Wednesday, December 11, 2013

Good Days

I feel like the past few posts have all been about the bad days and doctors appointments that go along with manage chronic conditions. The last few weeks have been rough, and I've had more days down than up...but there are still good days mixed in and that reminds me that it won't always be this bad and things can and WILL get better.

Today was one of those good days! It started off a bit shakey. I took my dog out for a walk early in the morning and it was freezing! Try feels like 3 degrees freezing...needless to say I decided a morning run was NOT happening. So I decided to get on my bike trainer in my apartment this morning. When I started I felt pretty tired and shakey. I wasn't sure I was going to be able to get a good ride in, but as I kept going I felt better and better. It ended up being one of the best workouts I've had in a few weeks! AND, by the end of the workout, I was feeling something I hadn't in a while...I WAS HUNGRY!!!!

It still seems weird to say being hungry is a big deal, but for me it is...with the issues I've been having with my gastroparesis the past few weeks, it is a nice break from pain and nausea. Even better, I have been hungry all day =) =) I've been able to snack and just munch all day which has been fantastic!!! Again, thankful for small (or in my case, huge) answers to prayer. It seems like no matter what I've eaten today, I'm still hungry - WAHOO!!

Today has been a good day all around! I got a good bike ride in, started dinner in the crockpot, met a friend for coffee (or tea in my case), cleaned my apartment, re-organized my room, brushed and played with my dog - I call that being productive! Although, there was something I was supposed to do today...oh yeah, a FINAL's finals week at school and I have 1 take home left to finish. I was hoping to get it done today, but...oh well. Surprisingly I'm not all that stressed about it either! Ask me how I feel tomorrow though... But seriously, the fact that my stomach is cooperating, even if it's just for today, is enough to make it a good day. I'm going to enjoy the blessing of today by eating whatever I'm able and being productive in whatever I'm doing!! And not stressing about looming final exams that I have to finish by Friday... =)

Wednesday, November 27, 2013

Many steps back, one small inch forward...

I was thinking about the phrase, "two steps forward, one step back" but I didn't feel that it really represented how things have been I wrote my own title - MANY steps back, and one TINY, ITTY BITTY inch forward!! Okay, so it's not really that bad, but it kinda paints the picture of my last couple weeks.

I got a cold/upper respiratory thing about 2 weeks ago and that set me back a bit. For a little while it was hit or miss whether my asthma was going to flare up, but I was really proactive with upping my meds and using my nebulizer so even though I felt lousy it never seemed to settle in my chest - at least I'm learning how to manage something =P

But whenever I get a cold or something like that I seem to get dehydrated...which is ENEMY #1 for me...I could tell I was starting to feel off but couldn't seem to get ahead with my drinking (WATER haha =P) and salt. AAAnnnndddd, I think that's what started the downward spiral of doom...

Whenever I get dehydrated bad things's like the point in a horror movie where the creepy music starts to play and you KNOW something bad is about to go down but you can't do anything about it and you're so into the movie that you can't turn away...same idea except I didn't pay $12 for it...

So long story short, this past week my stomach was not on my good side and I wasn't able to eat a whole lot of anything. I ate mostly corn tortillas, steamed carrots, and PB2 (powdered peanut butter, i.e. no oil). And even that didn't always sit well...

I finally got a break on Monday and was hoping things were going to turn around. I had been praying they would (OBVIOUSLY), but also because tomorrow is Thanksgiving which is one of my favorite holidays and I so want to be able to enjoy dinner with my family.

Yesterday (Tuesday) was pretty good all the way until dinner...I had eaten pretty well throughout the day which was great considering I hadn't been able to eat much the entire week before. I don't know if I over did it and ate too much on my stomach that was still probably recovering, or if something I ate triggered the reaction, but I ended up in the bathroom for a good hour with everything I ate coming out both ends...NOT fun/pretty/enjoyable/WHATEVER.

Thankfully I was able to sleep well last night and woke up today just feeling exhausted, but it was still discouraging. Especially since I had seen my allergy doctor yesterday afternoon and had a pretty good appointment and we had talked about reactions I had been having and how to manage symptoms...I had told her it had been almost a month since I had thrown up...yeah, I know, great timing =P

I had left the appointment feeling like we at least had a plan of action, but also like how-long-is-this-going-to-take-to-get-to-the-point-where-I-feel-"normal"... I was feeling a bit down leaving but my mom brought up a good point that my going through this will at least help others down the road. All the craziness I'm going through with these diagnoses and treatment options can be frustrating, but someone has to go down this road first. I'm grateful for all the people who have already walked this least I have a name for what's going on even if we don't entirely know how to manage it...dayenu!

Even in the midst of everything, I don't want to forget that this life is not about me. It's about God, and trusting that He has a plan. I might not like it, I might be discouraged and frustrated, I might be in pain and sick, but it's all a reminder that this world is not my home. If I didn't have these health issues and would forget to turn to God because everything is good, then I am THANKFUL and BLESSED to have them. I never want to be comfortable in this life because then I lose sight of eternity. Not that I always keep that perspective...I was definitely not thinking "Oh, God, thank you so much for this pain and throw up" last night...

It also gives me the opportunity to be a witness to a group of people I could not have related to without knowing what they are going through. This morning I got a text from the mom of a young girl at church who is going through some of the same issues that I have. Because of my experiences, I can connect with her in a way that other people can't. God has given me a way to minister to people in a unique way, and for that I am also grateful!

I heard this song from Kutless this morning which is such a good reminder. This year will be a happy Thanksgiving regardless of how I feel or how much or little I can eat. I am at home with my family, God is still on His throne, and I am NOT defined by chronic illness, it is just a part of my life, just like everyone else who has struggles!

Even if the healing doesn't come
And life falls apart
And dreams are still undone
You are God
You are good
Forever Faithful One
Even if the healing doesn't come

There is ALWAYS something to be thankful for - Happy Thanksgiving!

Wednesday, October 30, 2013

Oaxaca, Mexico!!!

This post is WELL overdue, but life did not slow down just because I was out of the country for a week...if anything it sped up! I expected to come back to craziness since I was leaving right at midterms, but the first week back I was still super busy and swamped. Things have slowed down a bit, so I wanted to take a few minutes to recap why it's been so long since I've posted!

As the title of this post says, I was in Oaxaca, Mexico a little over 2 weeks ago with my church. It was a mission trip to take solar powered mp3 players and load them with the New Testament recorded in the indigenous language of 3 villages in the state of Oaxaca. Many of the villagers, especially the older generation, do not speak Spanish and cannot read. While there is a translation in the Mizteco language, the high illiteracy rate means it's more or less useless. The missionaries that we went down to support work on doing the recordings in the indigenous languages and distributing the mp3 players. We got to visit 3 different villages and hand out almost 100 players!

