The Feels, Crawling Towards the Light

Lately I've been pretty introspective.  Challenges and changes in my life have been stressing me out and I find myself sad, frustrated or over critical of myself.  

Am I doing everything I can for my kids? Am I volunteering enough, feeding them right, keeping them away from too much screen time, making sure I spend enough time with them?  Keeping them from over allocating themselves?  Am I providing a nurturing environment? Do they have enough gratitude?

Am I doing my best to move my projects forward at work?  Am I being a good mentor?  Am I doing enough outreach in my geospatial community?  Am I communicating my personal career goals to myself and my leadership?




Am I being a good partner?  Am I creating too much of a burden for my partner, friends and family?  Do I ask too much or not enough?  Am I being a good friend to the people and family that mean the most to me?

Am I managing the money I have for the right things?  Does it make sense to find a second job?  Does it make sense to turn part of my home into an income space? What do I need to do to meet my financial goals?

Am I taking care of myself?  Do I need to keep seeing a counselor to talk through things?  How broken am I today?  Am I getting enough quality sleep?  Am I getting enough exercise?  Am I staying away from the foods I know make me feel crappy?  Am I making downtime so I can rest?  Am I making time for friends and fun?  Am I doing my part to make the world a better place?  What do I want to be when I grow up (life goals)?

These are the many questions that some days make me want to go back home and crawl into bed.  But I don't... I get up and put on my best face.  I download my insecurities to my closest friends and my counselor but letting them also know I am okay because I acknowledge I do not have all the answers, and I make mistakes, and I am a bit broken but I feel good about who I am and where I am going even if sometimes I am VERY impatient with myself.

Last night I went to an Indigo Girls concert.  It was money spent I really didn't have but I wanted to take the three most important people to me (who aren't blood relations) out to do something that would lighten our loads and be fun.  The great thing about the IG is that they are wonderful story tellers, and wise women.  There were several songs they sang that talked about embracing the light.  From Prince of Darkness "I tried to make this place my place, I asked for Providence to smile upon me with his sweet face, But I'll tell you My place is of the sun and this place is of the dark (By grace, my sight grows stronger and I will not
be a pawn for the Prince of Darkness any longer)"

Another song that caught my ear was It's Alright "And for everything I learn there are two I don't understand, That's why I'm still on a search through the weather strewn church, I'm doing the best I can and it's alright, And it's alright though we worry and fuss, we can't get over the hump or get over us, It seems easier to push than to let go and trust but it's alright, When we get a little distance some things get clearer"

So I continue to wander down the path with a vision of where I want to go, but no clear idea of the steps to take to get there.  So sometimes I get jammed up pushing things along when I should really let go and trust that the small decisions along the way really will be fine.




I know I am pretty lucky (and extremely grateful) I have a wonderful family and extended family who have been with me from the start.  I have a handful of really amazing friends who get me and love me and pick me up when I feel like lying down on the ground and letting the river of life flow over me.  

This past year has made me more humble I hope, and probably not less stubborn, however more willing to ask for and receive help, and more accepting of others and the things they are fighting through (still working on that part with my ex but it helps my honey give me good perspective.)

                                                                          So I leave you with a few things I am grateful for... I am grateful for the hardships

Which reminds me of the Andy Grammer song I wish you pain "It's hard to say
But I wish you pain, I love you more than you could even know, Been here before and I just wanna see you grow"
I am grateful for a good job, a nice house, the ability to support my family and take care of us even when times feel tight.  I am grateful for the adventures we get to have together.  I am grateful to have an amazing love that is helping me grow into the person I want to become and growing with me.  I am grateful for the nature Iowa provides (despite the weather) with beautiful sunrises and sunsets, trees, stars in the night sky, and the promise of another day. So I leave you with the quote (above left) and ask you to be kind to each other, and support each other, and love, because tomorrow is another day and we can try again.

As always, thanks for reading.

The summer of unexpected

Well, as you all know it's been a bit of year for me so far.  Looking back at my summer I certainly had some expectations for how things were going to shake out.  Do some races to keep busy, move into my new place, and settle into a routine with the kids coming and going.

