MS Post - Body Screams for Mercy

I knew going into to 2014 that the end of April and beginning of May were going to be busy and stressful.  Normally I know it would likely impact my thyroid and adrenals and that I would coast into May on fumes.  Being diagnosed with MS seems different, as even though I will likely struggle with my thyroid and adrenals I had finally somewhat figured out what I need to do to keep from tanking.  With MS I am starting at the first chapter of a book that hasn't been written yet.  I don't know what the beast will throw at me.  So far it has been numb hands and feet, which got worse the last 10 days.  Mild headaches from my meds actually dissipated the last two weeks with all the stress but are back hammering me in the head this morning.  The adventures of bladder control and three times a week injections (with an ice chaser) plus the joy of workout related flare ups (the creeping tingles) these things have all shown themselves and I am adjusting.  Photo below is one of the injectors I use to take my meds.

The last two weeks of April were busy at work kicking off a new project with a new contractor team.  As the program chair I also had a lot of program changes coming in for the 2014 GIS for Transportation Symposium.  So heading to Vermont the first week of May for this international conference with over 350 people, and four tracks of talks over three days I was already stressing.  The conference was wrought with constant program changes unlike I had experienced before and this is my fifth year working on the program.  Not sure what the deal was as we are pretty regimented in our protocols but just a lot of people being unprofessional with last minute decisions.  I found myself sitting in sessions getting texts and emails with more and more changes and that drove me to my room many afternoons to lay down and have quiet conversations or naps.  I came away from the conference having gotten enough sleep all but one night, minimal drinking and a pretty health intake of quality food.  I even got three short and sweet workouts in while I was there.

Of course then I get back to Iowa and the next day went to Girl Scout camp with nine of my troop of fourth graders.  We had preplanned all the food and another mom made that happen for us so I basically just had to show up at the drop off spot and go have fun.  We had a great time of hiking, archery, fire building, camp stories and even got some decent sleep.

I got home from camp and the family thrust Mother's Day upon me.  To top it off Joe and I had a huge fight which is pretty rare.  Monday night we had JJs preschool program and Tuesday night I had my triathlon team kick off gathering and by Wed I hit a wall.  I normally stand at work part of the day as my computer is on a stand that goes up and down.  By noon I was forced to sit.  Thursday morning I could barely drag myself out of bed, but I did it anyway because that is how I am.  I spent the whole day sitting, very still, wishing I was home laying down despite being quite productive.  That night I took Abby to soccer and spent quiet time journaling.  By Friday morning I was feeling only a little bit better and managed to get through the morning before finally going home and taking a nap.  I knew I had to go serve dinner at the soup kitchen Friday night and volunteer at a triathlon on Sunday plus time at the soccer pitch Saturday morning.  The nap Friday helped me.  I started Saturday with my forth day in a row with no exercise which was making me stir crazy!  I had a lot of fun on Sunday at the triathlon serving water with my kids and came home for a rest before spending a little time in the yard.

By now you are probably thinking "what are you doing Shawn!!"  Yeah me too.  When fatigue hits me (not something that is new to me unfortunately) I feel like I have led in my arms and legs.  Even the slightest effort, like holding open a book, or taking a step require the most focused effort.  All I want to do is lay quietly and watch a program on TV or sleep.  All the while the things I know need to be done are eating away at me.  I am terrible at being idle but I clearly need to work on reprogramming myself.  My friends with MS all said that when fatigue hits I need to listen.  I was completely overwhelmed by the intensity and duration of this round.  Things are slowing down for me now, my list is still long, and I get my temporary summer friend (a beautiful new specialized racing bike) tomorrow so I hope to get back to training very soon.  I did go to my core class today and stayed for the five minutes of corpse pose at the end.  It went way too fast, so with that, I will try to work in more down time, ask for help more, and keep trying to figure out how to manage my stressors.  As always thanks for reading.

MS Update - Just Breathe and Some Perspective

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.