Tuesday, July 22, 2014

Swimming In The Rain

I went swimming in the rain last week. And no, not in a drizzle, when it was really raining. My girls and I were holed up in the house during a typical South Florida summertime storm when suddenly I  noticed the thunder and lightning had stopped.


"Girls let's go swimming." They looked at me like I had lost my mind, and then their shocked looks changed to wide eyes and jaws dropped!

We were outside and in our pool in minutes. Yes this was fun because it took me back to being a kid, but it was also fun because I just put on my suit and jumped in! No long sleeved swim shirt, no baseball cap and gasp... No sunscreen. It was liberating. I know you can still get UV exposure...sometimes more on a cloudy day...but it was raining hard, the skies were dark so I took a chance, and I'm so glad I did.

Without a baseball cap I swam under the water. We played mermaids and Olympics. We jumped in and did piggyback rides. I wasn't hiding my hands under the water or sticking to one side of the pool to stay out of the sun. I wasn't  checking my hands every few minutes to see if I was flaring. I just played. Carefree. I had fun. So much fun. And there's nothing my kids (and I think all kids) love more than TRULY playing with their parents. I wasn't just in the pool or outside with them, I was playing with them. And it was awesome.

Friday, May 23, 2014

Captain Caaaaaveman (or woman)

"Mommy is that organic?"

OK now say it in your best 4 year old voice and it's much funnier!

 My kids know we eat a certain way at our house. Sometimes they like it, sometimes they don't. It's not like they can taste the difference between clean foods and processed ones (even though I totally can), but already at their young age they have associated healthy eating with boring eating. It truly is sad and unfortunate. They think the Cheetos and Lunchables in their friends' lunch boxes are way cooler than what they get to bring to school.
They do love these Ginny Bakes cookies! 
My 6 year old always says "Mommy if there were only 2 things to eat in the whole wide world...Lunchables or McDonald's what would you choose?" I'd starve!

No...I don't tell her that, but that's what I always think to myself! (But I do give McDonald's some credit for putting healthier options on the menu these days) I guess you can call me a food snob...but not in the "it has to be more expensive to be good way  "..it just has to be clean for my family and Paleo for me.

I first learned about going Paleo from my CrossFit Coaches. I remember they handed out a list of foods you could and could not eat... and I was terrified! This is the girl who used to eat a box of Wheat Thins on the way to work and call it lunch! And we won't even talk about the days of Skittles and Diet Coke for breakfast! No bread...are you kidding me?!

It's so funny...because now it comes so easily. I don't even think twice about it! Originally going Paleo was for shallow, aesthetic reasons. I was training hard and I wanted to lean out...and bam...a couple of weeks in and I started to see results. That was more than 3 years ago and I still eat that way!
This my friends is the "corn bread"...sans corn... I made for my Paleo Stuffing on Easter. It tastes like pound cake! It was  amazing and the stuffing turned out great. The bread is my new go-to side when I make soups.

When I was diagnosed with DM and started to read about how to eat right to stay healthy with an auto immune disease there was so much information about the benefits of a Paleo lifestyle. Lucky for me I already had a huge head start...thank you very much Coach Scott and Coach Dave! Anti-inflammatory foods are the key. I'm not a perfect Paleo-er...but I'm pretty darn good.

Here are some of my favorite Paleo approved ingredients I knew nothing about before:

Almond or Coconut flour.
I use these to cook and bake. For a traditional recipe that calls for breadcrumbs for instance... I'll use  these flours instead. I am a HORRIBLE baker...but when I venture out I will use them too. I just found a new kind of Paleo cookie recently from a Miami based company, Paleo Bakehouse, and they are really good. Mom and kid approved!



Almond Cheese
There are mozzarella and cheddar versions.

And Coconut EVERYTHING! (But especially butter and oil)



Thursday, May 8, 2014

My Medicine

"Here, take this. It's used to treat Malaria and it can make you go blind."