My race plans had a lot of hiccups.  I couldn't run the Drake Half-Marathon after a weeks of battle with MS fatigue mixed with food sensitivity issues and a bout of shingles.  I ran the Hope Run with Joshua and Joe, but couldn't run Midnight Madness due to leg issues I am still  working through.  I raced in the Ames triathlon which I signed up for at the last minute, only to opt out of Bluff Creek to spend time with my kids after either being on the road with them or not having them with me for many summer weeks.

My place still barely feels like home with mostly new (to me) furniture, new venue, and just a lizard to keep me company half the time.  I got moved into my new place and for weeks upon weeks I had totes and boxes and piles (still do really) on my porch, and in my parlor and bedroom.  We just got things hung on the walls a few weeks ago with the help of my folks and Steve.

Then there is the yard.  We got the trampoline moved out of necessity and spent several intense weeks building chicken coop 2.0 (there will be a separate blog on that) but neither of those are completely assembled in their normal functional state.  Then add the buckets and bags of plants I dug up from the old house, and all the plants I ordered with the hope of having a vegetable garden this year that languished most of the summer in place, only to get dumped out as water filled the totes they were hanging out in.

And the summer routine I thought would be simple ended up being a tad complex with mini vacation travels, Abby's first job (she taught swim lessons and life guarded at the local pool), an intermittent nanny, both kids off to scout camp, and grandma's house, loss of a friend, and a work trip plus travel for a big race (yet another blog), which left my head spinning and no real routine to be seen.


However, through all the crazy, and changes and reinventing I built some new friendships, conquered a few of the goals I set off to tackle, reintroduced myself to a new love that is constantly filling my bucket and I his, and started doing some of the things I've always wanted to do but for which I never had a willing partner.  All in all the last eight months have been a roller coaster of ups and downs but the driving force for me was hope for doing more than just surviving... finding my way to thriving.

So just know while I still struggle, and life it a chaotic and crazy most of the time, that I have found my way to thriving and I am loving it.  As always thanks for reading.

I leave you with the following quotes that I am aspiring to...

Slow down and enjoy life. It's not only the scenery you miss by going too fast - you also miss the sense of where you are going and why.
~ Eddie Cantor

In an age of acceleration, nothing can be more exhilarating than going slow. And in an age of distraction, nothing is so luxurious as paying attention. And in an age of constant movement, nothing is so urgent as sitting still.
~ Pico Iyer

MS Update - A New Ride in 2019

Well it is that time of year again.  I am registered to participate in an MS Bike ride.  I am not able to do the Iowa ride this year which is fine as it is only so exciting after so many years of doing that one.  So I signed up for a two day ride in early June only to learn that is the week I am due to close on the houses.  So third time’s a charm, I’ve signed up for a one day ride in May in Minneapolis (I hope it isn’t still snowing up there).

I have a couple of friends interested in riding with me but would love to have a few more people on our team.  The team sign up is here: http://main.nationalmssociety.org/goto/dream_team

As you know the MS ride is important to my family as I was diagnosed in 2013/14 and these MS rides are a major fundraiser for supporting the great work of the National MS Society.  Their big push lately is supporting research for people with progressive MS like some of my friends. They are also supporting research in mylien repair which can be of direct benefit for people like myself.

I know on the surface I look like I’m doing well and getting around fine (well maybe not on weeks when I am having a flare up but thankfully those are not frequent.). I still struggle with neuropathy (tingling) in my hands a feet, brain fog and slowness as well as occasional bladder control issues.  I’ve figured out things to help me when those get overwhelming and most of the time I do pretty good (so long as I manage my stress that is).  I am actually struggling with intermittent flare ups the last five days so I've been

taking time to rest since I will be on the road seven working days starting next Monday.

Anyway the purpose of this blog is just to do a gentle ask, if you can afford to help (even the smallest donations can make a difference if many people give) to send a donation to the MS society on my behalf and support the great things they do for people like me.     http://main.nationalmssociety.org/goto/ShawnBlaesing2019

Thanks for the consideration.  Sending you all love.

Just keep smiling and swimming

The last six months have been some of the hardest I’ve experienced.  There have been stress, worry and yes tears but hopefully my smile is quick to return and as the saying goes just keep swimming (good thing I’m a strong swimmer).  I’ve had some ups and downs and a few of the things I set down became even more evident as I plowed through four months of 1000+ unread emails in my inbox this week(note to self purge some email mailing lists).  I’m slowly starting to get my life back on track but the struggle has been real.  A friend said to me they wished they could find the bravery they see in me.  It feels more like surviving one day at a time but I am filled with hope that soon I will be thriving again.

