Members of Team SJS just minutes before the start of the 2010 Fox Cities Half Marathon!

Tuesday, June 29, 2010

Yet another training run and an anniversary I'd love to someday forget!

So it was the day after my big triathlon and I was scheduled to run 6 miles. I can honestly say that rolling over in bed and pulling the covers over my head was what I really wanted to do!! But somehow, I was able to pull my sore and achy body out of my bed and make my way to the kitchen where I start each and every day by putting my "eyes" in.

It's really not a difficult process, but it is tedious and some days it just gets old. I have to remove my right lens from the cleaner, rinse it, put it on the plunger, fill it with Celluvisc, top it with preservative free saline that has to be refrigerated and then stick it to my eye. Ok, one down. Then I have to take my prosthetic out of the case, put it on the plunger, stick it to my eye and then cover the outside with vaseline so I am able to blink. If the vaseline is too thick, I have to put artificial tears in right away and then I seem to be ok. And then of course, I have to reverse the process at night and include all of the cleaning that goes with it. And I must remember to sober up some if I've been drinking so I can do this without hurting myself or breaking anything!

I knew that although I was sore froom the day before, that I was lucky enough to have a friend who wanted to run with me. Kelli had been a sprinter back in the day and told me she had never run that far before. She could run fast, that I knew, but I thought for sure that if I could do this, she sure as heck could too! It wasn't long before she knocked on the door and we were on our way!

I don't recall paying much attention to the actual running itself. Just ask Kelli; my mouth was running a mile a minute!! Wouldn't shut up!! Couldn't, actually. I was so excited that she was willing to take on this crazy dream to run the half marathon that I was bubbling over with gratitude. We talked about everything from hair (we're both stylists), to running issues, to our men's motorcycles, to SJS, to training schedules. It wasn't long before we were on the home stretch and i couldn't believe how the time had flown by. It was absolutely amazing!! I think I experienced a true runner's high! kelli knocked those 6 miles out of the park and I was truly proud of her accomplishment. It isn't easy by any means and not everyone can do it! But we did! And we did it well!

Today, June 29th, is the 2 year anniversary of the onset of my Stevens Johnson Syndrome. I started the day out with a 3 mile run and what a beautiful day it is today. Sunny, not too warm. The weather guy called it "fall-like" and I think I might have to agree with him on that. I am notably far less stressed and anxious this year than I was last. I think I'm ready to just keep moving forward and not look back. The running has brought so much comfort and relief to me over the past 6 months. I am so grateful that I have that. That I am able to do it, even if it is slower than what I would really like it to be.

I may not always be this stable. I may have future problems with my eyes that only time will tell me, but for now I am comfortable. I am happy with my life and where I see parts of it going. The important parts, anyway.

So here's to my fellow SJS peeps on this beautiful summer day. A toast to your determination, and your fighting spirits - to your devotion to spare others from our nightmare!
May the road rise to meet you,
may the wind be always at your back,
may the sun shine warm upon your face,
the rain fall soft upon your fields,
and until we meet again
may God hold you in the palm of His hand.

Saturday, June 26, 2010

Triathlon Day

Well, today was a big day!! I completed my first triathlon in 4 years and since getting sick. My original goal was to finish and finish strong, and I think that's exactly what I did!

The weather last night was stormy and I was a little concerned about the weather forecast for today, but it held up fine for the entire event. It started out a little dark and cloudy, but the sun came out just in time to start the swim; which was in a man-made pond that was warm as bath water! Ok, maybe not quite that warm. It was a 400 yard swim and honestly I haven't been in the water to do any type of training in over a year. Being a swimmer in high school and always feeling like it was my strongest event, I wasn't nervous about it at all. When the horn blew for Wave 4, I ran into the lake and dove forward, hoping and praying my goggles would stay in place! I wasn't worried about the swim, but I was worried about my eyes!

As I pulled my way through the water, I noticed the lack of vision in my left eye. I don't really notice it normally, but I did during the swim today. It was a bit awkward and I was conscious of it for the entire distance. I pushed on and and finished the swim feeling good.