Ok, so maybe that's not how my Doc said it, but that's what I heard. For a year I was put on a medication to help clear up my skin. It is also an anti inflammatory. And it worked. My skin definitely improved (though it was never totally clear) and the pain in my hands did go away.

Even though DM traditionally attacks your muscles too I have been very fortunate that my muscles are in the clear. I have blood drawn every few months and so far my levels are right where they should be. If not there's a chance I'd have to take a steroid. So considering that, my prescription was mild believe it or not.

But still every time I took those pills, twice a day, I cringed. I know my diagnosis. I accept it. But I can't accept putting something that I consider so potent in my body, whether it helps or not. 

I gave it a year. One year. I played by the "rules" and took my medicine. But now I'm done. I took my last dose March 25. It's May now and guess what, my skin still looks pretty good. I still flair from time to time but that's nothing new and I know my triggers and try to stay away from them. 

Now, the pain and numbness in one of my hands is back. At first it scared me. But now I realize that the medicine I was taking was masking my pain, not curing it. And that just makes me angry.

I mentioned my triggers. Besides the sun, I know what they are thanks to an incredible nutritionist and dietician I've been working with since shortly after my DM diagnosis. I'll detail more about what I eat and don't eat in a later blog, but bottom line is eat clean!

I eat well. Sometimes too much :). I exercise all the time. I go to a chiropractor and I recently started acupuncture. 

I just started acupuncture again to help ease the pain and numbness in my hand. Don't mind the old hole in my belly button from an old piercing! If your teenager is considering it show them this to change their mind!

And for now...(and hopefully from here on out)... I'm not on any meds. I want to be clear. I do believe in medicine. And I think there are amazing doctors out there. But I also think our bodies, all on their own, are pretty amazing too!

Friday, May 2, 2014

You Win Some, You Lose Some


What I Miss Most: The Sun!

Rule number 1 with Dermatomyositis or DM (it's waaay too long to type), is to stay out of the sun! Yes my skin can get super red, but as long as I stay out of the sun and stay healthy, it should stay under control.

Here's the problem, I LOVE the sun. Like really LOVE the sun. I am one of those people...pre-children of course...who could lay out all day long. I love how it feels. It gives me a natural high. The hot summers down here don't bother me. I used to run outside in the middle of the day and LOVE every minute of it. The beach, the pool, you name it, any reason to be outside I was all about it. A tan just looks healthy and refreshed. And now... the sun is my biggest enemy, it's just downright dangerous.
My first time at the beach post diagnosis. It was my sister's wedding weekend. I was more self conscious than I had ever been at the beach. I remember feeling like everyone was staring! Then my mom says "You're sexy!" Haha, gotta love mom.


My husband doesn't understand why I miss it so much. He hates the sun. But man, for me this is hard. And I'll even be a little shallow here and admit I miss wearing bikinis! Most women dread them, I never did, and genuinely miss them. Now I wear SPF shirts if I'm outside for long periods of time or in the pool/beach...They're super HOT! (enter my sarcastic tone here, I'm not talking temperature)

I did discover Coolibar. And I honestly love their SPF clothing.


I know in the big scheme of things this probably sounds like something minor, but it's something I LOVE. It's long sleeves and a baseball cap for me by the pool from here on out. If my legs are too exposed I have some sexy SPF pants too! Tents and the shade are my best friends.

Not that I have a choice now, but I guess it will be better for me in the long run... and push back my need for Botox even farther, no more wrinkles, no Botox needed. :)

What I've Gained: My Health!

Sounds crazy right? My body's attacking itself yet I feel like I am healthier now than ever! Before my DM diagnosis we had pretty much gone all organic in our house. But as I quickly learned that's not enough. Each one of us is so different. And our bodies react to foods, even good foods, in different ways. The wrong foods have the power to destroy our bodies, just like the right foods have the power to heal them. Overall I feel healthier now than I ever have. I wake up at 2am, yet feel more energized throughout the day than I did when I worked 9-6. I credit what I eat and the vitamins I take.