January was filled with navigating paperwork to get the separation process started and figure out how to live together for the next six month.  February brought one health set back after another.  I had an MS flare for a couple of days that rolled into a couple of weeks of shingles rash on my face (still healing) followed by another MS flare.  That left me whimpering into March.  I started working with a dietitian in February to try to identify what my food intolerances are and was doing well until I started taking meds for shingles which left me struggling with upper GI issues and caused a hard stop on adding more foods I could tolerate.  For several weeks going to the super market threw me into depression.  I’ve grown so tired of eating the foods I know are safe after nearly two months of the same options.  Then I ran out of allergy meds (my acupuncturist ran out and I couldn’t get more in time) and had a major flare up with that which now has me hacking through the last of the drainage.  I have not had much control over any of this so just have to keep moving forward.

January through May is also my busiest time of year at work and I would not have survived so far without the help of my amazing interns who polished the training manuals we use with the field finished updating content with limited guidance.  I’m also doing an extra project from the agency director working with teams across the agency on improving engagement, so I’ve had a lot of extra travel on top of my regular travels to work with the maintenance and construction teams with their IPad technology.  I know my work output has been only enough to get by so trying to get refocused and get a handle on my projects that need more attention.  Starting to make strides in that area knowing I have four more weeks with work travel ahead but I love my job so I’m not complaining.

I’ve also been working with Joe to figure out what makes the most sense for housing, co-parenting, etc.  After getting beat out on a couple of properties he was interested in I was able to connect him with the family of my intern who graduates in May about buying their condo and that worked out.  Just before that while we were all looking at houses together Abby encouraged me to look at a house up the street that was out of my budget.  It turns out it has a tiny house behind the garage that is income earning with a long-term renter which put it well inside my budget so in early June we will all be moving back to town with Joe out by the middle school and me just a couple blocks north of the library in Ames.  On the selling of our beautiful acreage which neither of us could afford to stay on, an acquaintance from the ISU pep band saw me post about it on FB and we now are working through the last of the details for that contract.

Pieces are starting to fall into place but still a lot of work ahead to start the next phase of my life.  I’m sure there are more though days ahead, and I’ll be asking for your help along the way but I have hope for brighter days and new adventures ahead.  As always thank you for reading.

Serendipity versus The F'its

Anyone who knows me well knows my life is busy most of the time.  Filled with soccer games, scouting adventures, interspersed with busy work demands and my individual adventures.  Needless to say it can be easy to get overwhelmed and things came to a head at the end of May.  We had just had my car detailed with the intention to sell it, as it had been nothing but trouble since the day we drove it off the lot.  I was called to a last minute early morning meeting so my car and I rolled south to get there by 7am.  I had just pulled off the freeway into downtown Des Moines and was passing through an intersection when things exploded around me with airbags and crunching metal.  A woman had run a fresh red light and smashed into the driver side of my SUV.  We both walked away with totaled cars but grateful that was all.  I was delivered to my meeting just 15 minutes late thanks to the kindness of a Des Moines police officer (did I mention it was my birthday?). It worked out in the end as we ended up getting a big ol Chevy pickup truck from a Federal government auction.  Its great driving a truck again despite it being a king cab with a full sized bed... yes I am running in to a fair number of curbs but we are working things out the two of us and it is great having a a vehicle to haul stuff and seat six humans.

Walking a half ironman

The crash was three weeks before I was to race in my 3rd 1/2 Ironman triathlon (1.2 mile swim, 56 mile bike, and 13.1 mile run).  Needless to say my training was derailed after the wreck but I managed to get some shorter runs and swims in but only one trainer ride in the three weeks leading up to the race.  I had the green light to race but knew it wasn't going to be the race I had planned.  Travel for this race was part of our family vacation to Chicago and Madison with stops to see family throughout so not going was not an option.  I was realistic that this was not going to be an easy day for me and for more details you can read my race report for a day that ended up being great but not what I expected.  It was part of a string of events over the summer months that had me in a battle between serendipity and the F'its.

