Warning... long and rambling blog ahead.... The last few months have
been a bit of an emotional rollercoaster. Besides the MS diagnosis
(loads of DR appointments, piles of books, blogs, phone calls and
emails), life in general has been really busy. I had a proposal review
and contracting process plus kick off meetings and requirements
gathering with field and central office staff. I've been training and
mentoring my two interns, and compiled a new IT equipment plan for my
office. I've had Girl Scout meetings, a ladies weekend at the Girl Scout
camp I went to as a girl, travels to see family to the North (MS
Society Twins game) and East (Easter), the start of soccer season for
Abby, chaired another awesome STEM night at Abby's school, pulled off my
first Powderpuff derby races for our local area Girl Scouts, lead an
Iowa GIS Council meeting and compiled a new ballot for officers, read
three leadership books, and pulled off another successful, albeit
incredibly dynamic and stressful, program at the national GIS for
Transportation Symposium. I head to camp today with my Girl Scout troop
for more experiences in nature for my girls. Jeez when I add up the
last three months that sounds overwhelming to me... I guess it has been.
A week ago my mom sent me a card trying to remind me to take time out
for myself... She's right. The only real time I have had for myself
lately has been to workout, and until the last two weeks working out has
sucked because of limbs going numb. I also did a four week photography
class and am attempting to learn tai chi but so far both are an
exercise in frustration as I continue practicing. I'm going into my
sixth week of my meds at full dosage, and the side effects thankfully
have been minor. I had to travel with my meds this week as I was in
Vermont for six days for the GIS-T symposium. This is a week I always
look forward to. It is the eight time I have attended over the last ten
years, and it is a wonderful community of techy nerds like myself who
are all one big family. I get more hugs in a week at this than I do in a
couple of months normally. It is great to see old friends(never enough
time to catch up with everyone), learn new things, grumble about things
with people who can understand the things I do at work each day, and
make new connections. This week was more challenging then usual for
me. I mentioned the crazy fluctuating program which had me texting and
emailing with my team during nearly every session trying to keep up with
speaker and moderator swaps. That was horribly stressful and
distracting.
It was the first time I had to go through
airports with my medication and going out was ok, but coming back they
had to go all through my travel kit and test the icepacks and fuss with
my sharps. In the process I met another GISer who's wife has MS and is
pretty much in remission through diet after having taken one of the
injection meds for a few years. That gave me hope that all this effort
to watch what I eat might just be worth it. I was amazed I was able to
keep my energy up until the last day (the last official night of the
conference is the social and we went out dancing and got to bed early in
the morning... so fun.) As for food intake I did ok. The locals sent
me menus ahead of time so I knew I would have things there I could eat,
and where the menu was tigher I did make a couple substitutions. There
were a couple of times where I had a blood sugar drop but was able to
have some trail mix, a lara bar, or a ginger lemonade and then felt ok.
I am still at 10-12 lbs down in weight and that is likely where I will
stay. Hoping that as I ramp up the intensity of my training plan that I
will tone up a bit more but it is a bonus knowing I will be racing
lighter this year. I also got a couple of solid, hard runs in this week
but didn't push myself to do more exercise than I thought I could
handle thanks to long days. Having to take meds three nights in VT did
give me a good excuse and reminder to take care of myself and force me
back to my room earlier than in past years. There is still no love for
going through that process three times a week and I am getting bruised
more at the sites, as my squishy spots disappear due to diet and
exercise. See a pic of me at current state below.... finally feeling fit again.
So it
was an emotional week following months of emotional weeks. This one was
harder it seemed, with the added stress leading up to and through the
week because of my responsibilities (did I mention next year I am the
local host... no worries I am already building an awesome team to help
me.) I am sad it is over for another year. I already miss the
wonderful people old and new colleagues, but am energized with some new
directions to investigate, working group projects to participate in, and
new networks opening before me. Have I mentioned I love my job.
To
add to the emotional stuff, I continued to be floored by the kind
consideration people give me when they hear my story... yes I like to
talk (I like to think I am a good listener too) so I did share my MS
journey. I have been given this illness and it is my job to educate
others ... to be an example ... to be a success. I share my story
because it is part of the 'Shawn" story... it makes me stronger to know
all the wonderful people in my "network" are pulling for me to beat this
and I am humbled by their generosity and love. I got back from Vermont
today and poured through a week of unopened mail and found a card with a
book store gift certificate (yes I love books... the kind on paper)
from one of my training buddies. I also had another card and a box of
truffles from my favorite chocolate brand (yes high end chocolate is the
one vice I allow myself in moderation) from my truly amazing mom.
After
my last blog post my cousin made a comment about how strong I am.. it
is true I refuse to be a victim... but I commented back that it is hard
because there are always constant reminders that I have this awful thing
going on inside my body that could get worse even though I am doing as
much as I can to keep that from happening. I told her " I feel like a
harried, distracted mess waiting for the next frustrating complication
most of the time... guess I am a good actor. ;) " and she responded " We
all put on a public face, and sometimes we hide behind it. There will
be good and bad days. But you have a group of people who will love you
and give comfort and help. You need to just ask. Love you!" I know she speaks for many of you and all I can say is Thank You!
After
that conversation, I went and got a permanent reminder that even when I
am having a bad day, or a sad day or feel like I am hiding behind a
facade of optimism (no I don't do that very often... I prefer simply
being optimistic) that I have got the strength to fight this thing,
every day for as long as I need to. I am truly blessed... my life is
good... and I promise I will keep taking care of myself as best I can
although I am sure I will need reminders from each of you some days to
take time for myself, or to keep smiling, or my favorite thing a hug.
So I am going to shake off the sad, promise myself some journal time (I
don't need to share all the crap that bangs around in my noggin with all
of you) and get in to bed. The picture of my new tattoo is below.
I
have to wrangle a gaggle 10 year olds now, go to a preschool
pageant on Monday and attend the kick off party for my triathlon racing
team on Tuesday. I am super excited to get back to racing and even
more excited to be part of this amazing Kyle's Bikes team. check out
past blogs for my submission video and details. I plan to roll out a
series of blogs with training tips plus my race reports as we get into
the season. My first tri of the season is in late June, but I am
volunteering with my kiddos at a race next weekend. Until next time... thanks for reading.
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