It's only Fair.

I shared with my dear friend, Renee, this weekend while we were camping that I have lost my way over the past few weeks.  My training has slowed to almost nothing as everything has begun to pile up on top of me.  I have a tendency to allow things to get to a point that I can no longer carry them and so I set them down.  And sometimes picking them back up is nearly impossible.

So I told her that I have been trying to figure out if writing this here in my blog would be good or detrimental.  If it would help me or help others who may happen to read it.  As I was talking to Renee, her supportive head nods, looks of understanding and mm hmms, I realized that by not sharing what I was struggling with I was robbing myself and others dealing with healing, in whatever fashion that may be, of knowing that ups and downs are there for each and every one of us.  That it really wouldn't be fair to not share it.  And so, here I am.  Spilling it all out on the page, trying to refocus, learn something, get it all out there and maybe, just maybe give someone else a moment of relief from the fears and anxieties that they too may have.  I wrote earlier that my goal for this year was to find a balance between running and organizing the SJS events surrounding the half marathon.  It seems to me that I have lost that balance. 

On our last night of camping, my husband and I sat around the fire well after the boys had gone to bed.  You know how the colors and the heat from the fire can be so mesmerizing?  I finally began to think about what it is that I am actually trying to accomplish.  If you don't stop and think about it and simplify it all, it will begin to consume you and that is what has begun to happen.  Plans for the pasta dinner, getting people housing if they need it, asking for donations, ordering team shirts, getting registrations turned in for people, raising awareness, answering questions, interviews, speeches, and so on.  It's a big job!  And then the training comes in.  Making sure you have the right shoes, eating the right things to prevent further issues, hydrating, following the schedule, putting the shoes on, mapping the routes, keeping track of the miles, actually running them.  Fighting the voice inside your head telling you to run faster, slow down, run farther, that short runs are as important as long runs, don't forget to run hills, do this, do that, don't do that!!  It never stops.

I shared all of this with Mike, afraid for some reason that he would brush it off.  Tell me I'm overreacting or something similar.  But I was so relieved when he didn't.  Instead, he told me to tell him what he can do to help.  Relief began to wrap itself around my shoulders and it shoved the weight right off and onto the ground.  He told me to remember that the most important part of Team SJS is the healing it provides to those who have suffered and that includes the ones that love them.  Raising money and awareness are necessary parts, but that isn't what my original goal was.  And he was right!!  I had forgotten what it was I was doing! 

Now, if I had just gone back through my own writings and rantings I would have seen it for myself!  I would have seen that I have always found it to be so important for people who have had SJS or TENs to realize that although life is different, it isn't any less great!  That we can do things that amaze ourselves and others and feel good about that! It just might be the reason we are still here!

The next morning, I was feeling a bit less pressure, but being the non-morning person that I am, I was  CRABBY!!!  The answer to that was an easy one.  I changed my clothes and put on my shoes prepared to run 5 miles.  I needed to sweat out the negativity, needed to breath in the clean and the fresh and push myself past a comfortable place and see myself go farther than I believed I could.  To set a goal and nail it, even though it was a distance I had run so many times before.  So I did!  And did it well!

After talking to Jim, my coach, I am back at it and feeling pretty good.  We have just under 6 weeks to go until the big weekend, but I am on this up and down journey for the rest of my life.  I'm facing an 11 mile training run with my fellow running group on Saturday.  Scared yes, but knowing that I am not alone in it.  Just as I have learned through my illness,  I am never really alone.  I have made life long friends and I have an incredible husband who is there through it all.  Two boys that love me, with or without my disabilities.  And numerous family members and friends who know that I am still who I was before June 28, 2008.  I was a spirited fighter then and continue to be now. 

As most of you know, music is a huge part of my life.  It heals, it comforts, it conveys anger as well as love and sometimes it gives you a voice you never knew you had.  There's a song that I sometimes listen to when I feel so lost, so angry, or so alone.  Written by Audra Mae, it goes like this:

Who I Was Born to Be

When I was a child

I could see the wind in the trees

And I heard a song in the breeze

It was there singing out my name.

