And for Christmas this year.....I get.....

A couple of weeks ago I came down with that cold I posted about. After a couple days of those antibiotics I thought I had this mo fo under control and on its' way out. Things changed after 1 week of being on those meds though. Apparently my body was like "oh you know didn't!" and decided to react in a not awesome way to them. I started to feel like I had the flu. My whole body ached, I had the chills, my joints killed and my nose started to get full. Also my cough started back up. I did a little research and saw that these symptoms were side effects of both meds so my doc and I decided to hold them to see if things improved. Twelve hours after stopping them I started to feel so much better, and by the second day I felt great...except for this cough.

Fast forward to Friday night and Saturday...this cough has gotten much much much worse. It's a cough that my family and close friends have not heard in years, since before starting Kalydeco/Blue Lightning really. Not only is the cough bad, but my sides and chest hurt, you can hear crackles when I breath and I've been sleeping twelve hours a night. So unlike me.

So, how? "How can you still get a lung infection now that you're taking Blue Lightning?" my best friend asked this week. It's a very valid question that I'm sure a lot of others wonder too. Kalydeco is not a cure. Sure it treats the underlying cause of CF and helps my CFTR protein function better to alleviate my symptoms, but it does not cure CF. My friends and family have seen the very best ever of me over the past two years thanks to Kalydeco. (and exercising and eating well :) ) No coughing for the first year and a half straight,  PFT's that I had never seen before and listening to my speeches saying how "I have never in my life felt better than I do now."

But I still have CF. I still culture pseudomonas, and those buggers can still work really hard together to turn into an infection. This infection is really testing me though, and seems like it hit harder than the infections I've had in the past when I wasn't on Blue Lightning.

Last night I was talking on the phone with my best Ute friend Somer who said, "Oh mannn can't you just wait until after Christmas?" I then started to cough and she quickly replied, "Nope! You're going in tomorrow..." It's now Christmas Eve and I am heading into the U to get things started. My doctor was on call last night and has everything lined up for when I get in there. Hopefully we can get the desensitization going today and get things working.

Spending Christmas in the hospital is not new for me or all of my CF friends. It's what we do to get better. We used to strategically plan the stays so they would fall over Christmas break. I expected them. This ordeal is more unexpected and well, annoying. I have been looking forward to seeing my nieces on Christmas Eve and morning, especially seeing Kacey have a stroke when she gets that damn Dodge Charger Police Car we got for her.  Hopefully someone will capture this magic on video for me!

I did score an incredible Christmas sweater from a friend this week that I plan to wear tomorrow at the hospital. It definitely has three dogs on it and two are wearing gold chains....so that's enough to make you go cray!

3...when were you diagnosed...and 4

Ok funniest work out moment happened this morning, you may not laugh but it was kind of like an SNL skit.

I hit the early morning weight class with Armstrong today. This is a popular class with the older crowd, but don't be fooled, the 84 year old woman has a tighter body than most 20 year olds and the other silver fox has arms larger than my legs. This is no joke.

There is a little portion of that class that takes us to the wall for some wall sits, the kind of sits that don't end and your legs feel like they could catch on fire. Luckily Armstrong I deal with this pain by looking at each other and laughing..it really helps.

Well today...today was hilarious. I was wearing the "Train. Breathe. Out Run CF" shirt. As we were walking over to the wall next to take a squat, our very nice instructor read my shirt. Just as my legs started to burn she asked what CF was...and then the conversation continued like this:

Instructor: "Do you know someone with CF?"
Me: "I know someone very well."I say settling into my square
Instructor: "Who?" she asked as my right leg started to shake.
Me: "Me" I pointed to myself with the dumbell as I raised it up for a curl.
Instructor: "You have CF? and 2..and 3..."
Me: "Yep I do!"
Instructor: "And 4...when were you diagnosed? and 5..."
Me: "18 Months old...1983." By this time my I was ready to not be squatting anymore.
Instructor: "Wow" and hold the squat..."Are you a doctor..6, 7, 8.."
Me: "I wish..."

Mind you..She is wearing a headset mic while teaching so that everyone in the gym can hear her. So, as she is instructing people on what to do, and counting, she is asking me these questions out of the opposite side of her mouth. It was hilarious!!!

Good start to the day..

Kale Power Celebration

*Go ahead and click that picture above to see the Top 10 Benefits of Eating Kale*

That leafy green stuff is good..and it is damn good for you so you should eat it! This week I've been on quite a kick and above is one of the most delicious ways I have ever had it.

Attention CF circle, kale could be really great for us: Kale is loaded with Vitamin A, K (2 vitamins we already take more of), has more calcium per calorie than milk (osteopenia/osteoperosis?), high in fiber (you know...), great anti-inflammatory ..the list goes on, just click the pic.

Here is what's in that picture above: Kale salad (see recipe below) with a diced baked sweet potato, tasty red lentils in a fab sauce (see recipe), a KBC pumpkin ale, my fruit bowl..and a leg lamp nightlight. Oh..and of course my Nook that is in the process of cleaning my Altera nebs.

Kale Salad- Adapted from the December Whole Living Magazine recipe.

 Now called Em's Super Kale and Sweet Potato Salad

Makes 2 Servings

To be honest..when I make up my own stuff I don't measure. So what listed below is just me guessing.

