Cookies and Smoothies..

Have you ever made the best cookie of your life?

Judging by the smell and looks of the cookies I just whipped up, I think I just may have done it. My buddy Kevin and I are heading up to Traverse City today for some race meetings tomorrow. To fuel our rides there and back I decided to bake us some peanut butter cookies. Now these are not just any PB cookies. These are peanut butter cookies with bits of broken pretzels and a chunked up sea salted caramel chocolate bar. Everything but the pretzels came from TJ's so you know their good. I cannot wait to sink my teeth into these beauties!

To start my morning off right though I made one hell of a smoothie.

I mixed up:

1/2 cup'ish Fage Plain 2% Greek yogurt

1/2 cup ish (who measures?) frozen Lifeway plain Kefir

1 Banana

1/2 Cup frozen strawberries

1 Tbsp Flax seed meal

Dash of Silk Almond milk to get it blended.

Time for some running and yoga followed by a long ride up north! We're getting to TC just in time to see the Lions take on the Saints..of course we'll be watching from a local brewery..

Kickstart her Heart!

I have an incredible friend named Rose.

This is Rose and me singing F*U*C*F at the 2008 Just Let Me Breathe benefit...now my friend can sing anybody's socks off and when I watch the American Idol shows or America's Got Talent shows and hear those singers I get a little uneasy. I am thinking to myself "really? This is the best? They obviously haven't hear Rose sing.." This girl has pipes AND she is crazier than every little Fraggle Rock character put together.

Oh, Rose has CF too and we met in the wide world of social media and have been friends ever since! We met in 2008 when she came in for the benefit and since then we have partied in France, Miami and Detroit (twice).

This is us with some Norwegians in Paris. They were singing Desperado to us..and that is a fact.

So why am I blogging about Rose? Well, she and her awesome group from Bay City are recording a live album and need help. They have launched a Kickstarter campaign and are seeking funding through this campaign to pay for it!

Click the pick below to hear her story and to help her out!

If you are tired of crappy music and want to see some TRUE talent please check Rose out!!

Em

A very falafel Thanksgiving!

This was one of the best grown up Thanksgiving that I can remember. When we were kids we would shuffle between both sets of Grandparents. The Schaller's would be a bit more serious of an occasion with prayer and 20 people talking about all of our cousins, which I am still questioning..how can we be related to this many people with so many different last names? The Quandt's would be much smaller, my uncles would be throwing rolls across the table at us, "god dammits" would be flying from the kitchen and laughter could be heard a mile away.

Since we've all "grown up," Thanksgivings have been a little different. In my early 20's I experienced the "biggest party night of the year" and not been able to choke down Thanksgiving dinner the next day. Over the past few years I have spent turkey day in NYC or upstate NY with my uncles which was fabulous. Before Jason and Carrie moved to Orlando, Carrie would hammer out some of the best meals of my life. Since they moved (sadddddddd) we luckily get to spend our holiday with Adam, Marcy and Kacey. We do this on the west side of the state or like this weekend, up at Kacey's favorite place, da cabin!

Because of Thanksgiving day conflicts like work and races we had our official Turkey Day scheduled for Friday. Mama, Daddy and I headed up to the cabin on Thursday listening to the Lions vs Packers game. We got our asses kicked but we still had a great time snacking on Avalon pumpkin cookies and enjoying the sun.

Up north Michigan leaves you very few options for a Thanksgiving meal and as we found out the only thing on the menu in all 3 restaurants was Turkey. Weird. Now even though my mom can rival the Old Man in A Christmas Story for being a turkey junkie, she did not want to eat it on Thursday because she would be having it Friday at our feast and all the way through next Wednesday.

As we cruised through downtown Traverse City a purple light that read "Falafel" caught my eye. Perfect, a non traditional Thanksgiving, this is just what I was hoping for. As we were seated in this little Middleastern restaurant the waitress came to us and said "the chef is working on your plates.." "Ummm, plates of what" I asked. "Turkey!" Just our damn luck, a middle eastern joint is serving turkey and mashed potatoes. Well, our luck turned around when we sweet talked the waitress and she came back with a menu and this news "order anything you want, the chef will hook you up!"

Deb and I went for the falafel and pops went right to the shwarma. This is just what we were hoping for. (We really wanted Chinese food but all of the restaurants were closed..have they not seen A Christmas Story?).

After free pumpkin pie and baklava we tipped our waitress big time and cruised back to our little cabin in the woods. Friday came and so did Adam, Marcy and Kacey. We had a really delicious Thanksgiving meal, a few glasses of wine and some pumpkin cheesecake that I am still trying to digest. A very relaxing weekend was had by all and we all caught up on our sleep.

All I can say is watch out Christmas...all 3 Schaller kids will be home and things are gonna get wild! A Schaller 10K is in the works that will be followed by 200 push ups and planks. Oh and I'm sure the rolls will be flying at dinner.

Tips from Canadians

Today I met two Canadian women in their 50's. They were shopping at Pure Detorit while I was there and we got to chattin. I like just about every Canadian person I meet. They're always nice, courteous, fun to talk to and usually have some good things to say. These two ladies fit the bill and were delightful!

