!  Friends will bring friends!  Strangers will have been touched by the flyers and feel compelled to join us!  Alright, now I sounds more like my mule-head-in-the-clouds self.  Ok, crisis averted!  No emotional meltdowns here, not now anyway.  Nothing to see, people, nothing to see - move along with your days and try to throw out a few links on the way;)

I'll try to post over the weekend with the result of the walk and some pictures.  And I promise to think good thoughts, that everything will be fantastic.  It should be a happy post.  I will now focus my energies on a positive outcome.... *Ommmmmmm....*

April 8, 2010

People Who Restore My Faith in Humanity

It sounds like a joke, and I say it all the time: "you've restored my faith in humanity". I say it when someone just plain-old treats me like a human being. You know, when someone does something small and logical, but which is usually overlooked. Like the person who says "here, wear my coat" instead of "HOW can you be cold?!", or shows up to help on a project you only mentioned in front of them.

These are people who's presence in my life has helped me keep going. They are often people I met when I was beginning to have a very Marxist view of society as inherently evil and selfish, and knowing them was to see God in others again. They have embraced ideas others balked at; actively supported causes that meant little in their own lives because of what they meant to me (and to others); have gone the extra mile to strive for the best, not just the baseline. They make the right choice even when no one is looking, and forgive me when I make the wrong one. They are passionate and patient, a combination that eludes me still. Their very existence refreshes me, and inspires me to live up to the ideals they would hold for themselves, and yet never judge me. They love me when I can't love myself.

Knowing these people is a gift in my life. They emerge at the most surprising times and places, and I find myself searching for new opportunities and challenges in the hopes I'll get to meet one more like them. None of are famous, but they all radiate hope, faith, love, and usually peace. They defy cynicism and shatter pessimism. They are everything I see missing in myself, and yet act as though I were something special - because they see something special in everyone they meet.

I wish I could share them with the whole world, so the world would see that altruism is real. How can we deny God's existence and mercy when His love is so tangible in them? They are lights under a bushel, and I'm so blessed to have been there when their cloaks were lifted to reveal how they shine.

I'm not going to enumerate them here, but their names form a list on my heart and in my prayers. They've been the family I was gifted at birth and the one I've been gifted in marriage. They're the loyal friends - the kind so many people like me long for and need desperately. They've been coworkers and classmates, students and strangers. They were chance acquaintances who turned into some of my greatest allies. They've worked at my school, in my building, and in stores I've shopped at; they're in my hometown parish and across the country. Some are loving me from heaven and some from on Earth. None will ever know how grateful I am for them, but I hope they know their love is returned.

April 5, 2010

When Our Powers Combine, We Are....Captain Advocate!

I realize this post has been a long time coming.  I appoligize for taking so long to get it finished and posted.  We've had some issues come up lately (my puppy dog fell seriously ill last week, we were out of town before that, this weekend obviously was Easter and we had family to see, and so on).  The good news is I think I'm finally ready to get this one online!

So, wow, where to start!  I wanted to fill you in on some things that have been happening (primarily with my employer but also a few other directions) which are in keeping with my awareness goals.  As you know, "UII" is short for Understanding Invisible Illnesses, and people can't understand them if they don't know they exist!  So, I see basic awareness as the first and most crucial step in gaining support for sufferers from the rest of the world, which is how we can create a more welcoming society and encourage greater productivity for sufferers who must operate on alternative system, if you will.

As I've mentioned before, my employer has a "Disabiliy Network" (we're trying to think of a new name, so if you have any suggestions let me know) which aims to support 'disabled' employees as well as those who may care for a 'disabled' child, parent, spouse, etc.  It's a wonderful concept, but a difficult one to promote and grow.  The network has only existed in my local office for two years, and has not garnered much attention or support so far.  No one's against it, by any means, but few people have expressed much interest.  I could go on and on about why these problems exist, but most of us are familiar with them in our own lives.  In short, factors include not understanding who the network is designed for nor what benefits it can offer, not being able to easily identify potential members, people who fear (or otherwise dislike) the idea of being identified as "disabled", and plain old limited time.  It actually turns out that I'm the only person from our audit division who's really tried to become involved so far (it makes sense to me, most of the audit division works from client sites and is not in the office on a regular basis when events have been held).  I also personally feel that the types of events that have been attempted in the past miss their mark a bit and would be more effective once the network itself is more established.  Since peole don't understand what the network IS yet, they aren't likely to turn out for information sessions it hosts.

So, I obviously have my own ideas and goals I'd like to try and live out within the network, and they've also clearly told me they hope I can draw in more of my peers, which I'm happy to do.  I don't have much personal clout that would get people to turn out, but I do have a good bit of related experience between UII online and my efforts in college.  So, I generated a list of ideas to promote the network, and submitted it for our latest meeting.  Interestingly, a national meeting for the network was held shortly before our local office meeting, and many of the thoughts and ideas put forth there appeared on my personal list!  (I think that will lend some credence to my other ideas, now that the group knows my ideas are in line with national movements.  It's a little tough sometimes to get manager and partners to put much faith in the ideas of a newbie, particularly when they already feel so beaten down by failed attempts.)  Ok, so now we know I'm gaining solid footing within the local network!