On the F'its side my body was fighting me.  I spent all summer rehabbing shoulder damage from the crash on a shoulder that already had issues from a decade old soccer injury.  The going was slow and my drive wasn't great.  I diligently did my exercises each week but always felt like I should have been working harder to be worthy of the time with my physical therapist.  The downside is being heavier with tighter pants than I've had in years, but I know I can fight back from that again because I have done it before.  The bright light from the shoulder injury is my PT is a friend and I enjoyed hanging out with her even if there was pain involved.

I was racing triathlons this summer with Pearl Izumi as my sponsor and 90 plus lady racing companions around the country, so my goal at the season onset was to do four triathlons (1 1/2 Ironman,

My best girl

2 Olympic distance races and one Sprint.). Needless to say my season turned into 1 1/2 Ironman, 1 Olympic race and two sprints combined with a near loss for the love of a sport I've been participating in since 2007.  I lost that competitive edge somewhere in the stream of medical appointments June through September.  I even had some fleeting thoughts about quitting triathlon for good.  The last two races, the sprints, I ended up just doing for fun and the love of sport with no expectation of PRs or age group wins.  My last race of the season I had my daughter with me cheering me on and that was worth more than any finishing awards so while my season was tough it wasn't without bright lite along the way.

Abby and Bella

Another time suck for me in the spring and summer was many a trip out to my friends farm.  Abby (our future family vet) and her friend Chloe have been raising goats to show at the county fair.  It feels like a family venture since I had to drive her there each time and nearly daily in the last couple of month leading up to the fair (between soccer practices, etc.). Fortunately these are some of my favorite people. I got to spend time visiting with my friends, play with kittens, feed the chickens and pigs, snuggle baby goats, weed the gardens and help with the harvest but most of all watching our girls grow in their experiences.  While it was a burden to get back and forth I think I got more from it than I gave most of the time.

Day one on the Island

While all of this was going on I had a series of not great visits with my doctors.  My blood work numbers were all over the place and continued to get worse through the summer along with a heaviness that ended up being depression fueled by my MS meds.  The veil lifted a bit in early August when a planned break from my MS meds started.  I was planning on a backpacking trip with my cousin to see the beauty and wilds of Isle Royale a National Park on an Island off the tip of Minnesota and Michigan in Lake Superior.  I knew I wasn't in the physical shape I'd hoped to be in by the time it came to head north.  My shoulder was stable but not healed, my pack was new and heavy, but my spirit was lighter and my need for time away in nature was huge.  The planned break from my meds ended up being nearly three months off but back on track now however that is a blog for another day.

Unseasonably warm weather the first days on the trail, followed by a major ankle blow out at the end of the first day hiking made things tough.  The next two days were cooler and increasingly wetter.  My shoulder had me ebbing on the edge of tears at times, and I needed a big stick to keep marching forward on my unsteady ankle, but you know I wouldn't have traded any of it.  It was an exercise in physical and mental toughness that had become my specialty this summer.  It didn't end up being the reset I had hoped for but it rekindled my love for backpacking, tent sleeping and enjoyment of the great outdoors with interesting people.  I hope to have years of great family and personal adventures hiking the trails and experiences in the parks of America.

My brother and I at the crash site in Clear Lake

My best guys

While my summer experiences were a balance of the F'its and serendipity, overall I am grateful for every one of them even if they were not what I expected.  I am appreciative of every day where I can push myself, learn from the good and bad, and spend time contemplating on my own as well as in good company.  I wrapped up the summer with the kids heading back to school, soccer and scouts... but also family camping (first time with all four of us ever!), geocaching adventures and great times with my folks, brother and kiddos.  Life is good, and while it has its challenges and rarely ends up the way I expect, I am grateful for every new day.  Sending my love out into the world to each of you until next we meet.

MS Update - The Invisible Enemy

Life has been roller coaster of ups and downs since my last post. We had the holidays roll through, the start of a new year, and all the other activities that fill up a week and leave me mentally begging for time in a quiet cabin with a pile of books and a yoga mat by myself. But alas the demands of life (work, kids, spouses, pets) while wonderful and things I am grateful for continue to take away from things I want to do and downtime my body needs.

The funny thing about MS is that unless your disease has progressed, to bystanders, it is hard to tell there is an invisible enemy dragging you down. The last week has been tough for me. I know I have mentioned in past posts that what I struggle with what you can't see. The bladder urgency issues that mean I can't wait until the last minute and if you see me racing towards a restroom please get out of the way. Of course the restroom in my building is closed for three days so I have a flight of stairs and an extra 50 yards to go to get to the closest one. Fortunately bladder issues come and go so I may have a few weeks or a few months between bouts.

