Moving forward!

I have to say that earlier this week, I was very apprehensive about my scheduled 10 mile run today. My continued stomach and intestinal problems have weighed heavily on my mind and the question of if I should even attempt the half marathon popped into my head. It was kind of an ugly start to the week.

And then, without warning, I received a message from a friend of a friend who said that he wanted to help me if he could. I had already talked to dozens of people about my hydration issues and thought that it was probably going to be repetitive information of what had worked for him, what works for most runners, blah, blah, blah. All I could think of was that I was not like other runners and I had survived an illness he had probably never even heard of. Really, what could he do?

But then I thought about it and realized that I have a lot to learn and who am I to not even listen? So I sent him a message back and all of a sudden I felt a new sense of hope that this might actually be the thing that helps me conquer those 13.1 miles! Rob and I spoke over the phone, he lives in Hawaii and I am oh so jealous! He listened to my concerns, asked me tons of questions, told me he couldn't promise anything, but said he would do what he could to help get me ready for that looming race day in 4 weeks.

I learned that although I had lost 30 lbs during this process, my body was still adjusting to my new weight and probably functioning as though I hadn't lost it at all. Rob reiterated for me that my internal thermostat is still not functioning properly and overheating in our hot and humid Midwest summers is highly likely, which then leads to a large loss of fluids and electrolytes. He told me what foods to avoid three days before my long runs and those to avoid the night before. We talked about how to get hydrated and then how to keep it that way! As I listened and took notes, I realized how running is so much more than mapping my route and strapping on my old shoes! Sure, that had worked for me before, but it wasn't working for this old body anymore and not at these distances.

So I avoided dairy the rest of the night, ate a plain old chicken breast and a few green beans, drank Gatorade and water until I thought I would explode, felt a sense of pride when I peed the correct shade of clear, and then crawled into bed memorizing my route for the next morning. I woke up early and started the rest of my new pre-run regimen. I ate a quarter of a plain bagel with peanut butter and sipped some water, got my fuel belt ready and headed out the door.

The sun was out, but the temperature was cool and the humidity farely low. I knew it would gradually get warmer as my run progressed, but for the first few miles I wasn't bothered by it. I concentrated on my breathing, taking long strides instead of short ones and sipped at my gatorade every mile. After an hour of running, I decided to try a salt tablet and followed it up with water. As the blocks turned into miles I didn't feel the need to mentally segment my route, and I wasn't praying for the end to come. I felt strong and comfortable and I settled into what I was doing without a problem.

A half hour later, I took another salt tablet and pushed on to finish the last 3 miles. Hoping to finish with a 13:00 pace, I was amazed to see that I had done even better than that! I finished my 10 mile run feeling strong and better than I have felt in months in 2:02:41! I checked my watch twice to make sure I had read it correctly, and I had!! It was a GREAT feeling!

For the first time in a long time, I finally had some confidence in myself that I was going to be able to run this race. People may believe that my body isn't ready for this race, that I am overdoing it, that this is too much for a "beginner," that I need more time to heal and recover. But I will tell you that in my heart and soul, I know that I can do this and I can do it well. I am ready! I am a mother, a wife, a friend, a daughter, an advocate, a counselor, a fighter, and a survivor. Maybe I am starting from a place that most have not had to start from, with atrophied muscles and nerve damaged feet. Maybe I do have sight in only one eye and skin that is scarred and damaged. But I have something that not everyone has, and that's the belief in myself that I am worth the time, the energy, the effort and the discomfort to reach a goal. And now I know that I am yet another label to add to my laundry list; a runner. Yep, I am a runner!

Two Steps Forward, One Step Back

Mike and I ran the Menasha Otto Grunski 10k this morning. I had never run a race longer than a 5k before, so I had been looking forward to giving this one a whirl. The weather was pretty good at the start with cloudy skies and a tad lower temperature than we've had for several weeks, however, the humidity was still pretty high.

As you probably know from previous posts, I have had weeks of intestinal issues on my longer or more intense training runs. I have tried everything I can think of to eat and drink the right things in order to make that problem go away. I have been sick for afternoons as well as for the entire next day. It has been not only frustrating, but has taken a chunk out of my self-confidence. It seems all I do now is dread the long runs and question my ability to do the 13.1 miles.

Today's run was no different, unfortunately. I spent my entire day yesterday avoiding dairy, measuring ounces of water, and running to the bathroom hoping my bladder wouldn't burst. I got up early this morning and drank even more water and ate half a bagel with peanut butter. Thinking that all of these things would make a difference in today's run. It did, I guess, until well into the third mile when I started feeling a little nauseated. Halfway through mile 4, my bladder had decided it had had enough. And let me tell you, trying to find a wooded area in town while being followed by other runners and walkers is quite the feat (notice I didn't admit to how many runners and walkers were behind me)!