Sunday night we led a church service in a village that we also visited later in the week. It was a unique experience because everything would go from English to Spanish to Mizteco and back again. It was also so incredible to be worshiping alongside the villagers, different languages and cultures, but knowing that we all serve and love the same God.

Monday, Tuesday, Wednesday, and Thursday morning we were in the villages helping to distribute the mp3 players. Monday the guys also helped with a construction project at the church and cementing the dirt floor. I got to help the women prepare lunch, and learned how to make corn tortillas by hand! The women kept saying how much it meant to them that we traveled all the way from the USA to just spend time with them and give them the mp3. It was really special to be able to just live alongside the villagers and experience their lives.

Tuesday was one of my favorite days because I had a cool opportunity to step out of my comfort zone and let God use me. In the morning we split into 2 groups with each of the missionaries and went to the various homes to explain the mp3s and show the families how to use them. At the 4th or 5th house, I had the chance to use my Spanish and actually talk with the family because they understood Spanish and we didn't have to go to Mizteco. I was pretty nervous, but a few houses later, the missionary asked if I wanted to translate for one of the other team members! That was really cool, and definitely helped me feel a bit more confident in my speaking ability. God truly gave me the words to say each time. In the afternoon, the missionaries decided we were going to split into 3 groups so we could reach more homes and asked if I would be comfortable translating for the 3rd group! That was an awesome experience because God definitely answered a specific prayer I had prayed about being willing and confident to use my Spanish when the opportunity came. He gave me the words to speak, and I am very thankful to have had that opportunity!

Wednesday and Thursday morning we were back in the village where we had the church service. Both days were spent going around the towns and handing out the mp3 players to the families and explaining how to use them.

Thursday afternoon we drove back to Puerto Escondido (where we stayed the 1st night) for the last 2 nights of the trip. *Fun fact about Puerto Escondido - it's ranked #3 in the world for surfing waves!* Some of us decided to try surfing (although not on the world ranked waves...) on Friday which was a free day. I was able to stand up a few times, and we all had fun! We returned to the USA on Saturday.

Overall health-wise, the trip was really good. I had been very nervous about all sorts of medical related issues going down - would I be able to eat anything, was I going to have BP problems, would I have bad reactions to anything - more than anything I did NOT want to be a liability to the team. I did have one night where I got pretty sick from a meal and felt off for a few days after. We discovered later in the week, when someone else had the same dish, that there were onions that had probably caused my reaction. Other than that, I had no health issues while I was in Mexico, even after being served and trying armadillo!

UNFORTUNATELY, I did have a bad reaction on the plane ride from Mexico back to the USA. At the time we had no idea what caused my reaction. I started feeling bad in the airport which just got worse when we got onto the plane. About 10 minutes into the flight I knew something was really wrong...I was having trouble breathing, my HR was 2x my resting HR, I broke out in hives on my torso and arms, I was shaking really hard, I was conscious but not completely was NOT good. I took benadryl and was on oxygen for a while, which definitely helped. For a bit the flight attendant was saying we were going to have to turn the plane around, then we were going to divert to Mexico City, but I kept saying I just wanted to get back to the USA. I did NOT want to end up in a hospital in Mexico. With the benadryl and oxygen, I improved enough to where we were able to fly straight to our destination. The next morning when I pulled out my pillow and sweatshirt from the flight, there was a scent on it that I remembered smelling in the airport and on the plane. I started breaking out in hives again and feeling like I had on the plane, so I'm pretty sure I reacted to someone's perfume...having the oxygen mask on must have helped me breathe cleaner air so the reaction stopped.

I'm still kind of in limbo with doctors and trying to figure these reactions out...but it's getting to the point where I know I can't ignore these symptoms. That reaction on the plane was scary and the closest thing I've ever had to an anaphylactic reaction. I am not looking to repeat that EVER! In August I saw an allergist who made a preliminary diagnosis of Mast Cell Activation Syndrome based on excluding other possible conditions. I was managing things pretty well, but obviously not completely... Unfortunately, we're in an insurance battle over that doctor so I can't go back and see least not yet.

Anyway, this post was supposed to be a quick update about the trip - apparently it turned into a LONG post of more medical issues...oh well, what's the title of this blog again - Maintenance Required...yep, story of my life =)

Thursday, October 3, 2013

Dysautonomia Awareness Month!!

On campus right now everything is PINK. Welcome to Breast Cancer Awareness month. I'm not against supporting breast cancer research, but some of what people are wearing is slightly you really need bright pink glasses frames that you're wearing indoors??

But people NOTICE, and that's what awareness is all about. Even things as simple as the sports teams wearing pink cleats or jerseys during October...everyone knows what it's for and why the teams are doing that. Twenty years ago, breast cancer was just another cancer that people died from. Now, so much awareness has been raised, so many donations have gone toward research, it's a cancer that is *almost* curable. Talk about incredible progress in medical research just by raising awareness!

I'm not a fan of asking people for money. I'm heading out on a mission trip in a few days, and didn't even want to ask people for support for that. But something that my mom and a few friends pointed out was that not everyone is able to go on a mission trip. God has given me that opportunity, and other people are able to partner with me by helping to send me through financial and prayer support. It is a way for others to join in and be a part of the work God is going to do while I'm in Mexico.

I think my approach to Dyautonomia Awareness can and should be the same. I was to start by just getting the word out there. The incredible progress that has been made in breast cancer research didn't happen overnight. It started with just a few people getting the word out there. My friends and family who have walked this path with me over the past 6+ years cannot always DO anything for me. I cannot always do anything for myself. But we can get the word out there about dysautonomia. So many people have not even heard about dysautonomia, often doctors included. All research is based on funding availability. To get the funding for autonomic research, people have to KNOW about it.

This gets back to my idea of running races to raise awareness for dysautonomia. I want to be a part of getting the word out there, and hopefully finding better treatment to manage symptoms and hopefully find a cure! I'm hoping to do my dissertation on autonomic function in some way and would like that be the start of my own research in this field. Assuming I can get back to actually running races without collapsing or needing IVs, I do want to find a way to use something I enjoy to raise awareness about something that is a huge part of my life.

Tuesday, October 1, 2013

Race Report: Akron Half Marathon

Bear with me on this's going to be kinda long! I actually have A LOT to write about, but I think I'm going to split it into a couple posts for the sake of not having 1 post that goes on for as many miles as I ran this weekend.