When I am having what I call a flare up, I can also have muscle weakness on my left side. This effects my walking gait a bit and can make me a little wobbly. It also effects my hand strength and my ability to grab and hold on to things with my left hand. During a flare up I also get incredibly tired. I take an herb called MitoQ that helps with that so the flares end up being less intense and not as long but part of that makes me worry it allows me to push too hard.

I won't stop taking it though because my most frustrating unseen symptom is what I call swiss cheese brain. Yeah I'm getting older and yeah some of this supposedly comes with the territory. I guess I disagree... let me give you an example. I had three weeks of no herbs between refills as my MitoQ comes from New Zealand. I was in a meeting at work and my boss had to step out so he handed me the dry erase marker to keep writing down ideas on the white board. I was in the middle of spelling a word and completely lost the last five letters. I had to ask my coworkers for help finishing (yes I am a bad speller, no that isn't was going on here) It seems my brain is often on a five, ten or thirty second delay so patience is important if you are waiting for me to extract something.

The National MS Society has done some great videos on invisible symptoms so if you have the time and are interested in learning more check out the links below. I just wanted to give you all something to think about today. What you see on the surface doesn't always paint a clear picture of what is real. This is true for people who struggle with MS, cancer, depression or any other illness that doesn't always leave a mark on the surface. Take the time and patience to learn about what is real. As always thanks for reading... now if I could just get the kittens to let me sleep until the alarm goes off that would be super!

Here is a scientist take on MS fatigue I thought was interesting... “Fatigue is something we all have, but lassitude is related to myelin damage itself," Burks says. "The myelin’s job is to insulate the nerves so that messages get through quickly. When the myelin is damaged, the messages don’t get through as quickly. It takes more energy, and the energy that it takes can cause people with MS to get overly tired.”

http://www.nationalmssociety.org/Programs-and-Services/Resources/Invisible-Symptoms-in-MS-Part-1-(video)?page=1&orderby=3&order=asc

http://www.nationalmssociety.org/Programs-and-Services/Resources/Invisible-Symptoms-in-MS-Part-2-(video)?page=1&orderby=3&order=asc

http://www.everydayhealth.com/hs/multiple-sclerosis-symptoms/invisible-ms-others-cant-see-symptoms/

MS ... sometime it just sucks.

Well another busy weekend and fun trip playing hooky to Kansas City and now the body has had enough.  But before that here is a health update.  Last week I had my labs run, my first mammogram (clean), and an annual physical with my regular doctor.  I always do this around my birthday so I remember.  As it turns out my MS meds are adversely affecting my blood counts.

From my drug company's website possible side effects: "Blood problems. You may have a drop in the levels of infection-fighting blood cells, red blood cells or cells that help to form blood clots. If the drop in levels is severe, it can lessen your ability to fight infections, make you feel tired or sluggish or cause you to bruise or bleed easily."  I am feeling sluggish, bruising easily, and my white blood count has dropped to half what is was but I am still clotting ok (the new kitten has been testing that for me).  As my dad pointed out (he used to be a drug rep) that so long as the white blood cells I have work right that I can still stay healthy.  I just plan to steer clear of contagious people.

I had been having abdominal pain much of last week leading up to my appointment and with my labs being monitored already my doctor worked on the side of caution.  I spent Friday afternoon sitting in the clinic reception drinking horrible goop and waiting.  I had a CT scan with contrast and then had to wait some more to make sure I didn't need surgery for appendicitis.  It ended up being nine hours without food but I got through it and it turned out it wasn't my appendix it was a ruptured cyst on my ovary.  Apparently I have a family history of these and they resolve themselves over time but can make a person highly uncomfortable.  My doctor called my on her afternoon off to give me the results.

