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)!

June 15, 2010


Yeah, I know, we've all heard that pun before and I'm not that creative.  Add it to the list of things I'll work on improving when my brain fog lifts, ok?  Ok.  (Now if only I could find the list I already started....)

(P.S. - I've finally completed this post but it was interrupted for at least 3 separate naps, so I apologize for any lapses in continuity this may have caused.)

That being said, I just came home from the rheumatologist's for my usual 3 month appointment.  Let's review the lead-up, shall we?
  • November appointment - clean bill of health (relatively speaking, of course); conditions had been stable for quite some time (in fact, that inspired one or two previous posts).  Got Provigil worked out (a GOD SEND, truly, no taking-in-vain here), and a shot in my left shoulder cured my problems which had been preventing me from lifting and carrying things with that arm for weeks.  Last appointment before my first busy season.
  • March appointment - this appointment actually fell during my last week on my last busy-season client.  This was the now-infamous visit where my doctor (in her best Italian mother style) told me I was "significantly worse than the last time [she] saw [me]".  Naturally, 60+ hour weeks had taken their toll... Felt confident that despite the set back, I was going to be able to use the upcoming slow period and extra vacation days to recoup without much fuss.  WRONG.
  • Time between March appointment and today's - Though my work schedule remained reasonable or even slow at times, I didn't seem to be improving.  In fact, I felt steadily worse (more stiff, more achy, more 'tender points', more exhausted, blah blah blah).  I spent last week in Florida for training (and no, it wasn't a pleasure trip because you spend the whole day in windowless meeting rooms staring at a computer, and flying isn't the best thing for my joints either).  I've been booked up pretty much every weekend.  Did get a clean bill of ocular health from the opthamologist, but had to start a nasal spray for allergies (on top of oral antihistamine - it's wonder I have any fluids left at all).  And, this weekend the shot in my shoulder wore off (ouch).
I tried to prepare for today's appointment with a list of my most persistent and/or troublesome symptoms and my husband to play back up when my memory failed (I don't know about you, but no matter how I try to prepare the doctor asks me questions I can't remember the answer to and it's very helpful to have the person who has to listen to the whining with me).  After discussing my list and concerns, she performed her physical evaluation.  Which warrants another tangent - I hate that after the exam all my tender points hurt because she had to push on them.  I'm glad she's thorough but it's a lose-lose no matter how you slice it.  But I digress. 

At the end of her evaluation, she told me she's not going to give me another shot in my shoulder, at least not now.  She feels that I'm actually having an overall full-blown flare, and therefore she'd rather have me try the 6 day prednisone pack treatment for more widespread relief.  Her hope is that it will be enough to help me get over this hump I haven't been able to get past on my own, and onto real recovery (then, if everything else improves and my shoulder's still bad she'll give me a shot at that time).

So the question naturally arises, why didn't I know I was flaring?  I have two answers.  First, this would be the only flare that I remember where I was still functioning.  I was getting up and going to work, I was on time for training each day last week, I'm sleeping a lot on my days off but I also haven't taken my Provigil those days.  In the past, a flare meant I was out of (well, school at the time), didn't get my own food, never got out of my pjs.  So, arguably, a 'functioning flare' could be better than worse - except that since I was functioning I wasn't truly resting enough to try and recover.  My second thought on the matter is a tiny bit of denial.  While it's true I probably wouldn't ultimately have called it a flare on my own because of my functionality, I also didn't WANT to call it a flare.  The word crossed my mind often enough (usually as "gee I hope I can turn this around before it becomes a flare"), but I was always pretty quick to be sure I relegated it to a future threat, not an imminent reality.  I haven't had a flare in years (at least not what I've considered to be one) and I'm not too keen to accept having one now.  And that, in turn, is fueled by the disconcerting knowledge that one flare can potentially weaken you and set you up for another.  Greaaaat.  Since I'll be starting the treatment tomorrow (I don't know if I'll have side effects and I'd like to at least start my recovery calmly), I officially took my first real sick day.  Fabulous.

I've never tried this prednisone treatment before, but I've heard it discussed quite often by my contemporaries online (along with longer steroid therapies, glad to avoid that).  For those who may be wondering, it's a taper treatment, where you take 6 pills the first day, 5 the second, 4 the third, and so on for 6 days.  It's supposed to be a moderate 'jolt' for your inflamed joints and systems.  Anyway, with this turn of events still processing this morning, I forgot to ask the usual questions "how long should I expect to wait to feel the effects" and "what side effects should I anticipate", so I tried to look some info up online this evening (after a few naps, of course).  I gave that up pretty quickly though, because I kept finding discussion boards where many people said the following:
  • It caused so many side effects they gave up after only a few days (I'm not too worried by that because I know enough about steroids to understand you don't just stop the treatment like that, but I am concerned what side effects I might be battling as I try to get back to work)
  • It caused severe cramps
  • (From those who finished the whole course of treatment) it provided moderate to full relief during treatment but wore off quickly and completely (many of these people had actually taken 3 or 4 rounds within a few months - I at least know my doctor would never have me do that)
And no one really had anything good to say.  Double greaaaaat.

So, if you have some positive (or at least practical) information about using this 6 day treatment, please share!  In the meantime, I feel a nap coming on...