But I am not a girl

I have known the taste of defeat

And I've finally grown to believe

IIt will all come around again.

And though I may not

know the answers

I can finally say I'm free

And if the questions

lead me here, then

I am who I was born to be.

And so, here I am

open arms and ready to stand

I've got the world in my hands

And it feels like my turn to fly.

And though I may not

know the answers

I can finally say I'm free

And if the questions

lead me here, then

I am who I was born to be.

When I was a child

There were flowers that bloomed in the night

Unafraid to take in the light

Unashamed to have braved the dark

And though I may not

know the answers

I can finally say I'm free

And if the questions

lead me here, then

I am who I was born to be.

Through all of this, the ups and downs, the failures and the triumphs, the pressures and the stresses, this is who I was born to be.  A mother, a wife, a friend, a daughter, a sister, an aunt, a runner, a support and yes, a Survivor.  Sometimes even a pain in the ass!  God don't make no junk!  Here we go, people!  Le's get this thing done!!

Winner, winner, chicken dinner!!

Last weekend, Mike and I were asked to speak at our local running store, Fleet Feet,  to a group of runners about midpack running as well as my experience with SJS.  Mike was great!  He talked about his own marathon and half marathon experiences, what he has learned over the past ten years that he has been doing it as well as tips for how to dress, not trying GU for the first time during a race, keeping track of miles on your shoes and running your own race.  He made us laugh, made us think and honestly made me proud!  That there was my "coach" telling everyone all of the things he had shared with me, the things that have gotten me to where I am today.

And where am I today, you ask?  Well, I'm sitting on my back deck, watching our son play in the pool, hydrating with my very favorite, Rain Berry Gatorade, freaking the heck out about tomorrow!!!  All because Mike and I are sitting at Fleet Feet last Sunday listening to the owner of the store talk about this half marathon training team that has just started.  There are beginners and intermediate runners in the group and it's led by a coach.  My ears perked up a little, since I have thought time and time again about how nice it would be to just have someone tell me what to run and I would do it!  How it would be great to get to run with other people on those long runs to help keep me motivated. So Leah asks us if there is anyone in the group that would be interested?  Mike gives me a jab in the ribs and mumbles to me to raise my hand.  Ok, so I had thought about how nice it would be to just do the workouts, have someone to run with, blah, blah, blah, but I had gotten myself a really good system down!  I was staying motivated all on my own, although somedays were a little tougher than others, getting my runs in, watching my nutrition and hydration and keeping track of my miles, times and training schedule.  So I really wasn't in need of a new coach, I had me!  Well, that's when I felt my dang hand shoot right up into the air!  What the heck??

Hoping that no one had seen it was useless, Leah had and said as much.  She then announced that she was going to raffle off one free entrance fee for the training program.  Holy cow!!!  For another brief minute, I thought how awesome that would be.  Having a coach, other than your husband who has been running longer than you, is expensive!  Really?  Who gets to do that?  Not this girl!!!  Heck, I cringe every time I get close to 300 miles on my shoes and I have to break down and buy new ones. With the medical bills we see come through our mailbox, luxuries like that just aren't a possibility. 

The group was told to think about it throughout the seminar and she would ask again at the end.  And at the end, Leah, did ask if anyone else was interested.  I scanned the room, noticing that there were quite a few women there and that some of them were already in the program.  They had just done their first long run the morning before.  As I waited for someone, anyone, to raise their hand to get a chance to win this incredible prize, no one did!  What??  Are you people crazy?  This is big time stuff, people!  Someone to help push you when you need it, someone to see your potential when you can't, a person you can ask any running or injury related question to!  What is wrong with you?  Raise your hands...so I'm not the only one!  Because then I would have to run whatever he told me to run and that includes some big hill they have named after my Lord and Savior, Jesus!  And honestly, that scares the hell out of me! 