I have to give my primary care doctor, Dr B a big kuddos.  She is about my age and has been incredibly supportive of my health care needs for the last six years.  I asked her why she didn't press me a year ago to have MS testing and she said she likes to let people run through their course of options.  I appreciate her listening to me about my thyroid and where I feel best with my test numbers.  I appreciate that she moved her schedule around to tell me herself that I have MS and offered to be there for any questions or needs I might have related to things I might experience on this journey.  It makes me feel better to know she and her awesome nurse have my back.  You should know I struggle with mainstream medicine because I feel that MDs are traditionally trained around pharmaceuticals and symptom treatment, and do not get the training they need to look at the big picture and troubleshoot the root cause of people's issues.  I have three years of experiences with neurologist who couldn't diagnose my root problem because I passed all their tests but still had unexplained issues.  Anyway stories for another day, so it is a big deal that I appreciate my primary care physician.

So what have I been up to?  Well, Saturday morning I had an awesome time being "coach Shawn" to a group of 25 - 9 and 10 year olds learning about triathlon.  It was super fun and I plan to help out again in a few weeks.  Hopefully Abby can come with me next time as she wants to do a triathlon this summer too.  Then I raced up to Ames to watch Abby play in her last regular season soccer game.  Her team has REALLY improved over the last few weeks and I am really proud of the progress of Abby and her teammates.  They had soccer tryouts for next year and I wish each and everyone of them the best as they fragment onto new teams next year.  Most of them have been playing together since first grade.  Saturday afternoon we had our Girl Scout potluck... my sketchy narrowing in one dates left a few people confused but we had a nice time with the families that came.  The girls picked the badges they want to work on next year.  Now to spend the summer working on getting one or two helpers so I don't have to do it all myself.

My mom and husband (although he now says he isn't going to say anything to me about my scheduling) keep giving me a hard time about doing too much.  But the thing is somethings keep me going.  Like coaching these kids in triathlon, doing triathlon clinics, and most of the time leading my Girl Scout troop especially at camp.  It makes my heart sing... and while not required activities they are things I enjoy... it is the required activities that drag me down (getting the kids out the door in the morning, cleaning my piles of crap up... etc.) so keep up with the gentle reminders to slow down, but remember I need the heart sing opportunities too...

Sunday Joe and I dropped the kids off with my folks for almost a week.  On the way home we talked about running away to Kansas City to try to take in a Royals game.  Even though the weather was to be sketchy Monday night we decided to go.  It poured Monday night and Tuesday morning, but we shopped and giggled and had a lot of much needed carefree fun.  We even went and ran three miles together on a trail across from our hotel in the pouring rain.  We almost never run together and it was a fast, fun run for me and my heart sang.

I have to say though that it all caught up with me this afternoon.  After two hours in the car Sunday, four hours on Monday, six hours on Tuesday (had to go to Des Moines to pick up Joe from work) my body is saying that is enough.  So while I wanted to go pick up the free bricks to line my new as of yet unplanted garden bed, and mow the more than ankle deep front yard before going on my first triracers Ames ride of the season... my body did boycott and the only thing I managed to do this afternoon was take a quiet nap for an hour, eat the dinner Joe made for us, and write this blog (while Joe mowed the front yard and then played with the super energetic kitten) which is a major effort to type.  So I am going to head to bed and hope tomorrow leaves me with more energy so I don't have to let myself down again... and can keep up with my kids when my folks bring them back tomorrow.

I just want to say I appreciate you all.  I had several people tell me today they are impressed with how I handle this illness, and while I shed a few quiet tears today, I try to continue to be that person you all believe I am.  As always... thanks for reading.  Remember if you are willing and able... please consider a donation to my MS Bike ride next week.  I will get it done even if it takes me all morning...   Shawn's Bike MS fundraising page

Quick MS Update

Just wanted to post a quick MS update.  The last two weekends have been super busy with the end of preschool for JJ.  We rode our bike with third wheel to the library, my office and then to preschool to ride the Cyride bus and have our end of year preschool.  Next year JJ is off to kindergarten.

 

Saturday the 24th started with a bike ride with my triathlon team, watching Abby play part of a game in a soccer tournament, and then JJ and I went on a mission for flooring for our bedroom.  Then Abby and I had a date to get pedicures thanks to a gift certificate from a friend.  Sunday was  my 40th birthday.  I spent the morning cleaning house, had brunch cooked for me by Abby and Joe and then had a surprise visit from my dear college friend Kara who was passing through with her family on their way home to Texas.  We wrapped up the day with a splurge to Hickory Park and then had DQ chocolate ice cream cake.  It was a great birthday. We started off Memorial day with Joe and I going for a training ride so I could finally hit the road with my team tri bike.  What a sweet ride!!  Thank you Kyle's Bikes for sponsoring me.  I am loving this carbon fiber ride.  To close out the long weekend we had neighbors, friends and coworkers over for a potluck and were blessed with great conversation and beautiful weather.