Canadian's travel tips from today:

You must go to San Diego, you'll fit right in. 30 somethings (yikes!!!!) all over who are fit, single, eat healthy. The ocean is there and you will love it!

Go to Vancouver! It's beautiful. Seattle is great too oh and Portland!

This n that:
You're not married are you? Good..don't! (no worries there!)

You're waist is tiny..how? (I then explain my running, biking, yoga...eating a ton)

Keep running beacuse pretty soon all that eating will catch up to you.

Well I'm looking for a sweatshirt..that doesn't say Detroit. ( ummm wrong store?)


Talking about Rock CF:
You don't have it do you?

I was going to say, you're just like my hairedresser. I used to do benefits for her. You're just alike, little, cute, same personality..you both talk fast.

That was my 10 minute conversation with these super nice ladies who I hope to see again. We did of course talk about the very cool seatbelt bags sold here..and one did buy one!

Put it on everything!

Today my mama and I hit up my Trader Joe's to get all of our goods for Thanksgiving. I got all my apple-cranberry- pecan stuffing ingredients and my fall veggies for roasting. Mama picked up her healthy little all natural, vegetarian fed, (no hormones or antibiotics), Minnesota Viking raised grade A turkey. We are now ready for our first Up North Thanksgiving! My brother Jay and my sis (in law) Carrie live in Orlando (land of Sea World, Disney and magic) so unfortunately they won't be enjoying the carb-fest with us. Soon enough we will be able to teleport..I cannot wait for that day!

I am on the Detroit 5/3 Turkey Trot Race Committee so I'm going to have my pops work with me on the course Thanksgiving morning while my mom runs the 5k. As soon as we are done with that we are hitting the road up to the cabin. Adam, Marcy and K will meet us up there Friday am and we will partake in our food party on Friday afternoon...after the Schaller morning run of course.

Trader Joe's Pumpkin Butter is the moral of the story here though, the official start to my holiday season. I picked this treat up this morning and immediately came home to make an almond butter & pumpkin butter sandwich. For my afternoon snack I swirled that shit around in my plain Greek yogurt and topped it with granola. Now I'm ready for anything! This stuff is so good that I will put it on anything that I want. Waffles, toast, yogurt, in muffins, in oatmeal...you get it. So if you live near a TJ's and love pumpkin, eat this now.

I can't put my arms down..

A Christmas Story is my favorite movie of all time. Period. My TV is tuned into TBS for the 24 hour marathon, I have the special 25 year anniversary DVD, I've been to the house in Cleveland where they filmed it and I know every line in the script. My dad and I even tried to develop it into a musical on our way cross country after my ride to Ellen. Also, musical theatre and Broadway is my favorite thing. So when I heard my favorite were combining forces I had a mini stroke.

Just like when books become movies, going to see an adaptation from a movie to stage is always a little well, scary. Expectations are hard to meet and it could be being done just to be done. I went in to this show with some pretty low expectations thinking the music could be a little hokey, the cast would be a little thin and the whole thing would be cute and fun but not incredible.

Let me just say this, GO SEE THIS SHOW!

Jean Shepherd who narrates the movie as the adult Ralphie Parker was set down stage right at a table. He would narrate from there which was cool but he also became key characters in the show too. The leg lamp delivery guy, the mailman etc. Such a great way to incorporate and use him. Down stage left was a dude who did all of the sound effects for the show. He was the voice of the Bumpus hounds, the footsteps up and down the basement and also the sound for the nuts & bolts when the Old Man is changing the tire. This guy also sang and danced in some scenes too.

The music was very appropriate and the songs were great! My favorite was the You'll Shoot Your Eye Out number sung by Ms Shields dressed as the wicked Witch. Great song but when Scut and Grover came on as the monkeys and did a dance number I was dying.

This show is HILARIOUS and hits all of the marks in the movie. Ralphie to the Rescue is huge production that happens when the kids are writing their themes in class. It's a showstopper that is revisited a few times during the night.

Let's talk about Ralphie...this kid was great! He didn't have the blonde hair but he could sing! Randy was hilarious and played this part just right. The "I can't put my arms down" part made me wet myself a little. Old Man's character was great! Less all around grumpy than in the film and John Bolton added a nice humorous and sweet side to the character. Mother was great and just what I wanted to see, quirky, frazzled but sweet.

The flagpole seen happened, the Pink Nightmare was there, Oh Fuuuuuuuuuudge, the Major Award..they were all in it and done perfectly. My favorite was Up On Santa's Lap, when Ralphie tells Santa that he wants the damn Red Ryder. Santa is drunk, the elves are naughty and this combination made it hard for me to keep it together.

Of course the night ends at the Chinese Restaurant with the elusive "Deck The Halls" number but it also ends with a very sweet song that ties in the family aspect to the show and this is the heart. Any good show has a heart and this one's is big.

Us Detroiters are so lucky that this show made a stop at the Fisher theatre. It only hit 5 cities on the tour. You have until November 27 to see if here then it travels to Tampa and wraps up in Chicago.

Here is Lowell as the Pink Nightmare

P.S. I even loved this show so much that I had a dream that I got a Red Ryder BB Gun..