And wouldn't you know  it, I was the lucky winner!!!  Again, I never win anything.  Not even BINGO in French class!  Not once!  But it was my lucky day to get to be able to join a really great group of people in this journey to the finish line.  I really am very excited about it and I have done all of the runs Jim has scheduled for us this week.  Even my very first hill workout.  I had never done hill repeats, and honestly, I now know why!  They are hard work!!!

And that is why I am freaking out, sitting here the night before our 6 mile run early tomorrow morning.  Jim's gonna push me.  He's going to make me work harder than I have made myself thus far.  I have challenged myself and asked myself to do things I never thought I would be able to do, but we all get to that place where we think we can't go any farther when in actuality we can.  Whether it be about the simplicity of running or the complexity of every day life, we stop and teeter on that little line we have drawn in the sand for ourselves wanting to step over it, but allowing the fear of the unknown to hold us back. 

This is my chance to get to see what I am really made of.  Yeah, I ran 13.1 miles last year and I am proud of that!  Will always be proud of that accomplishment.  But now, I am ready to go further.  I am ready to be stronger. I am ready to be pushed.  Let's just hope it's not off a cliff!!

Is it in you?

Yesterday was the biggest race I have ever been in!  Over 18,000 runners and walkers lined  the streets of Green Bay for the Bellin 10k.  18,701 to be exact!!  My good friend, Renee, had asked if I wanted to do this race and I was honestly taken aback at first.  I asked her if she realized that this race was 6.2 miles long?  You see, Renee started running just last summer for the Fox Cities 5k as a member of Team SJS, and she had told me then that she wasn't sure she could do it!!  She trained diligently and struggled emotionally with the "But if I walk, I'm not really a runner" mind game that we all play with ourselves at one time or another.  Well, she did that 5k and nailed it, just like I knew she would!!!  And then, she ran another 5k this spring in the rain, sleet, cold, thunder and lightning!!  This time, I ran it with her and the fact that she even showed up told me that this woman was serious!!  I have to admit that she did do a little whining along the route about the crappy weather, but hey, who didn't?  Had she not been running it with me, I wouldn't have even thought of doing that run!  It was miserable!! 

So yesterday we rode to Green Bay together, ready to tackle the Bellin.  Renee shared with me her goals for the race.  Her C goal was to do it in 1:20:00 and to run more than she walked.  Her B goal to finish and her A goal to not need medical attention!  I laughed at that one!!  I shared with Renee that my one and only goal for that day was to break my PR of 1:14:58 from last year's Otto Grunski 10k.  It had been my first 10k ever and the day hot and humid!  My stomach was cramping, I was dehydrated and sick and the race was terrible.  I wanted to run this race with strength and speed and to not have to deal with the dreaded stomach issues that had plagued me the entire season last year.  I was nervous, anxious and a little afraid.  Afraid mostly that my body would once again fail me, even though I had worked so hard to get it read for this big day.

We hugged Renee, took pictures and wished her luck before saying goodbye at her corral.  Mike stood next to me on the other side of the fence in Corral 4.  It was a little strange to have him there in street clothes and not running this one with me.  I was on my own to tackle this beast!  There were people as far as I could see, which always makes me think about the possibility of tripping over someone's feet if they cut me off from the left side, my blind side.  I couldn't imagine going down and hitting the pavement with thousands of runners and walkers still behind me.  I knew that it would cause a domino affect and that I wouldn't be the only one kissing the pavement if I wasn't aware of who was around me. And normally, in any given race, the beginning is tight, but then people pretty much spread out over the course.  But not this one, not with 18,000 of us running at the same time, in the same direction.  This one was gonna be tight the whole way through.

