Thursday, June 30, 2011

They'll be begging for more (aka: Tomato Bruschetta)

Happy Thursday!

It's summertime and that means - tomatoes are a'plenty!  Tomatoes contain Vitamin C and Lycopene (a potential agent for lowering the risk of both macular degeneration and several types of cancer), making it one of our power foods.

There are so many ways to eat tomatoes.  Never mind the boring sliced tomato in your sandwich or even the little guys in your salad, this recipe will rekindle your love for ole red.

Need something to take to a potluck?  4th of July Bar-B-Que?  Want to impress your significant other?  Tomato Bruschetta is a hands down winner. Seriously, you can't go wrong.  You can find this Whole Foods Market recipe here.

I pretty much follow the recipe except I don't use a whole red onion (too much for me) and I use way more basil and Italian parsley than it calls for.  You MUST use fresh herbs.  I made this recipe once using bottled herbs and it makes a huge difference.  Plus, there's nothing like fresh basil.  Mmmm...

In the event you have some leftovers (it keeps really well for a couple days) it's delicious in a salad.  Just cut up your favorite greens, add some nuts, avocado and top with bruschetta.  It's a winner!!


I think we need to talk...

Apparently my last post made a lot of people sad (and worried about me).  Let me assure you that I'm okay.  Really.  I am.  Some days are harder than others, and I often question whether I should share those days or not. I choose to share.

Years ago, I visited a friend when her baby was just a couple months old.  She said she purposely didn't clean her house because she wanted me to see what life with a newborn was really like. It's hard.  I mean come on, you're lucky if you get to sleep 3 hours in a row, who has time (or energy) to clean the house. I appreciate that kind of honesty and I remembered it when I had my first baby and the dishes and laundry piled up.  I wish someone told me how hard breastfeeding could be before I had my first daughter. I stayed up too many nights searching for "friends" on the internet that were having the same problems:  baby not latching, repeated bouts of mastitis, chronic clogged milk ducts, and dare I say it... maybe even a little depression.  Yup, breastfeeding was supposed to be this perfectly natural and beautiful thing, but for three months, it just plain sucked.  I felt guilty for even thinking it.  What made it worse was I felt like I was the only one struggling with it.  Months later, I found out that many of my friends had similar experiences.  For whatever reason, we just don't talk about it.  Since then I realized that it doesn't do anyone any justice to only expose the good.

So yes, I choose to share it all:  the great, the good and the down right ugly.  I don't want special attention or sympathy.  I just want to be honest.  I think truth is inspiring. Whether it makes you laugh, cry or re-evaluate your life, truth really does set us free - if we let it.

Thank you again for reading and being part of this crazy, but beautiful, life of mine. Thank you for your comments and emails.  They make me smile.  And for those who read "in secret" - thank you for being here.

Hope you're having a great day,

Sunday, June 26, 2011

Loaded Questions (and the meltdowns that follow)

Yesterday I went to Safeway (the same Safeway I always go to) and went to checkout (with the same cashier I always go to).  She's sweet to my kids and always very interested in what we're up to.  After all, she saw me shopping when I was pregnant and craving noodles, lemonade and oatmeal chocolate chip cookies.  She saw me with a newborn buying diapers, cabbage (ladies, you know what I'm talking about) and ready made spaghetti sauce.  For months, she watched me hobble around and struggle to lift a gallon of milk out of my cart.  She saw my shopping list go from chicken, meat and veggies to tofu, veggies and well, more veggies. She sees me with my bag of meds from the pharmacy.  She watches my daughters grow and take up more space in my shopping cart.  Really, she sees my face more than most of my friends or family.   So yesterday, she may (or may not) have been surprised when she cheerfully asked "How are you?" and instead of the automatic "Great! How are you?" I stared blankly, as though I didn't know how to answer.  And then.  Then I laughed.  It wasn't one of those ha, ha, ha something is funny kind of laughs.  It was more of an ironic, oh my gosh, what the heck is going on, excuse me while I lose it, kind of laugh.  I could tell she didn't know what to say but she nodded her head like she knew what I meant (after all, she has watched my life evolve over the last year).  I could feel my face get hot, my throat grow a lump and the tears start to form, but I was definitely not about to lose it - in Safeway - again.  So I sucked it all up, cleared my throat, smiled and said, "I'm great.  How are you?"  We talked about how beautiful the blueberries were and how happy we were that the sun was finally out.  When I paid the bill and my cart was loaded she gave me one last look, as though to say, "It's okay, you can lose it in my line anytime" and I was off.