My Brother Adam

My brothers are the damn best! Jason was born first, then Adam and I came along. Having two older brothers is definitely the way to go, especially if you have mine. Adam was nominated (by you know who..) to compete for the West Michigan's Finest for the CF Foundation. This is a bathing suit contest and he has really been working out hard to win this...

Below is his cute letter asking for $$$..check him out!

My little sister, Emily Schaller, was diagnosed with Cystic Fibrosis when we were little kids. Being just a kid, I didn't understand exactly what it meant. I remember regular visits with Emily to the Detroit Children's Hospital, seeing her get sick and endure all sorts of medications and treatments, but it never really occurred to me as a child that she had a serious illness.

Our parents always told us that there was nothing different or weak about Emily having CF, and they encouraged Emily to participate in sports and other activities, and Emily proved that point well many times. Emily has since grown up to be a successful and inspirational person and a leading force in the fight against Cystic Fibrosis.

When I was young, our family participated in events with the Cystic Fibrosis Foundation such as Bowl for Breath and Great Strides events. In the last several years, I have been very fortunate to be able to help Emily with her organization, the Rock CF Foundation. I will soon be honored by the Cystic Fibrosis Foundation at a special event recognizing outstanding young professionals in my community. In accepting this distinction, I have committed to raise money to help the Foundation realize its mission of controlling and curing cystic fibrosis (CF). Please help me meet my goal by making a donation. Together, we can make a difference in the lives of those with cystic fibrosis. Thank you for supporting my sister and the mission of the CF Foundation! If you would like to help Adam become West Michigan's Finest, click HERE or on the pic of him with his beautiful wife and my favorite little kid K!

Concord...Land of Subarus and... nice people!

Yesterday was a The Book of Mormon kind of day. I jammed it on both flights on my way to New Hampshire and even had it cranked on the treadmill when I got to the hotel. I cannot get enough of this show!

So I was invited by the Dartmouth-Hitchcock CF care team to be the Keynote at their annual Family night. I jumped at this opportunity right away because I love family nights and I have never been to New Hampshire..perfect! One of the docs (Sasha) picked me up from the airport and I knew I was in good hands when I climbed into her Subaru and ended up at a sandwich shop that uses local Cheddar, great fresh veggies and their own baked bread. She gets it!. Seriously in my mind, a Subaru was what she was going to be driving and I was only praying that lunch would not be KFC or Applebee's..it was exactly what I had hoped.

Now if you know me you know that I love a good ice cream. So when I heard I was coming this way, Ben and Jerry's immediately came to mind. It got out at NACFC this month that I love Ben and Jerry's and I was promised a pint at last nights talk.

Promises Promises...Kathy drove 1.5 hours with this pint of Fish Food in a cooler on ice. It was delicious and made my night, even if it was more like a milkshake. Yummmy!

The Ben and Jerry's theme continued on as I was presented this shirt from Lynn when she announced me. I draped it on the podium just to see if I could maybe score a sponsorship.

150 people showed up last night which is just a remarkable testament to this clinic. I have never seen this many people at a family night and it just really energized me and got me excited. I felt incredible during my talk and was super excited to share my story and the "Blue Lighting" stats...when I was talking about how shitty I felt last month when I was sick and how quickly I turned around once I start back on BL I got a little choked up. A 70% increase in my PFT's in 1 week. Amazing!

To be able to share this info with these parents, patients and families is something that is hard to describe. There is nothing better than to see their faces fill with hope and smiles. So cool! It was great to connect with some young teens who admitted to me that they were not being super compliant. I tried to be as honest as I could with them and tell them how important these meds are. I even bumped elbows with one new friend and this serves as our pinky swear that she would do her treatments.

Ok this pic is amazing. When the program ended these three gals came over not only to chat BUT to invite me to their dairy farms. I saw pics of their cows & the farm and got to know a little bit about dairy farming. I'm still trying to figure out how these 3 have 2 dairy farms but they do and they are cool! I plan to come out this way in July for the Seacoast Safari bike ride so hopefully I can get up and meet some cows!

Highlight of the night was when on stage, the docs and other folks were calling VX-770/Kalydeco "Blue Lightining" without any hesitation. Serisously...we are on to something and I WILL make sure we get this name changed! Picture it, we won't even need the words..You doc will just stamp a blue lightning bolt on your RX pad.

Until next time!

Em

Blue Lightning

(It ain't easy wearing two ribbons..just wait until next year.)

So I have finally recovered from NACFC 2011. It always takes about 2 full days of sleep to do this..late nights and early mornings! I spent all of last week and this weekend in Anahiem, CA speaking, going to meetings, presentations, hanging with old friends and meeting some incredible people.

To make it easy I'm just going to list a few of the highlights and some pics to sum this trip up;

* Speaking for the Clinical Trials A-Z Short Course was so fun and it taught me a lot..like how to run a roundtable discussion!

* Presenting my view on how to Keep the In Patient and Out Patient CF teams in the loop..and some of my frustrations with Cross Contamination.

Being able to hang with my friend Kat from the Blooming Rose Foundation: Quack..Quack..Quack..

