Tuesday, July 30, 2013

Race Report: Wigs 4 Kids 5k

This past weekend my mom was out visiting, and we decided to run a 5k at the Cleveland Zoo. I LOVE the zoo, so I thought it would be fun to run through the zoo and then have time after the race to walk around and see the animals and the exhibits. Unfortunately rain put a damper on our plans, but we still had fun!

It's about an hour to get to Cleveland, but the race wasn't until 8:30 so it wasn't *too* early of a morning. =P I had asked a friend if they had been to the Cleveland Zoo to try to get a feel for the how hilly it would be. He told me that it was rolling hills, but nothing to bad, so my mom and I figured it could be a good time...

Yeah, not bad...right when we made the turn onto Wildlife Way, I knew we were in trouble. It was a HUGE downhill to the entrance to the zoo. I was still holding out hope that maybe it just meant the whole zoo was in a valley and we wouldn't have to go up that hill...no such luck...

As icing on the cake, as soon as we parked the car, even before we got out, it started raining. Not pouring or anything, but nice and steady. It was going to be a good day...haha, but seriously, it was!

We picked up our packets and went for a warm up jog around the zoo. That was fun because we ran through some areas that were not on the course. We ended up not hanging around after the race because we were cold and wet (and it was still raining) so seeing pretty much the whole zoo during our warm up was nice. We also got to see the course...the very hilly course...

The first part wasn't too bad, up through Mile 1 - after that, there was a very, VERY steep uphill that was probably a bit more than a quarter mile long. Once we reached the top, the course turned and followed a wooden boardwalk through the monkey enclosures. Just what we wanted to see - wet, slippery wood that had lots of turns. After the warm up we were very confident that it was NOT going to be a fast day, but at least it would be fun!

It seemed to take FOREVER for the start. They did some jazzercise/step aerobics warm up before that took a while. When we finally lined up, I felt ready, but nervous. I don't think it matters how many races I will run or how little I care about my time, I will always be nervous before a race.

I had not done any speed work since...I can't even remember, and hadn't really been "training" so I knew my time wasn't going to be that fast. I've also been getting better at judging how I'm feeling and allowing that to dictate how hard I push races and just the day to day exercise. I was feeling pretty good that day, but I also know that it takes me a while to recover from a hard effort and didn't want to push it too far. I've finally gotten to a point where I'm more or less healthy for me and I want to keep it that way. Even if that means I can't "race" like I used to, it is so nice to not have to worry about stomach pain with every meal or passing out on a regular basis.

So I planned to just start easy and run by feel. I wanted it to feel challenging but not an all out effort. I wanted to run the first bit in such a way that by Mile 3 I was still feeling okay. It worked! Once the race started I was up with a pack of runners just behind the lead group. I felt like the pace was hard but sustainable which was good. It was controlled but working. I had purposefully not worn a watch because I didn't want to be distracted or get anxious about my time, but there were volunteers at each mile marker shouting out the time - NOT GOOD!

I hit the first mile marker at 6:42. My first reaction was to freak out! It was too fast, I hadn't trained, I was going to crash before the finish, my mind started running. But I didn't let myself get into my head. I told myself I was running by feel and if I was feeling 6:42, then I was feeling 6:42 and that was OKAY! It took about half a mile, but by the time I hit the monster hill, I felt like I was back into control of my running and not freaking out over the time.

As much as I'm not a fan of hills in races, I do run them well and I consistently find myself passing people on the hills. On this course it definitely worked in my favor. I passed A LOT of people on the big hill. I took it pretty slow on the wooden boardwalk because I really didn't want to fall. I don't run down hills as well, but I did alright on this one, actually catching 3 people on the downhill. Mile 2 was right at the bottom of the hill, and as I was coming up I could hear the volunteer shouting out the time but couldn't make out what she said. When I got close I shouted "I don't want to know!" and she laughed. It helped me relax, NOT knowing my time at that point, so I could focus on the last mile.

I was still feeling pretty good, so I started to push a bit harder because I knew the hard part was done. There was a solid downhill right before the last mile marker, and I started to catch a boy who was in high school. As I came up next to him, I told him "Don't let me beat you!" He matched my pace for a few steps and then started to pull ahead. I stayed with him for a bit, but we hit the last mile marker and both started to sprint in to the finish. I saw the clocks when we came around the corner and it had just turned to 21:00. The high school boy beat me by a few seconds (yay! I congratulated him after the race), but I still crossed the line 2 seconds ahead of my PR! On a ridiculously hilly course with no speed work, I set a new PR =) =) =)

21:16, 6:52 pace

My mom didn't PR, but she wasn't far off her time either. She finished 2nd in her age group and I was 3rd. Overall, it was a good race. I had a blast running through the zoo and was happy with my results. It has also shown me that I can be stronger than I think by taking care of myself and keeping my priorities straight. Instead of focusing on racing and beating my PRs, my focus is on keeping myself healthy. Thankfully, right now running, biking, and swimming fit into that equation, but it is more about having fun than putting the pressure on myself to perform!

Monday, July 22, 2013

Weird Reactions

The past few...I'm not even really sure how long they been coming and going, actually...but anyway, I've been getting random rashes/hives/itching/flushing. Sometimes it seems like I can pinpoint what is the trigger, like a new lotion or cleaner. A lot of the time, though, it will come out of no where, or be at a random time.