Running to transition from swim to bike, I felt the pain in my foot from my toe. I had to run on sand and then grass and the ground was very uneven. I made it to transition, threw on my shoes and helmet and grabbed my bike. Luckily, the foot felt fine on the bike and I didn't think about my toe again until the run. Now, the bike! What do I say other than I plain ol' stink at it! The bike has always been my toughest event, which is kind of unusual for a triathlete. I just don't have the power in my legs that I need! So I chugged along while people continuously passed alongside of me. I felt a little frustration building, but focused on the odometer reading instead. The course was fairly flat, only a couple of notable hills, and surrounded by farm country. It really was a beautiful ride and for most of it I was all by myself. Pretty much bringing up the rear, accept for the two bikers I happened to pass! As I watched the miles getting closer to 15 on the odometer, I realized that I was still quite a ways out of town and only a few miles left until 15. What the heck? I was reassured that I hadn't taken a wrong turn by the orange cones along the road, but thought for sure something was off. Well, by the time I reached transition 2, my odometer read 24.5 miles! Ok, something was definitely wrong with my dang odometer!!! Uh, frustration continued!!!

So it was bike to run and I had to get my legs under me. There's no other way to describe the feeling of getting offf of your bike and breaking into a run other than your legs feel like wet noodles! That and you feel as though you are running in place since you aren't moving any faster than a snail's pace! As I trotted along, I saw my best friend running towards me. She had already nearly completed the run and I had just started! She kicked my ass today, but encouraged me to keep going as we passed. I noticed the pain in my foot, but by this time, I was so numb that it didn't much matter.

I just kept on, wanting to walk but not giving in to that feeling. I knew that eventually my legs would loosen up and the run would somehow get easier, and it did. People were encouraging me, saying I was looking good and that the turn around wasn't much farther. It was hot and humid as the sun beat down on us and it was all mind over matter at this point.

Within the last half mile, a young woman came upon me and began running next to me. I decided to try to just keep up with her and run alongside so that I had some sort of a pace. She looked much stronger than I was feeling and I'm glad I did just that. Her name was Micky and this was her first triathlon. She was from Milwaukee and we laughed about how she went to school in Oshkosh while I went to school outside of Milwaukee. Small world, we thought. I told her it had been four years since my last tri and we talked about my past experiences with the sport. I told her about having to start over with my training and how that all happened, the SJS story in an abbreviated version. Her response to me was very supportive and we ran the last bit together until she was met up with a friend and I told her to sprint it out!!! And they did!

The finish line was a few yards ahead of me and I could hear my husband cheering, my friend yelling encouragements and could see my dad taking pictures. It all began to hit me as I took those last steps; I had just completed a triathlon! I had conquered yet another fear - swimming with my prosthetic. I had taken back another of my old life's passions and it felt just as good today as it did four years ago. That uncontrollable smile came over my face yet again; making me feel incredibly stupid! But I was proud! Proud of my accomplishment. I had done it; and I had done it for me. It was an incredible day, an incredible accomplishment, an incredible feeling! Yet another step forward.

Wednesday, June 23, 2010

Taking the Plunge!

Ok, so here's the deal! Saturday is the Mighty Wolf Triathlon in Winneconne, WI. It's a super sprint and I've done it one other time - back in 2006. It was the last triathlon I participated in and I have decided to give it another try! Since I conquered my fear of getting on my bike and I know I can ride 15 miles, why not?

Like I said, it's a super sprint - 400 yd swim, 15 mile bike, and 3 mile run. So it isn't anything that is standing out in my mind as completely overwhelming! Besides, triathlons are my first love! Running is great, but splitting it up with two other events just adds so much more excitement for me. I can't wait!!

However, having said all of that, I am a little concerned. With my left eye covered by a $5,000 shell and my right eye with a $600 lens, I hope my goggles hold up!! Can't imagine losing either of them in the bottom of a damn pond! And then, my toe is still not right. It isn't healing, although the discoloration is gone. Every time I step down wearing my running shoes, a shot of pain radiates through the bottom of my right foot. Ugh!! I swear, it's always something!

Although I am a little more anxious than I would have been had I not gotten sick and had to deal with these little annoyances, I still feel confident that I can do this! My heart flutters uncontrollably every time I take back a piece of my old life!