* Meeting my CF doc for a 6:30 am workout.

$17 cab ride to the nearest In N Out for a Neopolitan shake and a veggie.

Hanging with Dr. Pat Sosnay..you can't quite tell but this is me on his shoulders during Journey:

Dinner and fun with old friends Steve and Carol..or is it Carol and Steve?

* Meeting the Blue Lightning crew..including the chemists who discovered it! I really think we can get the FDA to change the name...

* Meeting 1 of the stars of The Power of Two, Isa Stenzel Byrnes and also Tiffany Christensen.

This:

Hanging with these two friends a lot:

Finally, being able to see my buddies and heroes who work tirelessly for the CFF including, Bob Beall, Rich Mattingly, Preston Campbell, Marybeth, Elise, Mary Dwight, Jason, Cynthia, Deann and the entire crew that put on this amazing conference! Thank you for doing what you do!

There was this buzz of excitement the entire week that is super hard to explain. I know that it is stemming from Kalydeco/Blue Lightning and the future of treating the basic defect in CF. This excitement definitely carried out onto the dance floor Saturday night because I must say there was some major improvement in the dancing this year.

This is the John Hopkins crew after the dance..I was supposed to be the topper but row two & three couldn't hold on! It was a valiant effort but we will get it next year...next year, my friends.

This is always one of the best weeks of my life and I cannot wait until next year!

Em

Here is the video short for CFLiving.com that I shot in Idaho..no you da ho! It features some more of my amazing CF friends as well!

Video Short #3- Treatment Regimens: How CF Treatments Work and Fit into Your Routine

Now online! Knowing how your CF treatments work and finding a routine is important in your CF management. Watch http://bit.ly/oVuaFR to check out a Video Short where CF patients, experts and caregivers discuss how time management is crucial and how they stay motivated to make their health a priority. The video features Ronnie Sharpe, CF patient and author of RunSickBoyRun.com, and wife Amanda, who are founders of CysticLife.org; Isabel Stenzel Byrnes, CF patient, social worker and co-author of The Power of Two: A Twin Triumph of Cystic Fibrosis; Emily Schaller, CF patient and Founder/President of The Rock CF Foundation; LaCrecia Britton, CF Coordinator, RN and CPNP. The stories in this third installment of the CF Community Video Short series may help you to better understand how your CF treatments work and how you can fit treatment into your daily schedule.

Where is my form?

After sitting my ass on couches, chairs and hospital beds for 3 weeks, I decided it was time to lace up and hit the roads. I got out of the joint one week ago and have been giving myself home IV's which allows me to try and get back to my routine.

Monday I went for a cool morning 3 mile jog. Tuesday night I did a little slow flow and this morning I ran 4 miles. Before I came down with these infections I was starting to ramp up my miles and was hitting yoga a few days a week. This cold or squirrel flu hits at the end of September and I'm on the couch with no plans for anything strenuous. The migration to my lungs firmed that up pretty good and as hard as it was to not even look at my running shoes, I did it. I actually rested!

The 3 and 4 mile runs I did this week were not my prettiest. My legs, ass and body are a little weak and I felt like I was running for the first time. The lungs feel WAY better than before but they need to be kicked into shape as well. I tried not to push it on these runs by walking when I needed to and limiting my mileage as best as I can. I'll continue the every other day running plan and build up nice and slow to avoid the injuries that my old lady brittle bones are prone to.

In a couple weeks I will be in Anaheim, CA at the North American CF Conference for 6 days. 70 degrees and sunny is calling my name and setting up some nice running weather. My 6min/mile CF doc and I are planning to run together out there...that should be real cute! If I just make sure he has a few too many cocktails the night before I may be ok...

Here is what I am most excited to report today. On Thursday I went to CF clinic. After 6 blows, my PFT's are back to my new high normal, my weight is coming back annnnnnd guess what. When I cough, run or cough while running I don't pee anymore!! This is incredible news and I get to stop IV's a week earlier than originally prescribed. Boooom.

My life is a stage...or a seat in the theatre.

So I love Broadway..laugh it up all you want but there is nothing that makes me happier. Broadway and theatre is pure magic! Since my uncles have lived in NYC my whole life I have been very lucky to see a ton of shows. I'm going to use this post not only to show you what I've seen, but to also help ME remember what the hell I have seen.

*=Em's Top Picks!

1993

The Who's Tommy *

1994

Beauty and the Beast

1997

SIDE SHOW*** (#1 musical of all time!)

The Lion King*

The Scarlet Pimpernel

Jekyll & Hyde

1998

Footloose

Cabaret

Rent

Les Miserable

1999

Amadeus

Annie Get Your Gun

Kiss Me, Kate

Saturday Night Fever

Miss Saigon

2000

Aida

James Joyce's the Dead

The Full Monty

The Rocky Horror Show

2001

42nd Street

The Producers

Mamma Mia!