Just last week I was in the middle of running an exercise program and started getting really flushed and got a weird blotchy rash. It was practically 600 degrees in the gym where we were, but I put on a long sleeve shirt just so no one would ask. It didn't really work because wearing a long sleeve shirt when it's a gazillion degrees is weird enough, but at least I could pass of the flushing as being hot!

I have an appointment to see and allergist/immunologist who is supposedly familiar with Mast Cell Activation Syndrome. This was something I had heard about a few months ago that seemed to be a very good explanation for a lot of my symptoms. At the conference I wrote about in an earlier post, a few of the doctors also mentioned MCAS and recommended I see a specialist after I told them my symptoms. So it's off to more doctors! Yay...

At least now I'm not feeling as sick as I was a few months ago. Even with these continued symptoms I'm at least able to keep functioning for the most part and not have issues. Except like breaking out in rashes or hives at random times...but, HEY, I can still eat! Most of the time anyway...

I had a MAJOR reaction to something last night that was one of the worst reactions I've had in a while. It was really odd, too. Usually when I start having stomach issues I get warning, it starts just a little uncomfortable and builds to more pain or discomfort or upsetness (is that even a word??). This time I had no warning at all. I was fine all afternoon, didn't eat anything unusual or different, then out of the blue I'm having major stomach pain/cramping and in the bathroom. It reminded me how thankful I am to not having issues like that everyday like I was a few months ago. But it also made me nervous and brought back the feelings of uncertainty and frustration and anxiety of not knowing why I was so sick. This reaction was so completely unprecedented, it made me start to wonder if there is more that we have yet to figure out...

But then this morning during my quiet time, God reminded me that regardless of how out of control I feel, how weak my body is, how frustrating my circumstances are - HE IS STILL GOD. He is in control of everything, He is strength in my weakness, and He can take even the most frustrating, discouraging, exhausting moments and use them for His glory. My struggles are not more than I can handle with God. He has and will continue to give me grace and strength for everything I face. As I continue in this season of doctor visits and the ups and downs of managing my health, I can (and WILL) trust God to have complete control when I don't.

Dysautonomia International Annual Patient Conference 2013

A couple weekends ago my mom and I went to the first annual patient conference with Dysautonomia International. I meant to post this blog sooner, but things have been pretty busy...better late than never! The conference was held in our backyard, so we figured how could we NOT go =)

I don't even remember how/when I heard about it, but I planned my visits home from school around the conference because I was hoping it would be a really good resource - not only for me as a patient, but also because I'm hoping to pursue autonomic research for my dissertation.

Overall, the conference was great! On Saturday, the first session was about different classifications of Autonomic Nervous System disorders. Even though at this point I feel like I kinda sorta maybe know what's going on at times, I was really interesting to hear the actual scientific explanations for everything. It also gave me some ideas to think about for research projects and what I might be able to do for my dissertation.

The other session that I liked on Saturday was about the importance of fitness for dysautonomia patients. We weren't originally going to stay for that session, but we were told that a lady with POTS was going to talk about her experience running a 50 mile race! I don't have any desire to run that far (at least right now...haha) but it was really cool to hear another person with dysautonomia talk about how they are still able to be active and run.

Sometimes I get stuck between 2 extremes. Because I am usually able to function at a fairly high level compared to other people with different types of dysautonomia, I can start wondering if I'm just exaggerating my symptoms and maybe it's not really as bad as it feels on my off days. On the flip side, on bad days, I can get discouraged and wonder if I really should be pushing myself to run or bike or swim. Hearing her talk about her experiences with running and sports and POTS reminded me that it's all about finding that balance - enough exercise to keep me functioning well, but not so much that I push myself over the line.

It also gave me the idea to race for dysautonomia awareness. I have a hard time asking people for money, so I don't think I'm really looking to do it as a fundraiser. But really, the biggest things is just getting the knowledge and name out there. I cannot count how many doctors I've seen who have NO IDEA what dysautonomia is. It makes it hard to get effective treatment when the doctors don't have any idea what is going on in my body. I try to explain it but they only listen so much or just write me off as being a hypochondriac...It also gives me the chance to use my running for something bigger than myself - and that's important to me. I don't want to get so focused on me that I forget that it's not about me...this is a cool way I can participant in activities that I enjoy while getting the word out about dysautonomia and the need for more research.

Back to the conference...Sunday was a bunch of break out topics. We didn't go to all the sessions, but we did go to one about the connection between OI (orthostatic intolerance) and GI issues. That was very interesting and was presented by the doctor that had referred me to my GI specialist. It was cool to be able to actually meet him and thank him for the recommendation. That referral came at just the right time and probably kept me out of the hospital, so I am very grateful and it was rewarding to be able to just say thank you.

The last session I'll mention before ending this ridiculously long post was about the effects of anesthesia and considerations for patients with dysautonomia. Some of his recommendations I have learned by trial and error...like I'm SUPER sensitive to certain  drugs. And others were good to know, such as certain drugs that are better or worse.

I was also able to talk with a couple of the doctors about some of my continuing symptoms that we have been trying to find answers for and figure things out. It was definitely a unique opportunity to have so many knowledge doctors in one place who really cared about the patients and understood what we were actually experiencing. It was good to get their recommendations about what to direction to go to figure out the symptoms I'm still having. So more doctor visits in the future, but at least now I feel like I'm moving in the right direction and not swinging blindly.

So that's my VERY belated and condensed (kind of...) version of the conference. I am planning to go next year, especially since it will still (hopefully!) be close to home. Until then, I'm going to see how I can design a research project to study the autonomic nervous system and hopefully get some new knowledge out there!