So this past Saturday was the Akron Half Marathon. Last year I ran the full marathon with my mom and had a BLAST! It was probably one of my top 5 races I've ever run. Even though I was only doing the half this year, I was still hoping that it was going to be just as good.

My mom came out on Friday, and we were able to hang out and have a good afternoon/evening at the expo and relaxing. Saturday morning was perfect weather for a race! Last year we had found a building right near the start line that was open for runners. We found that same building this year and were able to just hangout indoors before the race started so we didn't freeze.

About 10 minutes before the start we left the warmth of the building and joined the masses at the start. The race had decided to have corrals, which was a change from last year. Based on when we thought we would finish, we were in Corral A. Akron does a fantastic time at the start with lots of great pump-up music and fun commentary. They did get rid of the fireworks at the start (probably due to not wanting explosions), but it was still a great start!

I had not run more than 8 miles in months without having major issues. The one 11 mile run I had tried a few weeks ago ended with me passing out at I was a bit unsure as to how I was going to do in the later miles of the race. On top of that, my mom was having major cough fits because of a really bad allergy flare. We made a great pair!

Overall, I felt pretty good until about mile 11...then I started dry heaving. It came out of no where, and I'm still not sure what happened. I think I just hit my limit and my body said "NO MORE." Since we were only a couple miles from the finish I kept going and we finished! Always a good thing =)

I really did not want to go to the medical tent, and tried to just lie down for a bit and see how I felt. I had had a very negative experience with a doctor earlier in the week and was tired of trying to explain to doctors who were not willing to listen what was going on with my body. But after about 30 minutes of dry heaving on the ground, we went over to see if I could get an IV.

The doctor who I saw was fantastic! If every finish line was like that, I would sign up for races just to get IVs! Not really...although it is an idea...haha =P He started an IV pretty quickly since I was dry heaving a lot and said he didn't want to even try oral hydration at that point (I wish every doctor would think like that!). The bags ran REALLY fast, so I was still dry heaving after 2 bags. About halfway through the 3rd bag I finally started feeling a bit better. That definitely helped, although I didn't start feeling better until today (about 4 days later)...

Because I got 3L of fluids, I actually felt a lot worse the rest of Saturday and Sunday. I calculated it out, and that was 6lbs of saline! For someone my size, 6lbs is a large percentage of my I felt super swollen and uncomfortable for a while. I hadn't thought I was dehydrated going in to the race, but I didn't pee for 14 hours after receiving the I guess I was! It was an eye-opener that I still have a lot to learn about what's going on in my body, although I do think I'm getting better...just don't take this race as an indication of that =P

Like I said, I felt pretty rough the rest of Saturday and all day Sunday. I had a lot of pressure in my chest and was having trouble breathing. It felt like all the fluids I had gotten had gone into my chest and were just sitting there...NOT FUN! By Monday the chest pressure had gone down a bit, and today I'm finally feeling more like myself...but with the added benefit of having received IV fluids! Wahoo!

So, lesson learned - as much as IV fluids help me feel good, 3L is WAY too much. It was a fun race up until where I started dry heaving, so we'll see if I run it again next year. I'm signed up to run the first Pro Football Hall of Fame Half Marathon in April. I've been feeling burnt out from racing, so I'm not ready to put any more races on the calendar. Plus I want to figure things out a bit better before I keep pushing myself. It seems there's always something going on, and I have to find the balance between doing things I love and staying healthy...hopefully they meet somewhere!!

Sunday, September 22, 2013

If it's not one thing, it's another...

Last week as I limped (yes, limped...I'll get to that in a minute) out of class, I was having a joking conversation with a classmate. He was trying to decide how many times things had "happened" to me in the year I had known him...i.e. been injured, passed out, etc. He claimed it was 5, but we could only recall 3, so I'm sticking with that =)

Anyway, I realized (not for the first time...) that things just always seem to happen to me! Even when I was younger I had a reputation for being accident prone. I even earned the nickname SVU in college...a reference to the Special Victims Unit from Law and Order. Between all my medical stuff and just being me, there never seems to be a dull moment. If it's not one thing, it's another...

The latest to report is my recent test of gravity...let's just say it's still there and functioning just fine =P I had taken Bonk for a walk to watch a friend play flag football and while we were hanging out, I found a tree that had *perfect* branches for climbing. I tried climbing it on my own, but the branches were too far off the ground. Soooo...not someone to give up easily, I got some help from to get into the tree.

It was everything I thought it would be! It was one of those trees that had nice thick branches on a bunch of different levels, would probably make a great tree for a tree house. Anyway, what goes up must come down...

From the ground looking up the lowest branches didn't look that high, but in the tree looking down...definitely was a bit farther. It was probably the height of a low ceiling, but I decided to try to jump. As I was getting in to position to jump I slipped and ended up half falling, half jumping out of the tree. I landed on my feet, but with a straight right leg. I felt it immediately and knew I had jammed it pretty good...

Initially I couldn't put any weight on my leg, but after a bit I was able to walk (limp) back to my apartment which was about a quarter mile away. It was pretty bad for a couple weeks...I considered getting x-rays because just light weight-bearing was very painful. But at this point, I feel like I'm finally healing! Friday was the first day I could seriously feel improvement in my knee and didn't have to limp around - yay! Just in time, too, since I'm running a half marathon next least my stomach has been cooperating the past week!

If it's not one thing it's another!

Tuesday, September 10, 2013

Invisible Illness Awareness Week 2013

Yesterday started Invisible Illness Awareness Week!

I was going to post yesterday but was super busy and didn't get a chance. So I wanted to at least post something quick today even though I'm just about as busy.

This is the first year I had heard about this, and honestly this is probably the first year I would have said anything about it anyway. One thing I've been learning this year is that it's okay to not be normal (not that I was ever normal as I'm sure my brother can attest to...). I've always been in a bit of denial about what is going on in my body either because I didn't want to acknowledge that anything was wrong or I wanted to prove that I could overcome anything just by working hard enough. In some ways I think I was also a bit nervous or scared because I didn't always know what was going on and that was a bit unnerving.

Obviously I'd definitely rather not to have to think about what is going on in my body and not always have to plan ahead and be on top of things, but I'm learning. It doesn't bother me as much to admit that my body does not react normally. My dysautonomia, gastroparesis, mast cell issues, food allergies, etc. do not define who I am, but just play a role in how I do things. I'm getting better at being my own advocate, both with new doctors and going out to eat. I'm also a bit more comfortable admitting to my friends when I'm just not up to hanging out because I'm having a rough day. I definitely still have slip ups, but I'm learning.