As you can imagine, I was a little embarrassed as I drove home and thought about what just happened.  Why then?  Why there?  Why in front of her?  Why?  

And then the floodgates flew open.

And I asked the question I never once asked for the last 9 months, "WHY IS THIS HAPPENING TO ME?"

I know it's a stupid question to ask.  I mean, it's a loaded question, really.   But I needed to ask, even if there's no answer, because this whole thing just doesn't make sense.

My quasi-meltdown didn't completely come out of the blue.  For the last week I've had pain in my left hand.  It sort of feels like carpal tunnel on steroids (which makes sense since I'm on steroids).  I didn't think much of it at first but after about the fifth day it was getting hard to grip things and the pain was waking me up at night.
I consulted Dr. Google and apparently it is (or can be) related to AS.  Come on AS, you're supposed to only affect my spine and the joints and ligaments that attach to it, leave my hands alone.  Nope, lots of AS patients suffer pain and ultimately bone fusion in their hands and feet.  Seriously, cut a girl a break.  If my hand fuses together I'm going to be pissed.  Well, I see my real doctor next week so I'll talk to him more about it, but it was just another reminder that I'm dealing with an actual disease.

Anyway, I guess that's why my Safeway friend's innocent "How are you?" sort of put me over the edge.  I'm not great.  And I don't know what to say other than 2 years ago I was able to strike a pretty impressive yoga pose and now, well, now I get a gold star at the doctor's office if I can bend over and touch my toes!  That's just ridiculous.  I used to surf, run, hike - I even played football.  I was the fricken quarterback for goodness sake.  It just doesn't make sense.

But really, it never makes sense when someone gets sick.  There are some questions that are worth asking because the answers just might save your life.  And then there are other questions that just drive you into a dead-end where there's nothing but a pity party going on.  I think it's okay to go there sometimes, I just can't stay there.  For now, I'm trying to figure out the right questions to ask, the right roads to explore, the right prayers to pray.  But I'm still thankful, so very thankful, because at the end of the day, I'm here - with my incredible family, with a hopeful future and with people that let me laugh, cry and lose it, but still love me anyway.

How are you?

Thursday, June 23, 2011

Swiss Chard, Mushroom and Quinoa Salad

Welcome to our first ever Try This! Thursday (just made that up).  This morning (while my baby took a nap and my 3 year old colored and played with My Little Ponies) I made a Swiss Chard, Mushroom and Quinoa salad.  

While I was cooking, I started thinking - in an effort to get the most people involved and cooking, starting next week I'm going to choose recipes from the Whole Living (and other) websites so that you can easily access the recipes as well.  I don't want anyone to feel left out if they don't have a particular book and I also don't want to run into any copyright issues by posting material on the blog. Fortunately, I found quite a few recipes from the Power Foods book on the Whole Living website so that's great.  

As for today's dish, I chose it because I already had all the ingredients and I've been in a mushroom kind of mood recently.  You can find the full recipe on page 256 in Power Foods.

I started off with the last of our rainbow chard from the garden. Oh, I'll miss you.

Chopped it up and cooked in some olive oil for about 5 minutes.  Add salt and pepper to taste.   Put aside.  

Cremini mushrooms sauteed in olive oil and garlic. (Cremini mushrooms are more mature than the regular white button mushrooms so they are a bit more flavorful.  They're "younger" than portobello mushrooms, and are often called "baby bellas")  Cook for about 5 minutes on medium, until the juices start flowing.

Quinoa.  If you haven't tried quinoa yet, you MUST!  It is considered a complete protein, as it contains all 9 essential amino acids.  It is loaded with vitamins and minerals and is gluten-free.  I use it in soups, salads, in place of rice, you name it.  I do 1 cup quinoa to 1.5 cups liquid.  I say liquid because I usually use vegetable broth for part of the liquid (ex:  2 cups quinoa, 2 cups water, 1 cup vegetable broth). It cooks super fast too (like 15-20 minutes).  Try it and tell me what you think.

I added 1 cup of cooked quinoa to the mushrooms then tossed with fresh thyme from our herb garden.  Heat through.

And there you have it.  Swiss Chard, Mushroom and Quinoa Salad.

Yum!  It was delicious.  Personally, this would be a complete meal for me, but I'll probably add some fish for my husband.  