I always thought that people who claimed they were not "disabled", but "differently abled" were just stuck on symantics. That there were better things to do in this world than nit-pick at words, labels, definitions, etc. However, I can now say that I get it! I GET IT!!! It makes sense to me! Because I am going to do this triathlon, just like the other athletes who will be standing on the beach with me in their swim/tri suits, caps, bib numbers and spitting in their goggles to prevent them from steaming up, and I am going to finish. I will just be doing it "differently!" I will be swimming with one usable eye. I will be biking with a mirror on my left side to see those who will most likely be passing me by, I will be stopping along the way to add artificial tears to my eyes so that I can blink, and I will be running with a broken toe! A toe that breaks often due to atrophy and nerve damage and constant pain. But I will swim it, I will bike it, I will run it, and I will finish it just like everyone else; with one foot in front of the other!

Tuesday, June 22, 2010

The Climb

Sunday was my first scheduled 6 mile route. I was a little surprised at how relaxed I felt since I had pretty much freaked out at the thought of 5 miles! But I was ready on Sunday. Ready to take my time, ready to walk if necessary and ready to just do it so that it was under my belt.

There's a song my husband downloaded for me onto my ipod the night before so that I had it with me if I felt things got tough along the way. A song that has kind of become my theme song since getting sick. It really fits in anywhere along my route to recovery. The little things I would accomplish in the hospital like being able to roll myself over and hold onto the bedrail while the nurses changed my dressings, or the morning I got my feeding tube removed because I had shown them I was able to consume enough calories on my own. Walking the full length of the burn unit with my walker without sitting down to rest, putting on real clothes instead of a hospital gown for the last several days on the unit, and conquering the steps in physical therapy so that I could finally leave the hospital and get back to my life.

I can almost see it
this dream I'm dreaming,
but there's a voice inside my head saying
"You'll never reach it!"

Then it fits with the continuation of physical therapy 3 times a week for 4 months after my release and all of the inredible things I did there. Graduating from a wheelchair and walker to a cane and then eventually letting go of that too. Walking on the treadmill without losing my balance and then jumping one footed on a trampoline. And now it fits with this dream and goal of running my first half marathon.

Every step I'm taking
every move I make
feels lost with no direction
my Faith is shaking

But I gotta keep trying
Gotta keep my head held high

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb...

I started my run and hit the play button. Miley's voice belting through my headphones, I couldn't help but look straight ahead at the road in front of me and break into a smile. I felt so stupid! I just couldn't stop smiling! Why in the hell am I smiling?

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking

I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going

And I, I got to be strong
Just keep pushing on...

And somewhere around mile 4, with two miles to go, it finally hit me! I was smiling because I could - could wake up every morning, could watch my children grow, could love my husband, could make our house a home, could go to work and love every moment of it, could call my friends on the phone or have lunch with them, could dream big again, and I could run! Run outside on the pavement like I used to and it didn't feel like running on loose sand. I didn't have to run on a treadmill anymore because I didn't have the strength to run anywhere else or because I was afraid of falling, or I was afraid of my eyes drying out and the pain that came with that, or the bright light from the sun. I could just put on my shoes and shades and run.

As I rounded the corner to our house, with the first 6 mile run I had EVER accomplished behind me, I realized how far I had actually come. Not how much farther I had to go, but the distance I had covered from the beginning of my new life to now. That's how I see it, anyway. My 3 months in the hospital were not about cheating death, but about the opportunity to live my life in a new way. To see the litttle things people talk about, but never truly understand. You hear talk about appreciating life and the things we all take for granted, but nobody ever really grasps that until it's forced upon them. And I'm no different. But I can now say that I do see things differently and in a new light. And as I see it...

There's always gonna be another mountain
I'm always gonna wanna make it move
always gonna be an uphill battle
sometimes I'm gonna have to lose

Ain't about how fast I get there
ain't about what's waiting on the other side
It's the climb - keep moving, keep climbing, keep the faith, keep your faith
It's all about, it's all about the climb!

Thanks, Miley!

Sunday, June 13, 2010

You're kidding, right?

It's been a disappointing week for training! Although we were away on a nice family vacation, I only got one run in. I ran 3 miles on the treadmill on Monday and then on Wednesday, sprained or broke my pinky toe so bad I couldn't wear a shoe. No running for me in flip flops! I have very little movement in my toes, which makes them stiff and very brittle. There's been so much nerve damage and atrophy that I can very easily injur them. In fact, this is the second time in three months that this has happened.