Will I ever "grow out" of having these illnesses? ABSOLUTELY. Will it be in this life? I don't know. BUT I do know that God's promises are always true, and He is my Great Physician. So if I am healed here and never have to worry about high fluids and salt or reading ingredient labels - GREAT! And if not, that's okay - I still trust that God is in control and He will be my strength when my body feels weak.

I'm reading a book called Jesus Calling, which is written as letters from God to us. This is a passage I read the other day that is exactly what I have been learning:

"Grow strong in your weakness. Some of My children I've gifted with abundant strength and stamina. Others, like you, have received the humble gift of frailty. Your fragility is not a punishment, not does it indicate lack of faith. On the contrary, weak ones like you must live by faith, depending on Me to get you through the day. I am developing your ability to trust Me, to lean on Me, rather than on your understanding. Your natural preference is to plan out your day, knowing what will happen when. My preference is for you to depend on Me continually, trusting Me to guide you and strengthen you as needed. This is how you grow strong in your weakness."

If I had any say in the matter, I'd choose strength over weakness, but when God puts it like can I argue?? Haha

I want to raise awareness for the rare conditions that are not well known so I, as a patient, do not have to educate the doctors that I'm going to see. I want there to be more research funding for this area of the medical field so better treatments, diagnostic criteria, and prevention/cures can be developed. So I want to support Invisible Illness Awareness Week this year because it's part of who I am and that's OKAY!

Sunday, September 1, 2013

Rough Week

Rough week...

I had an appointment with a specialist about possible mast cell activation issues that may explain the continued symptoms that I've been having. The appointment went well, but the fallout has been a challenge. I had to go off a bunch of my meds 3 days prior to the do the math...

By the time Monday came, I was already feeling a bit rough. I was encouraged after talking with the doctor; he seemed pretty knowledgeable, listened well, and is ordering some tests. Unfortunately, one of the tests requires 2 blood samples - 1 as a baseline and the other when I'm really I've had to be off my meds all week...again, easy math =P

Definitely more downs than ups this week, major return of some symptoms that had seemed to be more or less gone, but overall I was still able to go to school and work which was good since this week was the first week of classes. And then I got to Friday...

I've been training for a half marathon at the end of September, but hadn't done many long runs in the past few months, so I decided to try for 10-12 miles to see how I would feel. I was good until just before mile 10. Then I could tell things were rapidly going downhill, and I ended up throwing up in a Starbucks about a mile away from my apartment...

I threw up again about an hour later after trying to eat something and take some extra salt pills and water. I actually felt a bit better once I got in to school, so I was hoping that things would settle down or at least that I could ignore everything. No such luck... =P

I was taking a CPR re-certification course Friday morning and about 1/2 way through, things started feeling not quite right... I made it through the class, but as everyone was getting up to leave, I realized there was no way I was going to be able to walk out of there right then. By this point, I'm pretty dizzy, the room is spinning, I'm feeling lightheaded, shakey, and kinda disconnected with what was going on around me. I was able to lie down for a few minutes which helped. The CPR class was being taught by one of the Athletic Training professors and 2 of her graduate students. They were cool with me lying down for a few minutes and got me some water to see if that would help. One of the other GAs in my department hung back with me too.

After maybe 10 minutes or so I started feeling a bit better, so I decided to see how standing would go. I felt very dizzy initially and started shaking pretty hard right away, but it faded after a little bit, so I was hoping I'd be okay. I made it to the door of the classroom before I passed out.

It got pretty crazy after that I'm told. I was only unconscious maybe 15 seconds or so, but wasn't really aware of all that was going on for a while after. The EMTs were called, my friend had gotten one of our professors, there were people everywhere, I'm kinda glad I was out of it because I HATE being the center of attention and I'm SURE people were staring...

Shout out to my mom for encouraging me to make sure there were a few people who knew what was going on with me. She had wanted me to talk with at least one of the professors in my department so in case something ever happened (not that it ever would... =P) someone would know what was going on. Also, she wanted me to have a talk with a doctor at the health center so I could get some preventative care occasionally and in the case of an emergency someone would know me and my issues. That ended up definitely being good advice and an answer to prayer because I was able to just get taken over to the health center and get IV fluids instead of being taken by the ambulance to the hospital. Lesson learned...again, Mom is always right...and that it's always important for at least 1 person to know what is going on in case something does happen.

So long story short, I spent the rest of the afternoon at the health center getting fluids. That made a huge difference! I was still feeling a bit out of it/shakey/loopy/whatever you want to call it, but I know the fluids helped me recover much faster than I could have by just drinking. I've been taking it pretty easy all weekend, early night last night and just hanging around after church today and I'm feeling pretty good.

One other thing I learned was how important it is to have current medical information with me. I have updated medical alert cards in one bag, but that's not the one that I take to the card that I had with me was not my current info...another lesson learned - make sure everything is up to date so there is no confusion.

Here's to hoping and praying that week 2 of classes is significantly less exciting and eventful!

Saturday, August 31, 2013

Race Report: IronGirl Columbia

This race report is well overdue, but oh well =) I'm still going to write a race report!

I was kinda on my own in training for this triathlon because I didn't go home for the summer...Actually, the training ended up being more or less non-existent. Haha =) Because I was still trying to gain some weight after struggling with all the stomach issues I had in the winter/spring and trying to prevent another major flare of symptoms, I had been keeping my workouts about 1 hour total. That definitely limited the long bike rides/runs I did in it was a good thing this was only a sprint!

The day before the race Mom and I drove up to Columbia, MD for packet pick-up and to rack our bikes. One *minor* detail that was causing a bit of angst was the water temperature...the weather had been atypically cool so it was actually borderline the day before. Thankfully it ended up being 79 on race day, so no wetsuit needed!

Race morning went super smooth since we had to rack the bikes the night before. It was kinda chilly and started raining as we drove over. I had already decided I was just going to have fun and not go all out because I tend to have issues when I try to push myself and didn't want that to be the case. The rain didn't really bother me, but I was nervous about getting too cold. It ended up not being a problem because I warmed up about 5 minutes into the swim.

Swim - 24:10

The swim was fantastic! Once I got warmed up, I felt really good. It ended up being slower than I had hope, but I didn't care too much. There was a pretty long run from the lake to transition so that may have been part of it. Anyway, I actually discovered that I really enjoy being in the midst of the pack and getting hit and bumped. It makes it seem more like a sport I guess, haha =P I found myself looking for the groups of people and swimming in the middle so I could not only draft, but be in the mix of the kicking and such. Makes me miss that when I'm training on my own in the pool...I finished in the middle of the pack which I was happy with.

T1 - 4:02

Okay, let's not talk about my transitions...yes, it is 4 MINUTES and 2 my defense, the transition area was pretty big and I almost missed my bike...not really an excuse but oh well. Nothing much to say about T1 except that yes it was that slow, and no I don't care!