So, although I finished the race and did so at approximately the time I had hoped to finish it, I have spent the rest of my day on the couch or in the bathroom. And I must say that I am happy with the remodeling job Mike and I did in that room approximately 4 years ago! Like I said, I've spent a lot of time in that room over the past several weeks.

So I guess the thing that I am learning through all of this is that I must have patience for this too. My recovery from SJS has been a test of that patience for the past two years. Whether it be the healing of my skin, yet another surgery, waiting in doctor's offices for hours, traveling across the country in order to see better, or just the time it has taken me to realize that I have actually fought this battle and won, it has all taken patience. A virtue I have not been accused of having...ever.

I am pretty emotional about the run. I get nervous when I remember that it's only 35 days from today. I get jittery when I think about whether or not I can go the distance. And I dread the thought that I will finish 13.1 miles and then be unable to enjoy the high from doing so because I will be all alone in the watercloset! Not exactly my idea of a celebration for the months of training and the sheer number of people we made wonder "What the hell is SJS, anyway?"

I guess we will see what happens the morning of September 19th. Time to reevaluate my goals for that day. Is it really all about running the half marathon or is it celebrating life with my fellow SJS peeps going the extra mile with me? Or the thousands of people that we may bring to light on the subject? The possible lives we may save or affect that day? Sometimes I think it's good to take that one step back!

Point of no return!

Sunday was my first scheduled 10 mile run. I was camping with my family and some friends for the weekend and knew that I would be running in unknown territory, but it was beautiful! We were out in the country, mostly old county highways and gravel roads. Mike was with me and there for the encouragement as well as my pack mule and GPS! Loaded with water, gatorade and a large feeling of doubt churning deep down in my gut, we headed out for the hardest run thus far.

It was hot! Not sure how hot, but the humidity made it harder for me to breathe. I was having problems with my lungs and coughed a lot. Usually producing phlem I just couldn't get rid of. Frustrating! But we continued on and ran between cornfields and soy beans and were grateful for a light wind that cooled us as we went.

As the miles went by, I asked Mike to tell me how he got through all of his years of training for the two marathons, numerous half marathons and the MC 200 that he has completed. I've always admired his strength and endurance to get out there and run mile after mile after mile. He's always made it look easy! However, I was learning that even for Mike, it wasn't always so easy. He reminded me of some of the long runs that just didn't go his way and the injuries he had to nurse in order to push forward. He admitted that he had his tough runs as well, but never doubted that he would finish the even he was training for. It was always about how he finished. Whether he sprinted, jogged, walked or crawled, he would finish and that was all that mattered. It was good to hear that!!

As we continued on, I would have moments of panic that would over take me. I'd get angry and frustrated at how hard it was and declared that I wasn't going to be able to do it! I didn't need to run this half marathon anyway, I could walk it. What was the point? Why would I push my body this hard and I was going to be sick for the rest of the day anyway! Was it even worth it? Of course, that flew like a fart in church with my husband!! Of course I could do it ,even more so, of course it was worth it.

I began to realize how scared I really was to do this thing! Would my body be able to take it? Was I getting sick after my long runs because my body was sub-par? Did I really have the strength that everyone has been saying I have? Would I fail?! Would I train for 9 months to just get to the point that it just wasn't going to happen for me? And the bottom line-Was I just going to live until I got sick again and die this time?

You're mind can play some pretty nasty tricks on you after you have been through a serious traumatic experience. And my mind was doing just that. It has been a bit of a struggle for me to push past my irrational fears and to keep going when at times all I have wanted to do was quit. I could have quit. Easily, could have said that I was not going to run it after I made the decision to do so. I could walk it and have the same result, no biggie! I still would have completed 13.1 miles, still would have gotten the word out to people with the help from the rest of my SJS Team. It would be fine to do it that way.

Fine for other people maybe, but not me. And Mike was quick to point that out! He told me to "knock it off" and "quit telling yourself you can't do it and just do it." I would never be ok with determining to run it and then not doing it to the best of my ability. What would that say about me? What would that say about the incredible people I share the title of "Survivor" with? It's just not an option. Quitting is just not an option and being afraid is not a good enough excuse to not give it all I've got. That's all there is to it!

