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