Bike - 1 hr 3 min

The bike was surprisingly good! I wasn't really sure what to expect on the bike due to my lack of outdoor riding...I think I went twice in July...but that was it. I had decided I was just going to have fun with it and not destroy myself for the run since I expected that to be my best leg. I surprised myself! I ended up averaging 15 mph which was better than I had done on the same course in July when Mom and I rode the course for practice. I felt good and was passing a ton of people! I was in the 3rd wave, so when started passing people in the 2nd wave, I felt pretty good =) I was 554 out of over 1500 racers, so for me on the bike, that's solid!

T2 - 1:52

So better than T1, but still slower than previous races. I'm chalking that up to the large transition area...and the fact that the racks were packed so tightly that bikes were falling as we (me + a couple other girls in my wave who finished with me) tried to re-rack the bikes so we had to take a few extra minutes to pick them up.

Run -  25:10

The run was 3.4 miles, so a weird distance. It was definitely much slower than I had hoped (7:20 pace) but I'm going to credit that to the crazy hills! Seriously, it was practically running the entire Rocky Mountains in 3.4 miles. I was passing people like crazy, which is always fun! Because this race had done the waves based on age group, I knew that everyone I passed in the 20-24 AG I was ahead of =) I was feeling tired but strong for the most part, but definitely starting to struggle a bit around mile 2ish.

So, I had properly planned out my nutrition/hydration/asthma/etc. BEFORE the race started. I had my inhaler and other stuff in my box on the bike so it was ready to go when I got out of the water. The plan was to quickly grab my inhaler prior to the run so I had it with me. It was pretty humid so I wanted to be sure I had it.  The plan was perfect except for the part where I didn't take into account the bikes falling over...that distracted me and guess what I ran out of transition without??? Yeah, poor life decision =P It was about mile 2ish (see the pattern) when I realized I didn't have my inhaler...

Long story short, I ended up in the medical tent getting a nebulizer treatment because I was wheezing and coughing after I finished. I think it was the mugginess combined with the effort. Even though I planned to take it easy and just have fun, I still get caught up in the competition and want to push myself at least a bit.

Overall, I did hit my goals of having a good time and not pushing myself too far. Yes, I did have some issues with my asthma, but that was a mistake that can easily be corrected. These last few races have been really good because I'm learning to listen to my body. I think by taking the pressure off myself to perform, I'm able to relax and not stress over my time and finish place. Instead, I'm able to relax and enjoy being able to compete and be active because only a few months ago, even that was a challenge. That being said, I'm feeling a bit raced out, so I'm not looking for any more races at the moment. I'm running the Akron Half at the end of September but will probably take some time off after that aside from a Turkey Trot or other fun race.

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 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 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!

Thursday, June 20, 2013

Race Report - Munroe Falls Triathlon

After the Ladies Choice Tri I did with my mom and our friends, I was so ready to do another triathlon. I had so much fun, especially since I didn't put any pressure on myself to race or push it. And my time wasn't all that bad either...maybe I've figured out my way of racing well...NOT racing, haha =)

Since my mom was training for a sprint triathlon at the beginning of June, and I didn't want to have to wait until August to race again, I decided to find a local triathlon around here. I found one that seemed super beginner friendly and low key, so I signed up!

I was excited for the race, but I ended up spending all week worrying about it...specifically, the water temperature. I have a wetsuit and had been using it during my training in one of the local lakes, but I really, really, really (really, really) didn't want to have to use it in the race. Taking it off had been about a 10 minute process, and even though I wasn't stressing about my time, I didn't really want a 12 minute T1 time...

Race day came and I was still stressing about the water. On top of that, the air temperature was only about 50 degrees so now I'm also worried about freezing after the swim. I was wearing sweatpants, a 1/2 zip, and a jacket when I picked up my packet, just to give an idea of how cold I was...and I thought I could swim without a wetsuit...

I ended up deciding to wear my wetsuit because I was doing this for fun and I would be miserable if I was freezing the whole swim and going into the rest of the race. I knew I would be a bit cold on the bike, but as long as I started warm, I would be okay. I got some tips from a few friends who were also racing, so I was hopeful that my T1 wouldn't be completely embarrassing =)

Swim - 8:09

The swim was fantastic!!! I didn't push it at all, I just wanted to enjoy it because this was my first open water triathlon swim. I loved it! It was a 400m swim - we started on a beach, swam out, around a green buoy, and back to the beach. It did not feel like 400m. In the pool, the swim can feel like it drags on FOREVER because all you see is the black line and lane after lane after lane. This was just a lot of fun. I got bumped a few times, but it didn't bother me at all. I felt strong and definitely like I could give more next time.

T1 - 3:06 (!!!!)

Not nearly as bad as I had feared! With a bit of bodyglide and some friendly tips, I was able to get my wetsuit off fairly quickly, at least quickly for me =) Helmet, 1/2 zip, and bike shoes and I was good to go!

Bike - 44:24

The bike was just over 12 miles, and definitely hillier than I had expected. I hadn't really had much of a chance to get outside on my bike, so the majority of my training had been on the trainer. It was 2 loops through neighborhoods around the park. I didn't mind the hills on the course, but I did mind the cars. There were police at every intersection making sure we were able to turn or cross safely, but the course was not close to traffic. We were often riding in the streets with cars behind us waiting for the traffic going the other direction to pass so they could go around us... =\ Since I hadn't been outside much, my handling skills are not great, so that made me nervous. I averaged 16.2 mph, which I was happy with, but I know I was definitely holding back in places because I didn't want to crash in traffic.

T2 - 45 sec

I was thrilled with my T2 time =) It definitely made up for the longer T1 time...I was 157 out of almost 200 for my T1...T2 was 39th! Just think of how fast I can go if I don't have the wetsuit...haha

Run - 20:30

The run was 2 times around a 1.5 mile loop around the lake. It was mostly rolling except for one big hill around mile 1 and 2.5. I hadn't worn a watch for the race because I didn't want to stress about my time and just have fun with it. That meant I had no idea how fast I was running, so I just ran by feel. I was passing EVERYONE. It was fun =P I felt a bit shakey off the bike, but I knew that feeling would pass so I just kept running through it. I felt really strong and knew I was running well, but didn't expect to do as well as I did...6:50 pace!!!!! That's faster than my 5K PR, and I definitely could have kept it up for another .1 =)

Total - 1:16:57

97 out of 200ish
5 of 12 in my AG (you should have seen the other girls in my helmets, aero bars, they were serious!)