Bake 2 small or 1 large sweet potato(es) in oven (375 for 35 minutes or so..ish, maybe)

When done, let cool and dice

For Kale Salad

Couple cups of diced Kale

3-4 Tbsp Olive Oil

1 tsp Crushed Garlic

 Pinch Red pepper flakes

 Salt to taste 

Pepper to taste

 1/2 of a Lemon juiced

Fresh grated Parmesan Cheese

Mix Olive oil,  garlic, red pepper flakes, salt, pepper and lemon in bowl. Pour over kale. Add parmesan cheese. Let sit for at least 30 minutes before eat.

Red Lentils- Recipe on the back of the Trader Joe's Red Lentil Bag

1 Cup red split lentils

2-1/4 broth (I use veggie)

1/4 white vermouth (I used some Charles Shaw Shiraz)

1 tsp. red pepper flakes, or to taste

1 tsp. black pepper

Everyday Seasoning Salt to taste (Sea salt in my world)

1 tbsp. olive oil

Heat oil in pan; add lentils, toss to coat; about 1 minute. Add broth, wine and seasoning. Cover with a lid and simmer over low heat until tender and the liquids almost absorbed, about 12 minutes. 

More Kale Ideas

- Kale Chips

- Blend into your favorite smoothie with a frozen banana, almond butter, or frozen berries, yogurt, kefir etc..

- Soup it up!

That's all I got for now...eat well and be happy!

Love Part Deux

Ok so my "I love you" brother called me last night to clarify some things after he read the Love post. He wanted to tell me a little story about how those 3 words won him his beautiful wife.

When he was working at his old department, his now wife was working there too. She was a cute gal that was charmed right away by my brothers humor and niceness. One day before they even were dating she heard him on the phone with someone. When she heard him end the call with "I love you babe" she thought "Oh shit..he's got a girlfriend!" Boooooo...

What she didn't know was that on the other line was...ME! When she found this out she was relieved and totally in love with him. What a nice caring guy who talks to his sister that way....<Insert the "awwwwww" audience track from Saved By The Bell>

So there it is..the "I love you" wins again!

Oh and I am overwhelmed with the I love you's on Facebook, texts and even a love note written on a Trader Joe's receipt stuck on my windshield after yoga.

I...luvu.

Em

I love you so much!

"I love you" is not a phrase that my family voiced very often when I was growing up. Don't get me wrong, my family is so tight and we love each other more than can be put into words, but we just never really said "those 3 words" to each other. We just knew!

My best friends Reebs and Steph say it to each other, their oldest sister Linds and their mom at the end of every phone call or when they leave each others house...mind boggling! I didn't know what to think when I first heard these words being thrown around so much about 10 years ago when we first started hanging out.

In my early 20's my brother older brother Adam started throwing this phrase around when he would end our phone calls. He is the cop, wrestler, football, Styx singing guy, so this also blew my mind.  Eventually the "I love you's" spread on to my parents from my brother and I would hear my dad saying it back to my bro before hanging up. My uncles in NYC started sneaking it into our phone conversations and my dad is saying it more too....What is happening with all this Love?

I'm at the point where I can type and email or sign birthday cards that end with "I love you," no problem whatsoever. It's the end of a phone call when I have to respond the my brother or my dad's 3 words..I get flustered and muster out a quick "Love you too!' Those two words just seem much easier to say than those three for some reason. 

This weekend I was able to spend Thanksgiving with my folks, brother, sis n law and two nieces. My other bro and sis n law were in Cali..missed them big time.! Here's the deal. My 3 year old niece K has no problem throwing these three word around and I have absolutely no problem saying them back to her.

When she was supposed to be napping on Friday she called down for me. I went up there and she asked me to lay with her, so I did for a few minutes hoping that would do the trick. While lying there facing each other she put her little arm around me and gave me a big squeeze. She said "My best friend...I love yo soooo much Ellily!" This was the cutest and one of the most amazing moments in my life. I responded with "I love you!" and she said "I love you more!" If this totally cute and innocent 3 year old can throw these three words around so easily, why can't I?

I did talk about this with a friend last week who has the exact same problem that I have. He grew up never saying it and now is married to someone who says it all the time, this is a life changer. He says he is learning to use it more and showers his sons with the words all the time.. At least I'm not in this boat alone!

So here is to learning how to say these three words without clamming up and mumbling out "luvutwo.."

I. Love. You.

Em

Finisher But Never Finished...

Isn't this shirt sweet? I saw the (re)vici booth at the Beach2Battleship race expo and knew that these guys were pumping out some sweet products. When I spoke with the master minds behind this company I realized right away that they "get it." Cool gear that people want to wear beyond race day or  race weekend..this is something that I'm focused on doing with Rock CF and the Rock CF Rivers races.

When I first eyed the Finisher But Never Finished shirts the phrase immediately resonated with me.   I of course had to get one of these shirts and ended up with the dark charcoal gray color that I wore the day after I Finished the big race.

Even though I bought it before I actually finished my first half iron distance, that didn't matter. Having finished 7 half marathons, tons of other 5k's & 10k's, 300+ mile bike rides from Detroit to Chicago or D.C. to Pittsburgh, all of these allowed me the right to wear this, right?...BUT  Finisher But Never Finished goes beyond the road I run on or the bike journeys I take. It summarizes my whole life, and really anyone else who lives with a chronic or illness. We fight battles large and small, come out on top and cross that finish line (sometimes crawling through), but there will always be more fighting. We go into the hospital to treat lung infections, have surgeries or procedures, and we come out a finisher...but we are not finished.

There will be a day when we are all Finished (thank you Blue Lightning for helping to give my expiration date a little boost) but until then we all will continue to be Finishers in our everyday battles!

I suggest you head over to read about this awesome company..and maybe pick up a shirt or two!

Em