Urinetown

2002

Flower Drum Song

Hairspray *

Oklahoma

The Graduate

Thoroughly Modern Milly

2003

Little Shop of Horrors

Take Me Out

Wicked *

2004

La Cage aux Folles

2005

The Color Purple **

Dirty Rotten Scoundrels

The 25th Annual Putnam County Spelling Bee

2006

A Chorus Line

Company

The Apple Tree

The Wedding Singer

2007

Xanadu

The Drowsy Chaperone

Young Frankenstein

2008

Gypsy

2009

next to normal *

West Side Story

The 39 Steps

South Pacific

2010

American Idiot

La Cage aux Folles*

Promises, Promises

2011

Anything Goes

How to Succeed in Business Without Really Trying

Priscilla, Queen of the Desert

Sister Act

The Book of Mormon**

B'Way Touring Productions

You're a Good Man Charlie Brown (Preview in Detroit)

Martin Guerre (Tour in Detroit)

A Bronx Tale

Twelve Angry Men

Legally Blonde

Avenue Q

Spamalot

Chicago

Sweeny Todd

Sweet Charity

Fiddler on the Roof

Movin' Out

Ragtime

Guys and Dolls

Here are a few of my rules when going to the theatre. This may sound silly but I have experience ALL of these things at my last 4 shows and it kills me.

1)Do not bring that damn drink with ice inside, these are real people on stage and they can hear you drinking, shaking ice and you sucking that last damn drop out with your straw. STOP!

2) It's not a movie and there are NO previews , so get there early. Sit down and act like a real person.

3) Shut your damn phone off.

4)Do not talk.

I know that you can survive for 2.5 hours without eating, drinking and using your phone. If I can do it, you can too. Man I sound like a bitch but 1 person can ruin the night for thousands of people who paid big bucks for these tickets. R-E-S-P-E-C-T!

Now go see a Broadway show people!

Jump On It

Sir-Mix-A-Lot's "Jump On It" was in my head when I woke up today. I got outta the joint yesterday and I'm ready to rock. My only complaint with this song is that he totally leaves Detroit off the train. Tacoma? Tampa? Kansas City? Columbus? Little Rock? These cities but no Detroit? This song would have much more street cred if he made a stop in Deetroit.

6 days on 6C and I'm feeling so much better. I went in feeling the worst I have ever felt before and actually a little scared. I'll admit it. My mind was racing for a few days there because I thought maybe I was culturing some new and scary. I wasn't eating and lost almost 2 pounds a day in there. Fevers on and off until Thursday and a lot of lying down was not my typical stay.

I was dealing with 3 different docs who at one time all told me something different which was not helping. Of course they wanted me on IV Tobra but I pushed really hard against it because A) My vestibular damage was most likely caused by that. B) I wanted them to make sure that they looked at my newest cultures to see what IV's would actually work. C) My vestibular damage was most likely caused by that.

On day 2 I was able to get in and get my vestibular/balance testing done. If you are bored and looking for fun I suggest you get in for that test. Cold & hot water squirting into each ear, a spinning chair in the dark, eye goggles and cameras and so much more! A verrrry fun 2 hours.

The tests did show one sided vestibular damage. One sided is ok because in most cases it can be corrected with symptoms not lasting forever. PTL.

Breaking news came in from my research nurse after my testing: "Go ahead and take the Blue Pill after dinner tonight." Everyone in my room threw their arms up and cheered! I knew this would be key in my come back. I downed that baby as proud as a mama who just had a baby! Wednesday we started a new IV med and luckily I do not have to be on Tobra because my cultures showed it would not work...some relief there!

It was sad to leave my crew up on 6C yesterday but we made some good memories. Toe squats, pull ups on my door and sooo much more that needs to stay up there.

I'm happy to report that my lungs are already on the fast track to awesome. The combo of the new IV med and the blue pill is just what this doctor ordered. Now there's only one thing missing from my day.....exercise! I'll fired that up "slowly" this week don't you worry!

(Somer sent me these labels from one of my fave brews with a note "use your imagination.." Yesterday I had 2 with breakfast..)

Here's the deal..

It's going to be 80 degrees today, it's October. Now we all know that's not right, right?

Other things that are not right? Nolan Ryan looking real old, the Duchess of Alba, María del Rosario Cayetana Alfonsa Victoria Eugenia Francisca Fitz-James Stuart y de Silva getting married and me going into U of M/club med tomorrow to start IV antibiotics. Why am I going back in after just having them in August? My lung function is in the toilet. When I say toilet I mean seriously, I just about shat when I saw what my PFT's were on Friday. But why? Read below..

Last week I came down with what I thought was a cold/sinus infection type deal. I started on Cipro (yeah the same stuff for Anthrax) on Tuesday and thought I was on the mend on Thursday. On Friday I headed to NYC for a little vacay and speaking engagement but started to feel pretty winded and was coughing more on Sunday. As any noble CF'er would do I shrugged it off thinking the Cipro will take care of this for sure. I don't have time to be "sick!" After seeing a record 5 shows in 4 days, and hanging in the city with my brother, sis n law, uncles and friends I knew that things were not good. My lungs and sides hurt, I was winded and coughing anytime I would go out. What I would usually walk, I took the train or bus.