Overall, I was VERY happy with my time. I had a blast and cannot wait until August to race with my mom! My next race is the Firecracker 5K on the 4th of July, and I'm thinking I should bike to the start since apparently I run best after swimming and biking =)

Friday, May 24, 2013

Restaurant Review - Maggiano's Little Italy

We don't eat out much in our family, mostly because it can be too complicated to find somewhere that I can eat at that everyone else is happy to go to. I'm perfectly fine eating the same thing all the time, so having limited options doesn't really bother me much, but the rest of my family prefers to go somewhere other than Chipotle occasionally =) Last night was my mom's birthday, and she really like Maggiano's. It's an Italian restaurant that is known for being really good with food allergies so we decided to give it a try.

It was great!!! I would highly recommend Maggiano's for anyone with food allergies; they were very attentive and incredibly accommodating. When I made the reservations, I was able to give them a heads up that I had multiple food allergies. While I was still on the phone, the hostess found a chef and let me talk with him about what options I would have and how they could work around all my issues. Since I can't have wheat, dairy, or fructose I'm pretty limited in terms of Italian cuisine =P Because of the fructose malabsorption, I cannot have onions (tried about a week ago and failed miserably) or and concentrated forms of tomato (i.e. tomato paste or sauces, fresh tomatoes are ok). I wasn't sure what I would be able to eat, especially after he said their tomato based sauces all have onions in them, but he sounded very knowledgeable and confident that they would be able to accommodate me so we gave them a try.

When we got there, I let our server know about my food allergies. He wrote down what I told him then went and brought a chef out to speak with me. Instead of listing off a limited gluten free menu, the chef asked what I wanted which was cool! I told him I heard they had corn pasta and I would like to try that. He said that their tomato based sauces all have onions in the base, but he could make an oil based sauce with fresh tomatoes and other vegetables. I'm not a huge fan of oil sauces (the fat is hard for me to digest) but I asked him to just go light on the oil and decided to try it.

If I had any complaint it was that my dish came out with the rest of my family's appetizers. So I ended up sitting around for most of the main course and dessert because I didn't want it to get cold. BUT it's a minor complaint because everything else was so positive. The past was good. Gluten free pasta can be hard to cook well, but they did a good job! I ended up having their GF corn pasta in a light oil sauce with sauteed spinach, fresh tomatoes, mushrooms, and zucchini. I'm happy to say that it tasted good, and it didn't make me sick!! Woohoo!!

AND Maggiano's has a deal with certain pasta dishes that if you order one, you get a second full order to take home. Our server (who was fantastic) entered my pasta on our bill in a way that let me take home another full sized order of my pasta! They didn't even charge extra for gluten free! So I got 2 full sized orders for the price of a normal pasta dish. The portions are so large, that I only ate about half of my order last night, so I was able to take home a lot of food =)

In case you haven't figured it out by now, I highly recommend Maggiano's for anyone with food allergies =) Even if you have different allergies than I do, the servers and chefs were very knowledgeable about their dishes and the ingredients as well as cross contamination issues. I had a great experience, and now have another restaurant to add to my list of safe places to eat if my parents and brother aren't up for another round of Chipotle!

Sunday, May 19, 2013

Race Report #2: Ladies Choice Tri

One week after the Pittsburgh Half, my mom and I did a mini triathlon with a friend and her mom. We signed up for this race on a whim, but it turned out to be a really good chance to try (tri?? =P) things out with our new road bikes and clip-less pedals.

This was my first triathlon in 3ish years, so it was perfect for me to get back into the triathlon mentality again. It was a super sprint: 400 yd swim, 8 mile bike, and 2 mile run. I was seriously undertrained for this race, but went in with the attitude that I was just going to have fun, and it was a BLAST!!! I had so much fun I can't wait to do another.

I did the 400 yds in 8:15. I was happy with that because I had swam once in the past 2 months. My swim that I timed to see where I was at was a bit faster, but my pool I trained in was a bit smaller, and I was doing flip turns. This race only allowed open turns and you had to touch the wall at the beginning AND end of each lane. This definitely slowed me down, but like I said, I was very happy with my time.

Transitions were included in the bike and run times, so there was no official T1 or T2. But they were definitely there =) and one way I'll be able to get faster (hopefully) next time. I had brought my favorite running socks, but didn't think about the fact that they had compression in them...not the best idea for wet feet...I definitely lost some time trying to get my socks on during T1. Other than that, I had no complaints about T1. I made it out and mounted my bike with no issues (yay!) and was off on the bike!

I was most nervous about the bike going in to this race. I had been out on my bike with the new pedals a total of *1* time before the race...and that had been the day before...haha, not quite the best way to train for a race, but oh well =) I had been biking on my trainer so I was comfortable on my bike but just wasn't sure how I was going to manage the pedals. Turned out all my worrying was wasted because I had no issues. If anything, it was even better than I could have planned! The course was tricky because there were a lot of tight turns, and it was SUPER windy (read ~20mph). But I felt strong and was passing a lot of people during the bike which was fun =) I did the bike in 30:31 which ended up being 1 second faster than my mom =P

T2 (or lack there of) was pretty smooth. I made it in to transition easily without crashing (always a plus!) and switched my shoes quickly and was off. I even remembered to take my helmet off!

I felt a bit rough at the beginning of the run, but I was expecting that. I was able to settle in to a good pace about a half mile into the course. I had forgotten to turn my watch on at the beginning of the race, so I had no idea what pace I was running....I think I may do that more often! I felt super strong and was just running by feel. I was able to push myself without having the pressure of wanting to hit a specific pace. It turned out really well, too! I ran a 14:15 for the 2 miles, so averaged a 7:08 pace without pushing much at all.

I ended up finishing 6th overall (out of 135ish) and 2nd in my age group. I was 28th in the swim and the bike, and 1st in the run!! Not bad for my first triathlon in years...and even better, I had a blast! It was so much fun, I can't wait to do another.

Thursday, May 16, 2013

Race Report - Pittsburgh Half Marathon

Going off food/diet for a bit and writing about a few races I've done recently!

I ran a disastrous race back in March just before we started figuring things out with my stomach problems. I didn't train for it because I had been feeling so sick and couldn't eat. The evening before the race I started feeling worse than usual, so I went in feeling bad. Let's just say it didn't end well...yet another trip to the medical tent at the end of a race...