Okay, now I'm off to take my shot (with a little less dread this time). 

Have a great day, 

Tuesday, June 21, 2011

My New Favorite

I love cookbooks.  I have lots of them, but I think I may have just bought my favorite one.  It's the new Power Foods cookbook from the editors of Whole Living Magazine.  It's a must have for every kitchen.

Here's why I love it:

- The first 50 pages describe the 38 power foods - health benefits, how to buy, how to store, preparation tips and other tidbits.

- Every recipe includes a beautiful picture.  I don't know about you but pictures are a must for me.  Trust me, you will want to cook everything you see.

- The recipes are easy and don't include 15 + ingredients.  They are recipes you would actually want to cook... and eat.

- There's something for everyone.  From miso salmon with cilantro sauce and hearty spinach and chickpea soup to cherry-berry tea smoothies and vanilla-bean baked apples, the selections are to die live for.

I think eating well should taste fantastic and make you feel fabulous.  Whether you're trying to incorporate more whole foods into your diet or just need some new inspiration, this book is sure to deliver (By the way, I'm not being paid for this glorious plug, I just love sharing good stuff).

So... I was thinking, since I'm going to be cooking up some of this goodness anyway, why not share it with you all.  In an effort to keep me on track let's pick a day of the week to do our little Power Food recipe of the week.  Perfect!  I pick Thursday.  I've come to dread Thursdays because that's the day I have to give myself an Enbrel shot.  I need something happy to counter my dread.  Yes, a yummy new recipe/blog post is just the ticket.  Fun!

Happy Power Cooking!

Sunday, June 19, 2011

A Father's Love

When I was five months pregnant with my oldest daughter I went to Seattle for a work training.  While I was there I got a call from my doctor's office back home saying that the results of my quad screen came back showing my baby had a "high likelihood for down's syndrome".  I would have to see a genetic counselor and have more tests done as soon as I got back home.  I hung up the phone and cried the most painful cry. I was devastated. Amazingly enough, my husband had flown in that day to visit me before heading off to a conference on the east coast.  He was with some friends when I got the call so when I told him he needed to get back to the hotel right away he knew something was wrong.

I sat on my hotel bed, waiting for my husband, holding my belly. I thought about all the what ifs.  My heart raced but I felt weak.  When he finally arrived I was out of tears and completely drained.  I didn't know what he was going to say or what I needed to hear. I did most of the talking.  I explained what the doctor said and what steps we needed to take from there. He was quiet. I shared my what ifs and my fears. He listened. When I finally asked him what he was thinking he responded:  We have enough love for this.

I was speechless.  He couldn't have said more beautiful words.  My heart stopped racing, my mind stopped spinning.  No matter what was about to happen, we would have enough love for it.  Four months later I gave birth to a healthy baby girl.

Here we are, almost four years later, with two beautiful, healthy daughters. We don't take a moment of them for granted.  They are my most precious gifts and I am so thankful they have a father that loves and adores them.

This year our family has experienced indescribable joy as well as incredible pain. Through it all, there is one thing that still rings true:  We have enough love for this too.

Happy Father's Day to the man who has held my hand through it all.


Friday, June 17, 2011

A New Fire

The tears have dried up, my mind is clear and there's a new fire in my belly.

Yesterday I gave myself my Enbrel shot for the first time.  I was so nervous. Physically, it didn't hurt as much as I thought it would. Mentally, it was just what I expected.   I've had a real unsettled feeling the last 2 weeks.  I mean you're told you have a chronic disease with no cure and the long term treatment has pretty scary side effects - you're given a 5 page brochure and sent along your way.  Don't get me wrong, my doctor has been wonderful.  I just have so many questions.  I feel like there should be some kind of class that teaches you the ins and outs of the disease, a place where you can ask your millions of questions and actually get  some concrete answers. 

Here's where I stand.  I have a medical diagnosis:  a chronic autoimmune disease.  Treatment entails, among other things, shooting myself with a powerful immune suppressing TNF-alpha blocker every week.  While the medicine has definitely improved my pain and overall ability to move and function, it can lead to intestinal bleeding, kidney failure, depression, osteoporosis and cancer, to name just a few.  Oh, and it gives me a splitting headache for 3 days after each shot.  This just cannot be the end of the story.  