This past work week my office packed up and moved from the north end of the complex back to the south end of the  complex where we normal are housed.  It was a lot of packing, hauling boxes and still persists in chaos.  I spent parts of last Friday pulling up carpet in the bedroom.  The joys of pulling staples and tack strips by hand... ah.  Saturday morning I painted an accent wall and then spent much of the day between shuttling kids around, helping my folks help me install new flooring into the bedroom (see facebook for photos).  We had a nice family dinner of a rare pizza and left over birthday cake.  Sunday we hit the yard hard.   I have three 4x8 raised beds in the backyard and several flats of garden starts I grew in my basement in need of some outside time.  I also had the idea of expanding another bed in the yard to make room for a sunflower garden and a space to plan cucumber and zucchini plants as they take up more room in my boxes.

Joe got the lawn mowed while the flooring was going in, and then tackled the tiller to pull the sod up for the new garden.  The kids helped a little in the pulling out of a dead tree and bush and planting of two new plants.  We got the garden all processed and new soil added but didn't get the plants in yet.  I have been watering them and they are protected on the screened in porch.  So anyway we have been busy which is why I am up way past my bedtime writing this blog (write or explode).  Oh did I mention we got a kitten on my birthday.  She is around 6 weeks old and still doesn't have a name but is so funny and cute.  She has yet to be introduced to the two big dogs, and the older cat.  She has however met our visiting Bearded Dragon who will be staying with us for June.

So to my quick MS update.  I am still taking my meds.  I am still symptomatic.  The heat seems to be causing a flurry of activity just when things seemed to be quieting down.  I met with the MS Lifelines nurse (sponsored by my drug company).  She gave me a few pointers and was great to talk to.  I also had my first round of labs run last week as part of my yearly check up.  I see my doctor later this week to see how things are going as well as having my first mammogram.  I will give an update next weekend.

The highlight of my week was making new MS friend connections.  I know I keep promising a post about the great people I have met who have MS... I will get there eventually.  At the triathlon clinic last week I met a man training for his first triathlon whose wife has MS.  He is riding the MS ride in Ames which I have also signed up for (see my fundraising link below).  We have already connected on Facebook.  Then I had a great conversation with a friend of one of my swimming buddies who has secondary progressive MS.  He is the first person I have talked to whose disease is progressing.  We have also connected over email.  The last great interaction I had is with a coworker who has MS.  We had lunch together and is seems we are MS twins.  He is the first person I have talked to who has the same symptoms as me, who has taking the same meds as me, and who has had similar struggles.  It sucks that anyone has to have MS, but it is nice to know there is a whole community of people out there who get my struggles, who want to hear my story and share theirs, and who are amazing people.  I truly am blessed.

Here is a wonderful article about making photos of the invisible symptoms of MS.  We look normal on the outside but feel far from normal on the inside.
http://www.couriermail.com.au/lifestyle/health/inside-multiple-sclerosis-the-invisible-disease-and-the-seeingms-exhibition/story-fnihoylo-1226934170326

I have one more thing to share.  I signed up to do the MS bike ride in 19 days.  It is a fundraiser for the MS Society to raise funds to do patient support, educate people about MS, and fund cutting edge research.  Even the smallest donations can make a difference so please consider donating to my fundraising page.

http://main.nationalmssociety.org/site/TR/Bike/MNMBikeEvents?px=13447566&pg=personal&fr_id=23097

Thank you 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.

A video of "Shawn"

I recently submitted to be a sponsored triathlete with a local bike shop (Kyle's Bikes in Ankeny). Part of the requirement was to create a video about myself. While I made several attempts to make an actual film video I didn't feel like it was as interesting as what I ended up with.

Even if I don't get picked it was still fun to put together so I thought I would share with you. http://youtu.be/djFnxvcnDac
Let me know what you think. :) I'll up date this on the office chance I fit the bill.

As an update on this 1/21/14 I did get picked for the team.  I have the most triathlon experience (races, years, and age) of the six on the team.