Tuesday night I spoke at the Research Update for the NYC chapters of the CFF and felt great for the 2 hours I was there. Because I am delivering such great news about VX-770/blue pill, my mind really gets into it and I forget that I actually do feel like shit.

In the past two months I have seen my pulmonary function at the highest I remember seeing it and then on Friday at the lowest I have seen it. I've felt the best ever, running 5 miles, biking 30 a day and yoga 4-5 days a week. This week my lungs and back hurt, I'm coughing up some crazy junk and the thought of running 1 mile is making me tired. Also I dropped about 5 pounds and eating is not something I want to do..this is a HUGE change because I normally want to eat everything and anything (healthy ;) all day long. I have seen the best and worst of my health in 1 month and have seen it slowly spiral..know what's keeping me together? My family and friends. Staying positive, laughing and not making this my main focus.

Of course I could be super pissed about this because I know that I've been off of the little blue pill for a month and my body doesn't really like that. Also I'm sure I wouldn't be writing this post if I were still on my blue buddy. So I did spend a few frustrating minutes this weekend swearing..actually a lot but that doesn't really matter...I was just reciting every word that my uncles taught me.

Everything happens for a reason and focusing only on positive things is what I need. My main focus is getting healthy and ready to start training for a spring half marathon and maybe even a fall half iron man (minus the swimming..I'm a Pisces but I hate swimming.) as soon as I am released from that place.

Tonight I will watch the Tigers take down Texas and the tomorrow I will watch the Lions handle da Bears on Monday Night Football!

Em

Spoiler Alert

This morning as I hacked, spit, peed, and swallowed thick air on my 4 mile run, I realized how spoiled I have been the past 21 months. The little "blue pill" has completely changed my life to the point where I don't really cough at all, I can take deep breaths without needing to cough after and my lungs feel so clear. My skin is way less salty when I exercise too and I generally feel as though I now live with extremely different case of CF.

Since being temporarily taken off the blue pill for the last 2 weeks, I have seen a change. This change was almost as fast as when I started on the trial for this drug. 4 days into the trial I knew this pill was working. I could BREATHE! My deep cough came to a halt, no mucus was even in there and I lost my sexy raspy CF voice. Well, about a week of being off this pill my "old CF" has started creeping back in. My voice is raspy, I am coughing more and bringing up some lovely oysters, and most importantly, I forgot how much easier running is when I am on my little blue.

Most CF ladies can relate to this problem too, coughing and peeing! This is something I haven't done for the past 21 months but before that I would have to only run in black shorts or pants because I would cough so much on a run that I would end with some wet as pants. "You aint coool unless you pee yo pants!" Well today it's a good thing I wore black shorts because I was cool!

What's gonna be is gonna be. Hopefully I can get back on soon after I get all ENT appointmented out in October. Until then I'm going to run and yoga my ass off like I always do to keep these pink lungs healthy!

Smoothie Moves Sunday

I woke up this am asking myself, "what do you eat for breakfast when your full up to your gills and know that in 4 house you'll be pounding 4 liters of Golytely?" Most people would say ummm...."Nothing!!" I of course cannot. A girls gotta eat something, especially because I plan to knock a few miles out this am and need some energy.

My Super Smooth Banana Smoothie is what I went with.

Here's the recipe:

1 Frozen banana

1/2 Cup 2% Fage Greek Yogurt

1 Tbsp Ground Flax Seed

1'ish Tbsp Organic Almond Butter w/ Flax

1 tsp Honey

1/3 Cup Unsweetened Almond Milk

Chef's Note: This smoothie taste better if it is consumed from a Polygamy Porter pint glass.

Blend that baby till it's smoove and drink!

On the stove today I'll be cooking up a 17 Bean & Barley Veggie soup! I should be able to enjoy this later in the evening once I am clean as a whistle and 5 pounds lighter. AND celebrating a Lions win over the Vikings.

Dizzy Day 19..an explanation

Here's the deal. I have not been myself for 18 days and I just wanted to lay out the details for lack of confusion because trust me, I am confused...more than usual.

Symptoms:

Blurred vision/problems focusing on TV 2 weeks before bike ride.

Killer headache on hot 65 mile bike ride September 2.

Dizzy-like and blurry vision the day after ride.

Feel like a bobble-head.

What to do?

Call CF Team after 6 days of constant dizzy/bobblehead/eye focusing problems, September 8

Sent me to ER for testing. MRI to rule out blood clots on the brain cause by exertion in heat.

No clots = Now I can sleep..and go home with eye appt.

Plot Thickens:

August I was on 3 weeks of the IV antibiotics ceftazadime and tobramycin.

If you know your drugs, you know that tobra can cause toxic reactions to structures of the inner ear.

I have been inhaling TOBI for 15 years and getting it through IV's for 16. No problems to date.

Even Thicker:

1 week into my IV's I noticed some ringing in my right ear.

Call CF team to see what we should do but we decided to continue since it didn't happen after the other doses and because I still had 2 weeks left.

Also the Cicada's were buzzing that night so I just blamed those suckers.

Rest of the tune up went well but I did notice some plugged feeling in my right ear a week after IV's.

Craziness Starts:

2 after last day of IV's above symptoms start from the second I wake up to the second I go to bed.