After the standard speeches, National Anthem and introductions, the gun apparently went off.  I don't know, I was so far back in the pack I never heard it. The masses began inching forward and closer to the start line.  It took about 10 minutes for us to get there, but eventually we were off!  My headphones singing in my ears, I stepped lightly and held my left arm out away from my body just enough to give myself a cushion from anyone who may bump into me.  I may not be able to see them, but I was damn well gonna know they were there! 

It took awhile to get comfortable with all of the people, my breathing, the constant distractions.  There is something truly amazing about those quiet training runs when you are all alone and able to think of only the things you choose to think about.  This time, I had to fight with the white noise to get into the "zone."  I eventually got into a rhythm and at mile three, I knew I was clipping at a good pace.  I had figured out that I  could definitely do a 1:07 if I stuck to an  11 minute pace.  My watch was showing me 10:22 for the first mile and 10:42 for the second.  I knew that if I just stayed where I was and settled in, I was going to do it.  Mile 3 had a huge downhill and I thought for sure I was going o go head over heels on that one!  But when I checked my watch, it was a 9:54 and I knew that these last three miles were gonna have to be steady. 

By the time I reached mile 5, the burning in my legs began and I could feel myself wanting to slow down.  I was pushing myself to the limits and I had been afraid to do that for a very long time.  I have had this fear of my body failing me ever since the SJS.  Primarily because it has!  My eyes have failed me, my feet have failed me, heck even my fingernails have failed me!  Loss of vision, nerve damage and atrophy, damaged vocal chords, scarred lungs, ugly skin and the loss of finger and toe nails all made me believe that my body was no longer as good as it used to be. That it was damaged and I would never be good at anything again. I had been doubting my own abilities and my own potential to do things I had once been good at as well as things I had never done before.  It was at that time I remembered Emilie's blog about fear.  If you remember, I just met Emilie through her blog this past week.  An SJS Survivor herself, she is competing in an Iron Man on the 26th of this month.  She wrote about digging deep to realize what your true fears were and breaking them down to minute pieces where you can dissect them and overcome that fear one piece at a time.  As I remembered that, I realized that there are so many runners out there with obstacles much bigger than mine that do incredible things.  In fact, Sarah Reinertsen, an above the knee amputee and Iron Man, was running this same race!  She was more than likely already finished!!  I wasn't slowing down now!

I pushed through the remaining 1.2 miles, realizing that I was going to finish way earlier than 1:06!!  I began to panic a bit wondering if Mike was going to be there.  He wasn't expecting me yet and I wanted him to be there!  I needed him to be there!  I ran passed the band that was playing, heard the cheers from hundreds of people lining the street and made the final zigzag to the straight away for the finish line.  I scanned the crowd for Mike, but didn't see him yet.  The finish was getting close...where was he???  And then, like magic, I heard him yell my name and I looked up to see him holding the camera, waving his hand, and smiling his big smile.  He gave me a thumbs up and I knew he realized I had just smashed that PR!  Killed it, by nearly 11 full minutes!  Officially, I had finished the Bellin 10k in 1:03:52.  I had done it, and surprisingly enough, my "failing" body was still in tact.

We watched Renee as she sprinted across the finish line!  She looked strong and absolutely amazing!  Supporting Team SJS once again, she was wearing her team shirt.  I felt a lump forming in my throat and realized how proud I was of her and her incredible accomplishment and the gratitude that I had for her willingness to put that shirt on and run those miles in the name of friendship.  Yes, she did that race for herself, I know that, but she also did it for me.  I realized what an amazing friendship we have, and I'm holding that close to my heart forever.  So Renee reached her goals as well!  She finished that race in 1:19:19, beating her 1:20 mark.  She ran nearly the entire thing and, best of all, she didn't need ANY medical attention!!

So here's my question to you, the reader.  What is it in your life you really want?  Is there a fear that is holding you back?  If so, what is it?  No really, what is it?  And is that fear worth giving up what it is you are dreaming of?  Is it really?  I didn't think so.  So the next question is, is it in you?  I'll bet it is.