So now it's Saturday. Last night I got a shoe on and ran 2 miles on the treadmill, but I struggled with that. I just can't seem to step down on that foot! And, on top of that frustration, I am scheduled to run my long run today. 5 miles. It's the last one scheduled until I bop up to 6 miles next week. Honestly, I'm feeling pretty down today!

I try to remain as positive as possible all of the time, at least in front of other people. But I have to say that today is not one of my good days. I'm watching the event ticker count down the days and am worried that I'm NEVER going to be ready in time! Seriously? What the hell am I thinking? What is it in my little brain that has made me think that I can do this? I've never run that far, even before the SJS! What makes me think that my tired, weak and "old" body can take this? Uh, I just don't know. Today, I just don't know.

Tuesday, June 8, 2010

Summer Vacation!

Wow! I am a few days behind!!! I should tell you that the doctor's appointment went as I thought it would. I was told there wasn't anything she could do for me and that I needed to see a dermatologist. Really? Isn't that what I said in the first place? Seriously!

So anyway, I have my appointment with the dermatologist on June 29th, and until then I am going to just remain as calm as possible! Nothing I can do about it right now, and even if there is something wrong, it's out of my hands for now.

It's day #4 of our family vacation here in Wisconsin Dells. We're staying at a nice resort and keeping the kids busy while having some down time in the evening for myself and my husband. The weather today, however, is lousy and we're sitting in a McDonald's utilizing their free Wifi trying to answer emails from the office, from home and , of course, checking Face Book!! Too damn cheap to pay $7 a day to be in my computer!! Crazy!!!!

My training has continued even though I am on vacation! I ran 5 miles before leaving town on Saturday, 3 miles on the treadmill yesterday and plan to do 3.5 tomorrow. I was so proud of my run on Saturday. I whittled a little time off of last week's long run and never had to walk! I felt pretty strong throughout the entire thing and was relieved! Of course, yesterday was different. My 3 miles on the dreadmill were killer and I couldn't wait for it to be over! I thought for sure it would be so much easier, but I missed the changing scenery and the feel of the breeze. The only changing scenery in the fitness room was people coming in and out to check out the facility, knowing full well they would never step in that room again during their one week vacation, and the only breeze came from a box fan carefully positioned on top of the elyptical machine that looked as though it hadn't been used...ever! Why are hotel/resort fitness centers so unwelcoming? Like the silver and grey machines are there laughing at you! Like you're not a real athlete if you are using them on vacation! What? Don't real athletes ever take a break from the realities of the world?

So, here's some cool news for you!! Before we left town, I was asked by the Fox Cities Marathon to sing the National Anthem before the Kids Fun Run at the Fox Cities Stadium on Friday, September 17th! I was honored to sing our Nation's Anthem last year before the full marathon, so getting to do it again will be great! I'm looking forward to being a part of this awesome event!!

I am hoping everyone is enjoying the first week of the kids being on summer vacation! I, for one, am about ready to send them back! Don't get me wrong, we have had some great moments on our vacation, but my moody 5 year old is driving me crazy! One minute he is fine, the next he is crabby as all get out!! As he is right about now! Maybe a run in the rain tonight will do me some good!!!! Or maybe a short stint in the outdoor hot tub where no children under the age of 16 are allowed! Yeah, that sounds good!!!

Wednesday, June 2, 2010

The scare?

I called and set up an appointment with my doctor today. Not really a big deal, usually. But I think I might have something to be worried about. Ok, not really worried about it yet other than worried that I might have to worry about it... eventually.

I've read on several websites that SJS survivors need to be monitored for skin disorders or cancer. I've never thought much about the few little spots I have that are a now, to me, a little questionable. I just chalked it up to the fact that I lost my skin and now it's back. Although it's scarred, bumpy and discolored. However, I have about 3 areas that are kinda weird looking. Not like a weird shaped mole or something like that, just areas that haven't healed or were healing at one time, stopped and are now getting bigger. What the hell?

Seriously? I nearly die from losing my skin and now it grows back only to scare the shit out of me that I may die again! What am I? A cat? Ah!!!!

I know, it's probably nothing and it's good that I'm getting it all checked out today. The doctor may biopsy it and have me wait for the results to come back. During which time my mind will race, jump to conclusions, and basically freak me out! Great! Can't wait for that!