BUT I am happy to say Pittsburgh went much, MUCH better! Even though my mileage going in wasn't much better than before Reston, I had been feeling a lot better in the weeks leading up to the race - translation: I was able to eat without pain!! Who knew that eating makes a big difference?!?! =P

I met my parents in Pittsburgh Friday night and we spent the evening and all day Saturday walking around the downtown area of the city. I had never been to Pittsburgh before so it was a lot of fun to see at least the part of the city between our hotel and the expo. My mom has been wanting to run this race for a while because she loves Pittsburgh, and now I can see why. Our hotel was right at the edge of a park where the Ohio, Allegheny, and Monongahela (no I can't pronounce that...) Rivers all come together. It was also right at the finish line - BONUS!!

Sunday morning was sunny and gorgeous. As always I stressed about what to was 50, clear, with little to no wind. I ended up wearing shorts with compression sleeves and a long sleeve shirt. It was perfect. I was cold at the start (who isn't) but warmed up within a few miles and never felt like I wore too many layers.

I was running this race with my mom and we were planning to take it easy, walk the water stops, and not worry about our time. She had been having a lot of knee problems, and I had been having all my stomach issues, so neither of us were as prepared as we would have liked.

The first couple miles were great! It was very crowded because the marathon, half, and relay all started together, but we settled into a comfortable pace. We stopped for a quick bathroom break around Mile 2ish, but otherwise we were running easy. I don't remember all the details of the course, but I do remember really liking it. We ran over 5 bridges and crossed all 3 rivers which was fun and very scenic. There were a few slight (very slight) inclines as we went over the bridges, but no large hills in the first part of the course.

Whenever we mentioned we were training for Pittsburgh, everyone always warned us about the hills, so throughout the whole course we were anxiously waiting for Mile 11 and the supposed "killer hill." Right before the hill we crossed the last of the bridges. As we were running across we could see people running at the top of a cliff, so I figured it was close. After the bridge we turned a corner and began running up. It was definitely a hill and we KNEW we were running up it, but after the horror stories we had been told, it wasn't anything worse than hills we trained on. It was about a mile long, but as soon as we reached the top, it was all downhill to the finish, literally!

Overall, Pittsburgh was a fun race! The expo was pretty good - LOTS of vendors, but not as many great deals as you can get at some races. The course was fun and scenic. I didn't like how crowded it felt the whole time, but I also didn't feel like it affected my running at all, so I guess this really wasn't that bad. The best part: NO MEDICAL!!! My mom and I finished and walked around for a bit to keep from cramping up, then headed back to our hotel to shower and wait for my dad. He finished in a decent time considering his training, too. We all enjoyed the race and had a good time hanging out and bonding as a family! =P Successful weekend!

Completely unrelated to the race, but still a major high point of the weekend - on our way out of the city after the race we stopped at a restaurant a little ways outside of downtown called Mandy's Pizza. They had numerous gluten free/dairy free options and it was fantastic!!! I would almost run Pittsburgh again just to be able to go eat there...

Friday, April 26, 2013

Youbars =)

At this point I'm pretty good knowing what I can and cannot eat with the wheat and dairy sensitivities. I know my tolerance levels and where companies hide ingredients, etc. But the fructose malabsorption is still relatively new and I'm learning. For instance, who knew that practically ALL gluten free products are either made with brown rice flour or sweetened with brown rice syrup...brown rice being on the maybe list for fructmal...That alone has made things challenging.

One food that I have been having the hardest time replacing are granola bars. All the "non-healthy" ones are made with tons of sugar in the form of honey or molasses and usually contain wheat or dairy, and the "healthy" bars often have, you guessed it, brown rice flour or fruit. So replacing the bars I used to eat has been slow going.

BUT I recently discovered youbars and they are fantastic!! It's a build-your-own granola bar website. They have all sorts of different combinations that you can make. It was really cool because you can pick everything from which nut butters you want to adding extra protein powder (they have DF and GF options?!?!) and different types of sweeteners. I was super excited when I first tried it.

Unfortunately, Attempt #1 crashed and ended up tasting very earthly and exactly like what you might think sawdust would taste like. Youbar has a 100% satisfaction guaranteed policy though, so I called them and told them my problem. I had chosen 3 different protein powders thinking more is better since I'm always looking to add protein, but the rep said the combination of those powders can give the bars a dry/dusty taste. So I dropped 2 of the 3 proteins and added a second nut butter in Attempt #2 (which they sent me free of charge =D).

Attempt  #2 was a success! They came yesterday, and I've already eaten 2 =) The bars still have a bit of dryness too them, but that is probably because I can't use dates in the base of the bar like they recommend. So in this case it's probably good that my taste buds often like things other people don't... Haha, I will definitely be ordering another batch when I finish these...which at my current rate will probably be this weekend... =P

Tuesday, April 23, 2013

New Foods!!

I'm finally at the point where the days that I'm in pain are less frequent than the ones where I feel good! Woohoo!!

I have actually had a stretch of a few days now where I haven't had any pain at all! I'm excited, encouraged, relieved, all of the above. But as I'm starting to feel better, I'm also starting to add foods back into my diet. I've been pretty strict with what I'm eating so I can get to this point where I'm not in pain anymore and am feeling good. Now it's time to begin trialing foods that are on the "maybe list" for fructmal to hopefully add some more variety to my diet.

So, the big foods that would be really nice to be able to add in are peanut butter, brown rice, bananas, black beans, and tomatoes. The black beans and peanut butter are both two of my favorite foods, but also good sources of protein since I'm always fighting to get enough protein in my diet. Bananas are just good =) and having another fruit option would be nice. The brown rice is a tricky one...I am fine with white rice, so it's not essential that I can eat brown rice. BUT I had no idea how common brown rice flour and brown rice syrup are in gluten free products. So even if I can't tolerate brown rices itself but can have the flour, that would make finding a GF cereal (or any other GF product) much easier. The tomatoes are more a convenience. Most of my crockpot meals that I love have salsa or tomatoes in some form in them...and now that some restaurants have GF pasta, it's often served with a marinara sauce (not to mention it's often brown rice pasta...). Even though I don't particularly like tomatoes by themselves, being able to have salsa or a tomato based sauce would be fantastic!

I started with black beans because I'm a huge fan...and it would at least allow my family to eat out at Chipotle or Moe's or something like that if we are out somewhere. The black beans have been going well so far. I seem to be okay up to 1/2 a cup which is fine because I usually eat them mixed with rice or quinoa anyway. I just started with peanut butter a few days ago, and so far have been doing really well. I've only been having about 1 tbsp at a time, usually on celery or with pretzels, but that amount has not given me any problems. I had peanut butter twice yesterday, at lunch and right before bed and had not had any problems yet...hopefully that will hold! Next on the list are bananas, so maybe Thursday or Friday assuming all continues to go well with the peanut butter.