Yep, still running!!

An amazing things has happened because of this blog!!  In the past week, I have met 2 other SJS Survivors!!  One, of which, was just recently released from the same Burn Unit I was on in Milwaukee!!  We share the same doctor and favorite nurses!  Some people may say that it is not that amazing, but when it is perceived that you'll never meet another Survivor in your lifetime because it is "so rare" the fact that you live only hours apart makes it a little bit incredible!  He is doing well, by the way, other than the emotional part that goes along  with a trauma such as this.  The fear, the anger and disbelief we have all felt!!  And, rightfully so, if you ask  me! 

And then, to top it off, I did a little searching and found yet another Survivor who has her own blog!  What is truly incredible is that she is doing an Iron Man at the end of this month!  That's right, an Iron Man! 2.4 mile swim, 112 mile bike and a 26.2 mile run!!!  Unbelievable!!!!  Can't wait to actually talk with her and cheer for her all of the way from Wisconsin!  She's a few states away, but I can be  pretty loud!!!

I will let that carry me through Saturday's 10k.  Knowing that there are yet another two people who have fought the same illness and won will be on my mind for those 6.2 miles.  It'll be the longest race I have done since last November, and I hope the weather is as perfect as they say it is going to be.  No rain in the forecast and cooler temperatures than normal.  Yesterday, it was in the 90's and today we have a high of 66 degrees!!  My times have continued to drop and I am so much stronger than last year.  I am eating much differently and seeing some positive results in how I feel after long runs.  I haven't had one day that  has ended with hours on the couch or in the bathroom!  Now, that's a positive!!

I'll let you know how race day went!  And will keep you posted on the rest of training season.  I have taken all of my scheduled triathlons off of the calendar this year.  I am focusing on the run and I think that is a good decision for me at this point in time.  I'm seeing progress, so I'm going to keep working at it.  I am doing the Dirty Girl 5k in August, however!  My only fear is getting over that dang wall!!  I hope my teammates are ready to make a human pyramid so I can reach the top! That may need to happen!!

Happy running everyone!  See you at the finish! 

Just Breathe!

I am coming to the realization that this year's half marathon has become way more than running 13.1 miles!  So much has happened over the past few months and it has become a whirlwind of a life I lead!!  We have gone from 4 Survivors and their loyal supporters and fans to 9 Survivors coming from two different countries!!  We're getting corporate sponsors, doing fundraisers, like selling SJS bracelets and Stevie B's pizza buffet cards, I'm doing speeches and planning a pre-race dinner.  It has been amazing thus far!

But I have to say that the simplicity of training for the half last year is something that I continually long for as the weeks get closer to race day.  When I think back to last year, it was all about the excitement of running farther the following week than I did the previous week.  It was about going to a  place I had never gone before and the pride that came with that was staggering!  The only thing I could control was whether or not I put my shoes on and whether or not I pushed through when I felt like quitting.  I used my training runs to clear my mind and enjoy the solace of the moment.  I had a much easier time remembering where I had been a year before and honestly, amazed myself at times.  How far I had truly come!!

As exciting as this big adventure is this year and  how wonderful that we are doing great things in the name of awareness, love and support, I have set a new goal for myself this year.  My goal is to find a balance between last year and the ultimate goal of raising money for the Foundation and raising awareness of SJS.  I don't want to lose myself in the process of all of this.  I need to remember my favorite quote of all time!  "I am not what happened to me, I am what I choose to become." - Carl Jung 

So here's to another day of not getting lost, of taking the time for me to get my training in and to clearing my head!!!  Here's to being a vehicle to allow the healing process for Survivors and family members!!  Because ultimately that is the most important part of all of this.  Raising awareness is great and definitely necessary, but moving forward is inevitable and doing it with grace and dignity is the best thing we can do for ourselves.

The point?