Not true dizziness or lightheadedness, but it's something I cannot explain.

Walking makes it worse because it feels like my brain and eyes are bouncing up and down.

My eyes cannot focus at all when walking and I can't even tell if someone is walking/running/riding a bike towards me or away from me.

This of course makes me feel like I'm seasick and nauseous too.

So what the hell is this?

My thoughts all along:

Inner ear situation caused by the IV tobra.

Had to beg ER docs to look in my ears.

They wanted the clots..I know it! "is it lupus??"

Asked docs if I should also see an ENT...apparently not.

Sent home with eye appt.

20/40 vision..better than perfect eyes.

Now what?

Temporarily stopping the Magical Blue Pill clinical trial that I'm on.

Day 11 no pill= Old CF is coming back slowly to lungs.

Cannot start until I see an ENT to get a diagnosis and cause.

We have to make certain the clinical trial drug is not causing this.

My diagnosis guess?

Labarynthitis.

My Treatment so far?

2 doses of Antivert that made my symptoms 10 times worse and feel like a crackhead.

Running...even more challenging when you can't see street signs or cracks in the road.

Yoga...balance poses aren't my friend right now but you should see my downward dawg!

Forgetting that this is even happening.

Now you are up to speed!

Very awesome video!

Back in April I was able to join my great friend Somer, CF mama Kat, Ali and Christina Christensen and the crew in Idaho for a video short project. This was a shoot for our buddies at Genentech who host the CF Living site (www.CFLIving.com).

The first video launched a couple months ago and now video #2 is up and running. The video that I am in will be hitting your computer screen shortly..in the meantime though check out the video below:

Now online! Living with cystic fibrosis means making time to fit your treatments into your busy schedule. Now on http://bit.ly/qCFQGQ, you can check out a Video Short in which CF patients, experts and caregivers discuss the importance of establishing a routine and understanding how your daily treatments work to help keep you healthy. The video features Lisa Greene, certified parent coach, educator, and co-author of Parenting Children with Health Issues; Dr. Foster Cline, child psychiatrist, co-founder of the Love & Logic® Institute and co-author of Parenting Children with Health Issues; America’s Got Talent finalists, Ali and Christina Christensen, and their parents; Kat Quinn East, CF parent and founder of the Blooming Rose Foundation; and Somer Love, an adult with CF and author of the blog, Love to Breathe. The stories in this second installment of the CF Community Video Short series may help you to find new ways to motivate your kids to adhere to their treatments and instill the power of choice.

Side Note: I just did a run in the dark. Last night I did a hot ass hard yoga class and the day before that I ran 5.75 miles. There is only one way to beat this inner ear situation and that is to forget it's there!

Slack Attack

This weekend is supposed to kick off my Cycle For Life tour. I am signed up to ride in these new CFF events in 4 cities starting this weekend in Holland, MI. (Isn't that veird?) I am super excited about these events because they are bringing a whole new group of people in the CF fight with us while doing something that I really love to do..RIDE!

Since I haven't been on a bike in 13 days because even walking makes me feel seasick, there is a very slim chance that I'll be able to get out to ride this weekend. L-A-M-E! I am going to attempt to get on the bike today....this could be a complete disaster or a great laugh for the spectators. Road ID will be strapped on tight.

Next weekend I am supposed to ride in Dayton, OH on Saturday and then in Chicago on Sunday, then October 8 in Madison, WI....hmmm these all involve driving to get there and well I can't really do that either! Score.

So right now I am in a holding pattern and I am starting to feel like a dork because I don't want to let any of these rides down. Of course I have been slacking on my $150 fundraising goal for each ride because honestly I feel that I am tapped out. All year long I am asking for money for this or for that. When I call my one uncle he says "uh oh...you must have you hand out again, asking for money!"

Even though I may not be riding in any of these rides I still would like to raise some money for them. Below are links to donate..Maybe I can get some quick $5 donations here..100 of them? I feel a little like Oliver when he is asking for more porridge..Please sir can I have some more?...morrrrre????

I've made it super easy for you to donate..Just click on the city below that you feel deserves your donation and it will take you right to the donation page for that city's ride.

Thank you for the constant support. The CFF is the reason I am alive to day..walking sideways, but I am here.

Em

Better than Perfect?

Can you please say that again doc? "Better than perfect?" Now of course I have heard those 3 words countless times before, maybe not referring to me but when I do hear them I think..oh they must be talking about me.then I smile.

Yesterday after my eyes were tested, eye dropped, poked and blurred, the doctor told me that my eyes are "better than perfect!" 20/15 vision and one hell of an optic nerve! This is of course very good news. It makes me feel that 30 isn't going to be so scary. A few gray hairs? I can dig that..nothing a little work from my hair stylist can't fix. But it also means that I don't need glasses, yet..

So am I still feeling crazy and not really together? Do I fall over, get nauseous, squint, feel like I'm a walking bobble head? Yep! I did a lot of research the night before last to try and get to the bottom of this because deep inside I know it is not my eyes causing this. After a good hour of really digging I came upon something. Let me just say I will bet my car, Vespa and road bike on what I think it is. All of the main symptoms hit along with the "a dizziness that you can't really describe," "feeling it the second you wake up until the second you go to sleep," and many more.