Maybe I'm the overzealous, idealistic, newly diagnosed, freshman of the class.  Maybe.  And that's okay (it wouldn't be the first).  I have incredible respect for the medical community and doctors (most of them).  I have been fortunate to have had wonderful, caring and smart doctors (with a few exceptions) throughout this whole process.  At the end of the day, I know I'm just a patient - with a chart (a really, really fat chart).  Now that there's a diagnosis their job is to prescribe the most effective treatment to help me live the most "normal" life.  And I guess my job is to follow along because they are the doctors and they know best.  I have no doubt that they are looking out for my best interest and that they truly want me to have the best quality of life possible.  That being said, we just might differ on our definitions of "my best interest" and "quality of life".  Ultimately, the pain is mine, the risks are mine and the serious, sometimes fatal, effects are mine and mine alone.  So where does that leave me?  The answer is crystal clear.  I need to seek out alternatives.  I need to look deeper, at what the cause of all of this might be.  I need to turn over every stone, consider all the possibilities, and change whatever I need to change to allow my body to heal. No, I'm not going to do an Eat, Pray, Love journey around the world to find the cure for AS (well, at least not yet).  But I am going to look for some doctors that are interested in the why.  Why the inflammation?  Why the pain?  Why now?  These answers are important to me and important for healing.

The day after I was discharged from the hospital to wait for my biopsy results I went to church.  I was hoping the message was going to be entitled "God Heals. All the time. Everything is going to be okay."  It wasn't.  In fact, I can't say I remember a single word of the pastor's message that morning, except for a story that spoke to me then and still speaks to me today.  He talked about the way we often pray for "traveling mercies".  He said that instead of praying "Oh Lord, please protect us as we travel and bring us safely to our destination blah, blah, blah" we should be praying "Lord, please take us on an incredible adventure.  I pray we meet new people, see amazing things and experience the world and each other in awesome new ways.  And Lord, we know you are our protector and that you are always with us."   I love it.  I don't want to miss out on anything God has for me during this season.  I don't want to just safely arrive at my destination for arrival's sake.  I want to see with new vision, feel with deeper compassion, love extravagantly, live intentionally.   And there, somewhere along the way, there will be healing.  I just know it.

Sunday, June 12, 2011

Thank You

I just want to take a minute to say thank you to everyone for the incredible love, support, and encouraging words you have given me. If you are reading this right now, then I'm talking to YOU.  Thank you.  This blog is quickly evolving into something beyond what I could have imagined.  It has been a healing outlet in a very difficult time, but it has also reconnected me to so many of you.  Back in February when I was in the hospital, I told my husband that I didn't want a single tear to be wasted, not a single one to be in vain.  The comments, emails, and messages that I receive from all of you make me realize that there is purpose - even in sickness - and that gives me strength.

So Very Thankful,

Friday, June 10, 2011

So...Now What?

I have tried to write this post several times this week. All I could do was stare at the title and wonder. In fact, the question alone is a bit daunting. It has been a week since my diagnosis and the whole wrapping my head around it thing hasn't been the easiest.

I don't think that ignorance is bliss. In fact, I think that knowledge is power. It drives out fear, gives us choices and helps us move forward. That being said, I'm learning to filter what I put in my head. I don't need to know everything there is to know about AS - at least not right now. I went on a few online AS support groups. A few days (and a couple meltdowns) later, I realized that it's just too much too soon. The disease can be horrific. Reading about people's pain, deformities, side effects from medication, and overall suffering sent me into a cloud of hopelessness and fear. I broke down in tears doing laundry, in the produce section of Safeway, taking a shower, checking the mail. It wasn't pretty. I had terrifying visions of my future. I may as well just shut down the blog, curl up into a ball and just quit. Okay, well, that's not really an option but the thought crossed my mind. That's what happens when you're paralyzed by fear - nothing good can come from it. So, I decided: NO MORE GOOGLING. Not now anyway. The only information I need is that which will make me stronger and give me hope. The "what ifs" are endless. Endless and useless. I can't think that way.

So now what? Well, a 5-step plan is long overdue so here goes:

1. Exercise. Exercise. Exercise: Okay, so this won't look quite like it would have looked a year or two ago but then again, nothing does. Exercise is key in treating AS. It helps maintain posture, flexibility, and lessens pain. I'll be swimming, walking and stretching my little heart out.