So what the heck is a girl supposed to do in this situation? Be strong, don't freak out, just wait and see, blah, blah, blah! Ok, no problem. Will do! And tomorrow, after this appointment is over and I'm waiting to hear something from the doctor... I'm going to run. Run 3 1/2 miles like I'm scheduled to do. With my awesome New Balance running shoes, my wrap around shades, my ipod and my artificial tears in hand. I'm gonna run. And the next day, I'm going to run again. I'm going to run until I can't anymore and I'm going to love every minute of it, because I can. I'm going to enjoy it because I can.

Tuesday, June 1, 2010

A Little About SJS

This picture was taken about 2 days prior to me getting sick.

So I thought I should tell you a little bit about this Stevens Johnson Syndrome. Well, it's like this - it's and adverse drug reaction (most often times) and it effects the mucous membranes of your body as well as the top layers of your skin. Now I don't have a medical background and do no claim to be anything that I'm not. This is all about my experience! Got it?

It all started for me after I was on a medication for 16 days. I was taking it because I had been fighting depression and my doctor thought this would help. My husband and I were at a local Country Music Festival camping with our friends and having the time of our lives. The short of it is that I started to find a red rash on different parts of my body. I went to see a doctor who thought Benadryl and rest would help. That the reaction would just take time to work it's way through. Within 24 hours, I was admitted to the hospital with blisters over most of my body.

I was eventually moved to a burn unit, where I stayed for approximately three months. The process of SJS is almost like a second degree burn from the inside out. My blisters filled with fluid, they spread over 95% of my body and the skin began to slough off of my body. I was intebated twice, had a feeding tube for nutrients because I could not eat or drink. The lining of my lungs, esophagus and mouth began shedding as well. The doctors prepared my family for the worst, but remained optimistic.

The biggest fears were infection, organ failure and pneumonia. You see, when your body has no way to protect itself from the outside world, it is likely that infection will kill you. As it turned out, all three of these things happened to me! I had sepsis, which they treated me for with antibiotics. Once they had that under control I started to make a change for the better. They were able to keep me awake for longer periods of time and even get me up and around. However, the fluid in my lungs began to cause problems and I developed pneumonia. After that spell, my kidneys began shutting down and I gained 65 lbs. of water weight. The medication they were trying to use to take the weight off wasn't working, so they hooked me up to dialysis to pull the water off a drop at a time.
I know these pictures are pretty graphic, and I'm sorry about that. I don't want to freak my readers out, and I know some of you have seen them. But for those of you who haven't, this is reality!

I went into the hospital in the early morning hours of June 29, 2008 and came home in the late afternoon of September 16, 2008. I had seen my boys only once during that time and I am happy to report that even though I had a trache, and I was still bandaged, I remember seeing them! I was so happy! The pig skin they used to stimulate my skin growth worked and I can say that now have a full body of skin!!!! The weight eventually all came off, and then some, but I was going to live through this!!

When my husband drove us home from Milwaukee, my yard was covered with Welcome Home signs! I had never been so glad to see my sweet little house!

The road to recovery has been a very long one and things have come up since then that I have had to deal with. The worst of which are my eyes. I no longer make tears on my own! I have to use artificial tears and the vision in my left eye is nearly gone. I can see shapes and colors, but that is all. I now wear a prosthetic over that eye to keep the light out of it because it is so sensitive. I wear a sclera lens in my right eye which keeps fluid on the eye all of the time and I am able to see 20/20 out of that one. I am so grateful. I have had two surgeries since coming home and there may be more down the line. But that is not unusual for those of us who have survived this rare disease. A disease that can happen to anyone at anytime. They told me it was a 1 in a million chance, but now it is being reported that it is somewhere between 2-6 out of every million. It's still rare, only about 300 cases in the US every year. But through the Internet, i have met so many!! People who are now my friends that I may never meet in person, but know the struggles I face every day.

I hope this hasn't scared you, just made you aware of it. There is information out there for you if you want to learn more. I hope that you will take the time to look it up, read your own medication bottles and those of the ones you love. Take into consideration the love and joy you have each and every day in the little things. Together, we can spread the word and make some noise so that others may be spared! And don't forget to keep putting one foot in front of the other! That's what I'm going to do! I've got 3 miles to put in yet today!!