We ran some more, and then ran some more. I was pretty sure we were never going to make it back to the campground! We were nearly out of water and what we had was so warm it was gross! The gatorade had been gone for awhile and I was glad since it too had gotten warm. Mike pointed out that we were at our last mile and that it wasn't far now. I felt my legs moving and my feet pounding the pavement, but felt nothing else. I could no longer speak but answered Mike's questions with a grunt to let him know I was listening. My insides were cramping and all I wanted was a bathroom and a cold shower! I thought I was going to collapse on that final 1/2 mile, but I kept my feet going. I found a little bit of energy from somewhere down in my soul and finished those 10 miles.

So I did it! And, yes, I was sick for the rest of the day. I still have not figured out how to prevent that from happening, but I'm not quitting. I have 6 more weeks until the race and need to run at least one 10, 11 and 12 mile run. So I'm taking it a little easier this week and am doing a 10k on Saturday. For this week, that will be my longest run and for me that's ok! I'm focusing on controlling those irrational fears and allowing them their place, but not letting their place take over mine. It may not be a really strong and wonderful finish, but yet it might be. It still comes down to putting one foot in front of the other, no matter how I look at it. So that's what I'm going to do! In my training, in the race and in my everyday life. Because surviving is more than just being present, it's all about moving forward. And I'm moving on!

For my husband...

I have been wanting to find a way to thank my husband, Mike, and to let people know just what he has done for this family and for me over the past two years. However, it's been a challenge since the focus has been on me for so long. When people go through times like we have, it's not unusual for family and friends to think of the "patient" first. And although I truly appreciate the thoughts, prayers, and kind words of love and support, I want you all to know how incredible he really is!

I still have not been able to figure out exactly how he kept our family functioning during the 3 months I was in the hospital. I know he had a calendar and scheduled days for people to come and stay with me at the hospital so that I wasn't alone. I know that he was there himself for several days out of the week and drove back and forth from home to Milwaukee. He stayed with numerous friends overnight each week so that he could be at the hospital as much as possible, and he kept everyone in the loop through a beautiful Caringbridge site that he updated nearly every day.

Mike would go to work a few days during the week and would take care of our two boys' every need. He's told me that night time, after the kids were asleep, was the hardest and loneliest time for him. I can't imagine lying in our bed alone wondering if my spouse was going to make it through another night, if the phone was going to ring and the call be from the hospital with devastating news. How does someone survive that?

Well, he did. And he did so with true grace and determination. If ever there were a man that walked this earth with more strength, courage, generosity and love I have never known one. And that has continued through this entire journey we have traveled together.

After he brought me home, he took care of every little detail. Setting up doctors appointments, physical therapy sessions, eye appointments, picking up prescription after prescription, cooking, cleaning, bathing the kids and putting them to bed, helping to get me showered and dressed for the day, going to work, paying the bills and constantly worrying if it was all going to work out! Once I was strong enough to start doing some things on my own, we had to learn how to be husband and wife again instead of caregiver and patient. There's a big difference and it was a difficult transition for awhile. Yet his patience and love was unending and he pushed me forward to do things on my own. He supported me in my decision to run the Fox Cities 5k last fall and was there at the finish line to catch me in case I needed him to. I am proud to say that although it took me 40 minutes and 57 seconds to run those 3.1 miles, I was standing on my own two feet at the end.

And he is supporting me and encouraging me through yet another goal. This half marathon is not about me. It is, of course, about raising awareness of this illness. At least, that is what it is about for all of those people who have signed up to run or walk it, have ordered shirts and who have encouraged me through Face Book posts and spreading the newspaper article link all over the internet. But honestly, on the day of the race, I will be running next to the man who has been there for me when I knew something was terrribly wrong that first terrifying night, who was there when the doctors said I had to be transferred to another hospital with a burn unit, when I couldn't breathe on my own and and my body was giving up, when I couldn't dress myself and he had to do it, when the panic attacks were so bad I thought I was having a heart attack, when I had no hair and he still thought I was beautiful, and when I told him the crazy idea I had to run 13.1 miles. I will be running it for him. So that he knows that I am who I am and as strong as I am because of him! He has carried me through more than any person should have to carry anyone, and he saves my life every single day.

Michael, I can't know how much you have really given up for me and our family. I can't imagine what this process has done to you, but I do know that I am eternally grateful to you for your love, support, encouragement and strength. You have been my rock, my training partner, my cheering section, my coach, my best friend and the love of my life. Thank you for helping me, thank you for taking care of me, thank you for supporting me, thank you for loving me and thank you for beating this illness with me! We did it, Baby! We did it!!!