2. Medication: Let's not talk about the risks and possible side effects right now. Thinking about it makes me want to vomit. Today I told my doctor that the whole thing freaks me out and he nodded his head (to validate my feelings) then told me it's "safer than it sounds" and a lot better than what I've been on the last 3 months. Somehow, safer than "THIS MEDICINE MAY INCREASE THE RISK OF DEVELOPING BLOOD CANCER" doesn't make me feel much better, especially as I'm injecting it into my thigh. Well, it's either a risk or letting my spine fuse together. Ugh. Oh wait, we're not supposed to be talking about this right now. Okay, anyway, the crazier part is that this medicine costs $600 a SHOT!!! That's $2400 a MONTH!!! What the heck??? Fortunately I have good insurance so I only pay $10/shot out of pocket. The whole thing is absurd. I mean, obviously if I didn't have insurance I just wouldn't take the medicine. Oh boy, this could move into a very political discussion. Let's move on...

3. Eating Clean and Green: I love what I feed my body. I love shooting down some green juice and knowing that my cells are having a little party. I love that I'm helping my poor little immune system that has been taking a beating. There's a hot debate on whether diet affects symptoms of AS and other chronic disease. I don't care what the debate is. The bottom line is that we either nourish or tax our bodies with the food we eat. I choose to nourish and this blog will be exploding with yummy recipes for all. I know, I know, you can't wait. Oh, but I have a confesssion. I'm no food saint. I ate an entire carton of mint chocolate chip ice cream this week (yup, the whole thing all by myself). It was delicious and I enjoyed every bite of it.

4. Hope: "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11. I've read this verse a thousand times, but it has never meant more to me than it does right now. Hope is a powerful thing. I believe in God's promises and I am writing this one on my heart.

5. Live: That's right, you heard me. Step 5 is to L. I. V. E. Live. I am going to dance (as soon as my body lets me), sing (at the top of my lungs), love (because why else are we here?), and shake things up a little. Yup, all those cliches sound cheesy until you're living it. You know the ones: "They call today the present because it really is a gift." Hallmark knows what's going on. I am thankful to be here and until there's a cure or a miracle I'm going make this thing work for me (and hopefully for you). Call me crazy but I believe something fantastic is on the horizon.

This post wasn't so hard afterall. In fact, I feel better already. Thank you. I guess I needed my week of roller coaster emotions to be here right now. What you see is what you get. The pain is real. The fear is real. But so is the joy, the hope and the love.

Be blessed,

Friday, June 3, 2011

Accepting the Answers

I've been avoiding this post. There are a million things rushing through my head but not a single word I want to say. When I started this blog, I couldn't wait for the day I would finally receive my diagnosis. I thought it would be so exciting. I would breathe a sigh of relief and share with you the problem, the solution and the 10-step plan to be good as new. We would all sort of celebrate and reflect on how crazy this year has been. I wasn't ready to talk about a chronic disease. I wasn't ready to say there is no cure. I can't accept that "treatment" only helps to slow the disease down.

There's a lot to wrap my head around. I'm still trying to process all of this and I know I'll be tossed between tears, anger, strength and hope in the days and weeks to come. For now, I'll share my heart and try to put this new reality into words.

I have ankylosing spondylitis. It is a chronic inflammatory disease that affects the spine and sacroiliac joints. Basically the joints and ligaments along the spine become inflamed, creating pain and stiffness. Eventually, the joints and bones fuse together. AS is a systemic disease that can also affect the eyes, heart and lungs. Nobody knows what causes AS and there is currently no cure. Treatment focuses on reducing pain, preventing deformities and slowing down the progression of the disesase.

Unfortunately, my xrays and MRIs show that I already have significant damage to my hips, pelvis and spine. I don't know exactly what that means yet except that it explains months of suffering. There will be more tests and discussions in the days to come. In the meantime, my treatment entails giving myself a shot once a week for the rest of my life, or until God or science comes up with something better. I made the mistake of googling the medication I'll be on. Main risk: cancer. Right now I don't exactly have a choice because we need to control the disease from moving so quickly. It's ironic how you have to chose between slowing one disease down and possibly injecting yourself with another.

So here I am - thinking about the present, wondering about the future and trying to settle into a new normal. I won't take this sitting down (or hunched over). I will tear this thing apart and learn everything there is to know about this disease. I'll fight for each and every day because the alternative is just unacceptable. There's a long road ahead. I have no illusions that it will be easy. All I know is that I am strong, God is still good, and this story has just begun.

Thank you to those who have walked beside me from the beginning and to those who have just joined along the way. We all have our own roads to journey, our own challenges and triumphs. I am thankful and humbled to walk with you.

With Much Love,