I will not reveal what I think it is until I talk it over with my doc. All I'm saying is that the dr.'s in the ER and on the floor didn't even look in my ears until I made them. I even asked about setting up an ENT appt but they bawked at that and said EYES!

Oh and once we confirm that this stuff is not a side effect from the clinical trial blue bill drug I can start back on it. I've been off of the drug a few days because we need to make certain that it is not the cause of my weird symptoms.

Stay tuned for the big reveal. Here's a hint..it may or may not have to do with David Bowie!

How on earth?

I don't know how people do it. I'm rounding out day 6 with no running, cycling, yoga, soccer or anything. Two words: going crazy.

Six years ago this would have never come out of my mouth. I was eating spicy chicken sandwiches from Wendy's, sacks o ten from White Castle, drinking Coke and the only exercise I would be getting is a run to the car in a rainstorm. Since my "lifestyle change" a few years ago (that just sounds ridiculous), exercise has become not only a part of who I am but also a very important part of what is keeping me ticking.

Addicted? I wouldn't quite go that far. A priority? Yes, especially since I have some big bike rides in the next few weeks and I'm also hoping for a spring half marathon. Add yoga 4-5 times a week to my running and riding and you can understand why doing NOTHING for 6 days is killin me.

My brother tells my mom to cripple me so I don't go do something dumb. Oh driving in the rain when I can't see or read street signs isn't good? My bad! Reebs said she is going to tie me to my chair and shove relaxing pills down my throat. Sounds terrible!

Hopefully I will know more Wednesday..if I get the go ahead and I can actually see then I'm going on a long ass ride.

Headcheck..30

Ok so today I'm going on day 7 of blurry vision, headache and a bobble head type feeling. A couple of weeks ago my eyes started feeling a little weird; like when I would sit down to watch TV I would have to squint to focus. Running, biking and yoga? A danger to my health!

I'm turning 30 in February so I thought this was just part of the gig. Gray hair, glasses, miralax, prune juice...

I got a really bad headache during a 65 mile really tough ride my friends and I busted out last week on the one last extremely hot day. When I woke up the next day my eyes were blurry, my head hurt and my head feels like it's floating and my eyes can't focus. This is constant from the minute I wake up until I fall asleep.

So finally after 5 days I decided to call my doc and tell him what's up. He sent me right to the U of M ER to get check out. (Side note: my TV is on right now and as I typed "U of M" a U of M doc popped up on the Today show. That's my life.) The ER docs I'm sure immediately thought vertigo but after checking me out and performing a few fun tests, everything nuero wise and vertigo wise was negative. They were puzzled but scheduled an MRI of my head & veins to make sure there were no clots that could have formed during the hot bike ride. That was a really refreshing thought that I had to sit with all night while I waited for the MRI. Turns out the MRI was totally clear. I was released from my friends on 6C yesterday with an appt with the eye doc for Wednesday to see if the muscles around my eyes have weakening. Remember the kids who wore eye patches under their glasses in kindergarten? Yeah....this is what I'm picturing!

Are glasses in my future? If so, here is what I'm thinking:

Here's a fun story from the ER. When I was taken in to triage the nurse sat down and looked at me funny. She then said "You look really familiar..." I asked a few questions then asked "Do you run?" Maybe she did my race in March..? Immediately she turns bright red and starts crying and saying "Oh my lord! My husband and I are such big fans of yours. I'm going to turn red...we have followed your story since the Runner's World Article and the Dexter race. Can I call my husband and tell him I met you??" She was great! This was my first run in with a "fan" and when she took my BP, it was actually in triple digits for once! Of course I gave her a couple cards for the next race in March..I hope they make it out!

I'll update on my eyes/head after I see the eye guy!

Bloggin It Out Once Again. All A.D.D. All the Time.

Ok so I took two years off..what's the big deal? I am liking the idea of keeping this blog and the Rock CF blog www.letsrockcf.org/blog separate. Kind of like the separation of Church and State. It's a good thing!

Nutrition is a huge part of my life. With CF I really have to make sure I'm getting enough calories. This is especially true because I'm training so much for runs and cycle tours. My calories today are for the most part very good and clean and come from whole foods. Drastically different from the Emily 5 years ago, I try to avoid processed crap and HFCS as much as possible. Here's a taste of what I just had for breakfast:

Smoothie made with GoodBelly Mango probiotic drink(more on GB later) , plain kefir, frozen organic triple berry medley, ground flax seed and fresh organic kale.

2 Egg Omelet with red onion, sautéed spinach and diced tomatoes.

I know this doesn't sound like a huge breakfast but here's the deal. I find that if I eat smaller meals every 2 to 3 hours it really helps keep DIOS/blockages away a little bit longer. Because my digestive system is like a clogged drain I have really found what works best for me.

I am OCD about breakfast and always make it my best meal of the day. 95% of the time my breakfast starts with an oatmeal base where I then top it with fruits, almond milk, yogurts, nuts honey.. etc.

Eat well and be well!

Em