As part of the new ideas being put into action for both local and national disability networks within my firm, they are looking to shift a focus more toward invisible illnesses (HA!  YES!), because they finally realize that is what most of our 'disabled' employees live with.  Somewhat related to this shift, they are looking to profile a few employees (I believe, from across the country) to tell their stories.  Hopefully, this will help other employees realize how many of their peers may be affected by a 'disability', or even encourage more 'disabled' employees to step forward and participate in the network!  I totally support this idea:)  And as no surprise to you, dear readers, I was pretty quick to offer my story for the project.  I have no idea right now if I will be selected for this project, I suppose it depends in part on how many other people are willing to come forward, but I will DEFINITELY keep you posted;) 

As I may have mentioned in a previous post (I might not have, I really don't remember - at this point I have trouble remembering if I've eaten each day), I 'won' a prize at my firm's annual meeting of having lunch with one of a few key leaders in the office.  For me, the choice was easy - there is one partner who is head of the audit division, friendly with my performance manager, and involved in trying to gain new non-profit clients for the firm (which is obviously the type of engagement I'm trying to work on).  We scheduled our lunch for after the brunt of busy season, which happened to be last Monday.  It went well; it's pretty cool to be a newbie and able to talk about everything from goofy stories to the possibility of raises with someone so far up the ladder.  Never one to pass up an opportunity, I worked in a few notes on the disability network and about UII, which I'm pretty sure have been mentally filed for future reference:) 

Then the big break hit (well, relatively speaking it's a big break in my eyes)!  As I wrote in my latest post, a new friend on Facebook told me about a local walk being held by the Sjogren's Syndrome Foundation on May 1!  Once I finally got the chance to look into it more closely, I flew into action.  In what feels like no time, I had created a 'team' to walk and the associated website (seen here) and gotten two groups behind it.  My first thought was the Disability Network.  The firm regularly supports similar events, and especially those which affect our own employees.  The network had already approved the plan that every event the firm supported which could be related to a heath issue would automatically be supported by the network (naturally, with our name plastered everywhere so employees get used to seeing it).  I had been encouraging the network to focus on specific issues that someone in the group is knowledgable about as we get off the ground, and worry about expanding our scope as we grow (when I came in they were trying to make each event 'appeal to a broader audience'...which is nice in theory but results in a watered-down presentation that didn't provide much information or garner much support).  Naturally, this seemed like the PERFECT opportunity to put all these ideas into action.  I sent out the link and information to the other members of the network.  There's another group in our office which organizes all types of community outreach events, including things like these walks (bike-a-thons, runs, and so on).  So, shortly after sending out the message to our network, I decided to just go ahead and contact this other group about getting the firm behind the Sjogren's Walk.  I was THRILLED when the woman I spoke with seemed ready to act on it!  She said she might be able to have some publicity going around on it as early as this week, and I cannot wait.  I also took the opportunity to mention another idea I had had to promote the Disability Network which would have to run through their group, and she seemed receptive to that idea as well (though of course it would be revisited at another time).  I also took the added step of directly contacting some of my coworkers with whom I am most friendly.  A few have even already expressed interest in joining us!

Next, I thought about the youth group I work with at my parish.  I've read many posts from other sufferers who have either found support (or sadly, are horribly appalled by the lack of support) from their church / faith community.  To me, it's never been much of an issue - the only two times my conditions ever really affect me at church are with regards to kneeling (and 9 out of 10 times I can get around it with no one noticing I rest my backside on the pew, and the other times I deal with as they come along), and sometimes with receiving Communion.  With my dry mouth, it's hard for me to consume the host, and I prefer to also receive the wine, especially on days where I'm serving as a Eucharistic Minister and need to be able to speak to the people I distribute to - but again, it's something I can usually work around easily.  So, while my friends at the church know about my medical situation, I never made it much of an issue with the pastor or anything like that.  I also tried to keep it low-key in dealing with the youth group, because I feel that's not what our focus should be right now.  However, this walk was just too good to pass up!  Our teen program runs with the school year, so we are staring to wind down.  We had wanted to get one or two more events in, and a most of these kids love service events.  Furthermore, many of them are athletes, and a walk is right up their alley.  So, I talked to a few people at my church, including the pastor, to ensure no one feels like I'm just trying to promote my own interests, and we all agreed it was an appropriate event to offer to the group!  Naturally, I wasted no time in getting that organized and the word out to the teens:)  Now if only they show up...but that's another post:) 

Lastly, I decided to at least pass the word along to my alma mater.  As I've mentioned, I worked closely with this one office there to promote awareness, and some of our events were extremely successful.  The university as a whole prides itself on the network it maintains between current students, staff, and faculty and alumni.  So, I sent a message to my contact within that network about this walk.  We had discussed how much the health-conscious campus would respond to a walk in support of a condition, but most of the walks fell at inopportune times in the school year.  This one, on May 1st, just might have a shot at success:)  The office was closed for the holidays, so I'm still waiting for feedback on that one.

Whew!  Well, I'm exchausted!  I get a huge rush when I have the chance to get a synergetic flow going from multiple sources at once.  My employer (in multiple ways), my parish youth group, possibly my alma mater, and naturally, my very supportive friends and family all interested in this goal?  It's almost too good to be true!  Honestly, I'm not even that focused on the fundraising aspect - I mean, goodness knows I understand the importance of this funding, and hope I can round up a respectable donation for the group through my page.  But, as I said in the beginning, right now it's all about awareness.  Most people who I've spoken to about this walk, including my friends and family, hadn't known what Sjogren's is.  Some didn't even know it was the name of one of my diagnoses.  But they do now, and they're telling other people. 

I dream of big results - of acceptance and every person I meet on the street knowing what autoimmune conditions are and amply funded research and support groups every day of the week - but I know it can't start there.  It has to start with the person who says "what is that?" when I tell them about the walk.  It has to start with coworkers seeing that the firm supports me with my disabilities instead of trying to eliminate me.  It has to start with teens knowing that the people in their community face an endless array of challenges that they may face someday too, but that these people stay positive and actively work toward better lives for themselves and each other.  To me, this is truly one of the most exciting things in the world, and I am grateful beyond words to be a part of it.  Thank you all for your support, too.  Please continue to help spread awareness!