DM changed my life, in a lot of really bad ways. Bottom line it sucks. But I also credit this crazy disease with forcing me to learn about the body...my body...what works and what doesn't.

And for that reason... in a really weird and twisted way...I'm thankful it happened.

Monday, April 28, 2014

"What's Wrong With Your Hands?"

My hands started getting red, like really red. I noticed it but thought my skin was dry or irritated. So I started using more lotion. I switched out the latex gloves I wore to wash the dishes. I stopped chalking up my hands during workouts…but nothing  made it go away. Then other people started noticing.

"What's wrong with your hands?"
"Why are your elbows so red?"
"Did you get sun? Your cheeks are so pink!"

Finally I decided to go see a dermatologist…and then 3 more.
Hives, stress, an allergic reaction, you wash your hands too much. I heard it all.
It was an exam, and two biopsies later that revealed the Dermatomyositis by an amazing dermatologist who I’m so grateful I finally found.

There are a lot of doctors out there, but there are so few good ones. He is one of the best. And I consider myself very lucky to have found him. (Even though we look at medicine differently at times, more on that later)



Pic about 6 months after I started treatment. You can see how red my hands still are.
And that is significantly better than they had been.
Truth Time: I went to his office that day to get a prescribed ointment to make my redness go away and to ask about Botox! I know I'm in my early 30's...but after living in South Florida my whole life and worshipping the sun...it's done a number on me. And let's not forget about those damn HD cameras! But anyways, let's just say the subject of Botox never got brought up...there was way too much other stuff going on.

I have never been looked at by a doctor the way that I was that first day. I have always been healthy, fit (at least that's what I thought at the time). But when my hands were examined, and then my elbows, my chest , the tops of my thighs and my face...I knew something was wrong.
And then the question..."Do you have any pain in your joints?"
I thought about lying! For about a year I hadn't been able to open a jar of tomato sauce. And I had been waking up in the middle of the night with a throbbing numbness down my arm. My fingers stayed numb all day. (Sometimes they still do.) I attributed all of those symptoms to my intense workouts. Almost like battle scars. I was proud of what my body was capable of physically while training. Who cared if my hands hurt...all the time?

At that moment I knew I was in trouble.

Friday, April 25, 2014

Unlucky 2013

 
 
“We think you have Dermatomyositis.”
 
“Um…I’m sorry dermato-myo-what?”
 
Yep, that was my reaction to a diagnosis that would change everything!
Before I got that crazy, scary, long “D” word thrown my way I was told I could had hives, Lupus, Sjogrens…all sorts of fun stuff.
But Dermatomyositis was the final diagnosis.
In laymen’s terms, because I’m no Doctor, I’m a TV Anchor for crying out loud, exactly one year ago I was told I have an autoimmune disease that attacks my skin and my muscles.

Morning Anchor at WPLG Miami
My skin…I’m on TV. Not good.
My muscles…much of my life at that time revolved around Cross Fit and training hard, really hard.
That day in February 2103 my world was rocked.
 
One of the first things I was told was not to go home and google Dermatomyositis (I just recently started pronouncing it correctly), but of course that’s exactly what I did.
Go ahead, you do it. It will scare the crap out of you.
It did me. It was horrible. I cry now just thinking about those first few days. The thought that I was going to die early, earlier than I should, never left my mind.
I couldn’t look at my girls without being reminded what was happening inside me. It was my husband who got me through it. He did the research, he talked to our family and ALL of the doctors. At the risk of sounding sappy, he is the main reason I didn’t lose it, because God knows I was on the verge.

At a wedding, with a stitch in my hand, while waiting for biopsy results. None of our friends there knew what was going on.

It's been a wild journey, one that a year later I'm finally ready to talk about. From the first symptoms, to how I'm treating and healing myself now. I'm not cured, not even in remission.  I see my health and my body as a constant work in progress. And it does take work a lot of it. And discipline. But I'm ok with that.