Monday, April 15, 2013

Avocado Chicken Salad

So I'm not much of a cook. I LOVE my crock pot, but actually using the oven...not really my thing. But I found a cool recipe for chicken salad made with avocado instead of mayo and though I might have to try it. I never really like chicken salad because I'm not a fan of mayo, and I AM a huge fan of guacamole, so I though this recipe might be really good. Since my parents recently sent me a Magic Bullet, I figured this recipe would be a good one to break in my new blender!

It came out really good! I was a huge fan and will definitely make it again, even though I don't really like cooking =) I'm actually thinking about making the same recipe but trying tuna instead of chicken because that cuts out the baking time (can you see I'm not a fan of cooking...).

Avocado Chicken Salad

2 chicken breasts
1/2 avocado
2(ish) tbsp chopped scallions
1/2 lemon - juiced
salt/pepper to taste

1) Bake chicken breasts in the oven at 350 until cooked through.
2) Chop into small pieces and add to the Magic Bullet.
3) Add the 1/2 avocado and scallions to the blender on top of the chicken
4) Squeeze half a lemon over the ingredients in the blender
5) Blend until them mixture is the desired consistency
6) Salt and pepper to taste
7) Can serve warm or refrigerate for a few hours and serve cold

Like I said, it was really good! I will probably make it again, and am definitely considering trying it with tuna. Adding chopped celery and/or carrots or some nuts could be a nice addition for a bit of crunch.

Wednesday, April 10, 2013


You know how most people see the Entenmenn's bakery trucks and immediately want donuts or coffee cake...I see produce delivery trucks with pictures of fruits and vegetables all over the side and start craving grapes and bananas and apples and any other fruit.

The other day I was running one of my normal routes, but because it is now getting light in the mornings, it was at a different time of day. It was probably about 7 or 7:15 and I was running past a Jimmy Johns. They were getting their daily delivery of produce (at least that's what I'm guessing considering the truck...) and I started wishing for lots and lots of fruit =P

I'm hoping that as my stomach settles down I'll be able to increase what fruit I can eat, at least in moderation. Right now the only fruit I'm eating is a couple strawberries and half a would definitely be nice to be able to eat a bit more...

But on the positive side, a few days ago I tried green peppers and seemed to do well with those. Then yesterday I tried black beans which also seemed to go well! I'm going to try black beans again tomorrow and hopefully won't have any problems. I was kind of nervous because some people have said beans and legumes can cause issues with fructose malabsorption but that's another major food group for me and a good source of protein. So hopefully day 2 of black beans will cooperate and then I can move on to some other foods!

Wednesday, April 3, 2013

What's for dinner??

I'm not least I don't consider myself creative when comparing myself to friends and family (especially my brother, he puts everyone else to shame...) Growing up I was never really into art or music or theater, it was always sports like soccer or horseback riding or even basketball for a couple years...

I've also never really been into cooking. Although I do LOVE my crockpot, and I mean LOVE my crockpot, did I mention I have a crockpot?? And I'm a huge fan?? =) Anyway, it's so nice to be able to take a bunch of ingredients and toss them in the pot and hit "go!" No thinking involved, no creativity required...until now...

Since being diagnosed with fructose malabsorption and changing my diet, I'm realizing just how much of what I ate is (at least for now) off limits.

Example: one of my favorite crockpot meals - Chili:
ground beef/turkey - ok
beans (black/kidney) - debatable but probably ok
tomatoes - not okay
onions - not okay
peppers - also debatable but green seem to be okay

So for now, chili is out. Okay fine, I have other crockpot meals I can make - Chicken Salsa:
chicken - ok
corn - ok
black beans - again, a maybe, but probably fine
salsa - nope...

Strike 2...okay, now what? As I've been going through my "recipes" (I use that term loosely...I cook/bake like I did chemistry, one reason I'm no longer a chemistry major...) I'm realizing just how often I used fruits, tomatoes, onions, etc. In some ways I'm discouraged because I'm really struggling to figure out what I can and will eat, especially now that all my leftovers from spring break are gone...but at the same time I'm encouraged!

I was in so much pain and having such a bad time eating, the fact that the majority of my diet had been coming from foods I cannot absorb means that I should get better! Even if I do have to cut out a lot of my favorites, I am hopeful that the severity of my symptoms correlates to the amount of "bad" foods I was eating prior to the diagnosis. And there are reports of people healing from bad fructose malabsorption! While I may not be able to go back to my prior diet of 10 lbs of grapes, 10 lbs of carrots, 5 lbs of strawberries, 8 grapefruit, 2 lbs of blueberries, and 10 apples a week (yes, that was just me...) I *hope* that once my stomach settles down I can at least add some of my favorite food back in at least in small amounts (maybe just 5 lbs of grapes and carrots per week =P).

In the mean time, I still need to figure out what I'm having for dinner tonight...

Sunday, March 31, 2013

Blogging...Take 1

The idea for this blog came about a few days ago. My mom and I had just sat down in my car after a week of GI testing for the stomach pain I had been having on and off for 6 years. The past 6 months had been especially rough, so I had spent my spring break undergoing multiple test trying to get a diagnosis. It had been a long week so the last thing I wanted was one more thing to do, but as I started my car the maintenance required light came on. At that point we both laughed because it was just just funny that it was one more thing at the end of a long week. I joked that it was a reflection of my life...always something going on and one more thing to deal with...and so this blog was born!

I have been diagnosed with an autonomic nervous system dysfunction (dysautonomia) called Neurocardiogenic Syncope. This affects blood volume and flow throughout the body. It also causes the disruption of many of the involuntary functions of the body that are typically considered "automatic." In my case the majority of my symptoms are digestive related. I have sensitivities to milk (all dairy) and wheat, and just recently was diagnosed with fructose malabsorption. Because of the dairy and wheat issues, the majority of my diet prior to that diagnosis had been fruit. My mom and I have been on the computer, trying to figure out what is left for me to eat. That's where we got stuck and the idea for this blog came about as we were climbing in the car.

There is no general consensus on what foods are good or bad for fructmal. There are some foods that are agreed upon that are BAD (such as apples, pears, onions, leeks, etc), and certain categories of foods that are GOOD (meats, eggs). However, there is considerable ambiguity with everything else. Not only is there some disagreement on what foods are acceptable, but the fact that fructose and fructans, its polymerized form, can be found in many ingredients cleverly disguised under other names... That makes it difficult for someone beginning this process of figuring out what is left to eat very, very (did I say very) challenging and a bit frustrating. I'm hoping that by blogging, I can keep a list for my own record of foods that do and do not work. In addition, as I'm starting to cook and find recipes that are okay actually taste good (that being the key factor =P), I can keep a record of those recipes for reference and be able to share them with whoever may want to bake/cook something for me =).