I have been sitting here this morning, drinking my coffee, checking emails and Facebook posts, as I like to do every day trying to get the energy up to get on the treadmill and put a few miles in. The gloomy day has me feeling a little bummed out and wanting to sit all day in my bathrobe curled up on the couch, but in a few hours I have to get to the salon for another day.

As I'm reading everyone's Monday morning posts, most sounding a lot like mine: not wanting to get out of bed, not enough coffee in the world to get moving, tired of the crummy weather, and on and on, I come across yet another one of Jean McCawley's (founder of the Stevens Johnson Syndrome Foundation) desperate requests for prayers needed for another case of SJS. It's the third one in two days!! She asked for prayers for Giovanni, a 3 year old from Sacramento, an 18 month old from Boston and this latest, a woman from Tampa who is in critical condition. My mind races back to the snapshots in my head of my own experience, what I can remember anyway. It shakes me from the core and I am immediately filled with fear for those families and patients, knowing that they have no idea what just hit them!

The anger builds in my chest and the frustration grabs me by my soul! Angry that it is most likely these people were not warned of the possibility of SJS/TENs, that our government does not have a mandate that physicians report cases of SJS so that we have accurate numbers of people affected by it. Frustrated that I know there is a need so huge to get more information out there about this illness, that just because you survive the acute phase doesn't mean that you will not suffer in one way or another for the rest of your life, that I can't do more. At least, not right now.

I have found that I have a strong need and a desire to do something to help, but I don't know what and I don't have the resources to just start Foundation or Non-profit organization. And even if I did, what the hell would I focus on?? There's just so much to battle that it is all incredibly daunting.

So I sit and wonder, what is it that God spared me for? What is it that You want me to accomplish in this life? Did you keep me here for my husband and kids, as my husband truly believes, or is it for them and also for my fellow Survivors? Is it to get the word out about SJS? Is it to urge our government to make some changes? Am I supposed to aid in research by raising money? Or is it to help heal those who have suffered through my words, love and support? I don't know!! I can't hear what You are telling me and I am wasting time! Three more of Your children are suffering today. Dear God, why can't anyone hear those of us screaming from the rooftops?

Will I ever know what it is I am here for? Will anyone ever truly hear me? Dear God, I hope so.

Starting Over Again!

It's been a long time since I dared show my face on here!  First things first, I had to make a big decision regarding the half iron man!  And that decision was that I am not yet ready for a task as big as that one!!!  I hate to admit that, but it's true.  My body, mental status and life are not at a place that I can commit to something as intense as that!  Don't get me wrong, I loved training for it!  I enjoyed the first three weeks until the chlorine in the pool started wreaking havoc on my skin, and that was just the first sign that I am not ready.  I give so much more credit to those who are able to tackle such a feat!  I had no idea what really, truly went in to training for that, but I understand now and am all the more amazed!  So, I will be putting that off for a year or two.  When I'm ready, I'll know and enjoy it all that much more!!

So now, I am refocusing my energies on getting physically ready for the summer running season.  This winter was tough, and apparently the winter is not yet over!  The first 5k race of my season was this morning and we battled rain, sleet, snow, puddles the size of lakes, wind, thunder and lightning!  Yup, thunder and lightning!  Temperatures were near 38 degrees, but by the time we were done, I was sure my toes were rolling around on the inside of my water logged shoes!!  I can honestly say, it wasn't pretty!!!

So now, it's time again to pull back and just put in the miles.  Yesterday, I ran 3 miles and realized how much work I yet have to do before September.  It was a great run and I really enjoyed the process.  Controlling my breathing, paying attention to my form (which is all wrong, but at least I'm upright), and the enjoyment of knowing I only had to be responsible for myself for that 3 miles.  No kids, spouse, dog, dishes, laundry, cooking.  And that is what I enjoy the most about running anyway!  It's quiet!!

So here's to another fantastic season of outdoor running!!  Am just so hopeful that spring gets here soon!!  Happy running everyone!