I is for Invisible Illness

II first became invisible when I was 12 years old.

My sixth grade class was reading The Invisible Man, and our teacher had a brilliant idea to turn the tale into a feature film–sort of. She borrowed a video camera from the AV department for the project, and then explained to us how she would film us as we read the different roles.

It was a low-budget production. We didn’t have costumes or an elaborate set. We didn’t even have to memorize our lines. We just had to hold the book in front of our faces and read.

Since acting skill was not a requirement to get an actual speaking part, my teacher decided the best way to assign “actors” to roles was to pull names from a hat. Everyone waited breathless to hear whose name would be pulled for the lead role.

When my name was read, I listened to the disappointed groans echoing through the classroom.  Everyone wanted the part, and no one was thrilled that I had gotten it, except for me.  A few people tried to barter with me and offered to trade their lesser parts for my starring role.

I promptly turned them all down. I knew what I had, and I wasn’t about to trade it for a “co-star” label. I was going to be invisible! How cool was that!

On the day of the filming, I stood behind the camera and read my lines. Invisibility, apparently, is very simple to achieve.

 

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Photo Source: Wyatt Wellman (CC by 2.0)

A decade later, I learned invisibility is neither cool nor simple. It’s lonely, confusing and frightening.

When I was 20, I was diagnosed with Crohn’s Disease, one of a set of conditions known as Inflammatory Bowel Disease, which is characterized by chronic inflammation of all or part of the digestive tract. This inflammation results in severe diarrhea, pain, fatigue and weight loss. IBD can be debilitating and sometimes lead to life-threatening complications.

It is also often invisible. People suffering from invisible illnesses like IBD, fibromyalgia, chronic fatigue and arthritis look fine on the outside, but they live with chronic pain and fatigue. Some days I wish I looked as bad as I felt just so a decline of an invitation to happy hour wouldn’t be perceived as disinterest. If I looked sick maybe I wouldn’t feel guilty taking up a seat in the doctor’s office.

At my sickest, people often complimented me on my thin physique. “You’re so skinny,” they would say, or “You look great! What are you doing to lose weight?” I didn’t think telling them, “Eating makes me feel like I’m digesting glass,” was appropriate, so I just smiled politely and kept the secret to myself.

I once had a manager who was skeptical I had a disease at all. I felt like I was begging when I asked if I could call into a meeting because I was too exhausted to drive five hours to be there in person. He grudgingly agreed and then cut me from the agenda all together and took credit for my work. Another time, after emailing to say I would be working from home because I had to take a narcotic pain killer just to get out of bed, he called me and kept me on the phone for hours grilling me on the work he didn’t think I was doing. I actually felt vindicated the day I told him my doctor was recommending major abdominal surgery.

Invisibility is definitely not the glamorous life it was back in the sixth grade. I wonder if I could get any of my classmates to trade with me now?

 

The Re-Resolution of Stiletto Momma

2014…Day Two. The Christmas decorations are wrapped and boxed again. The bushes lining the house are dark as their formerly twinkly lights are extinguished for another season.

People are returning to their pre-Christmas carol, pre-gift giving lives of work, school and business as usual. “Merry Christmas!” has been replaced with “Happy New Year!” followed shortly thereafter with, “What’s your New Year’s resolution?”

Resolution? Hmmmm…

I am rarely able to come up with a resolution much sooner than 11:59 p.m. on December 31st. I’m too exhausted from all the party planning, menu making and present wrapping to think beyond the current holiday much less think about how I want to change my life starting at the stroke of midnight.

Then I’m faced with the inevitable failure of actually keeping the resolution. The minute I resolve to get back in the gym, I want a nap. If I resolve to eat a healthy diet, I will immediately start craving Reese cups.

I have never experienced the thrill of successfully achieving a resolution…until January 1, 2012 when I wrote and published the inaugural post of a little blog named after my alter ego, Stiletto Momma. In that post I resolved to simply “Do Something New.”

Yes, it is very open ended and non-commital, but at the time I also threw out a few possibilities like learning photography and Photoshop. I did buy a good camera that year…in September. I haven’t learned to use it beyond what I read in the first half of the instruction manual, and about the only thing I can do in Photoshop is look at my pictures. I suppose that counts, but just barely.

I mentioned one other possibility in that New Year’s post two years ago.  “I’ll start a blog,” I wrote, and because I typed those words and clicked the “Publish” button, I was a successful resolutioner in the very first hours of the new year! Counting this post, I have gone on to write and publish 64 posts as Stiletto Momma–warrior of all things maternal, corporate and pointy-toed!

When 2013 rolled around, I knew exactly what my resolution would be.

Do Something New!

However, as I mentioned in yesterday’s post, 2013 was a witch of a year and a wicked one at that.  I couldn’t get around to deciding what “new” was going to be, so I stayed with what was working, and I blogged some more. Pretty soon I was blogging about what was really on my mind–my ongoing battle against Crohn’s Disease.

thegreatbowelmovement.org

My prize pack from TheGreatBowelMovement.org gave me everything I needed to raise IBD awareness in 2013.

In my quest for answers and information, I ran across what has turned into one of my favorite websites, www.thegreatbowelmovement.org, which has been making Crohn’s and Colits (the two forms of Inflammatory Bowel Disease) cool since 2010. The founders of this non-profit encourage patients and caregivers to talk about their diseases in an effort to raise awareness. They even sent me a cool prize pack complete with intestine socks and an “Ask Me About My Crohn’s Disease” hoodie.

My 2013 “new” turned out to be writing about something that has been a part of me for almost 25 years. I may have lost some readers who weren’t interested in learning about the woes of a sick person, but embracing a new mission of raising awareness for something I know quite a lot about encouraged and empowered me in a time when I needed to feel strong.

With two successful resolutions under my belt, I’m ready to declare the 2014 version. Any guesses on what it might be?

DO SOMETHING NEW!

That’s right. I’ve decided on a new “new”, and if you’ve been following along for the past few months you could very well have an idea of what it might be.

I am a writer. There, I said it. I am a writer and this year, I intend to write with more dedication and purpose than I have in a long time.

I have a master’s degree in journalism, but outside of internships during college, I have never worked in the field. Maybe I was just waiting around for the blogosphere and digital publishing to be born. Whatever the reason, I graduated from Penn State with a journalism degree and immediately took a job in marketing.

The next one was in fundraising (another form of marketing). When I tried technical writing next, I found my skills were wasted writing about boring things like databases, and moved back to marketing. I had found myself a niche, and that’s where I’ve stayed for over 20 years. I was a marketer with writing skills.

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The Hubs gave me this cute little keyboard for my iPad–perfect for a blogging resolution.

Now, I want to be a writer who knows how to market herself. You can expect to see more of Stiletto Momma in 2014. I will soon be launching a Facebook page, and I might even start Tweeting. If you’re lucky, you could get a glimpse into this impressive shoe collection I’ve been hinting at. We could even do a contest or two!

I’m starting this blog re-energizing effort with the WordPress Zero to Hero program where my favorite blogging platform will give me a daily task for blog improvement during the month of January. Today’s task is to introduce myself to my readers. If I’ve done my job, you should have been able to pick up a few nuggets of me from the above ramblings, but in addition to being a chronically ill writer who markets (or a marketer who writes) and makes unoriginal New Year’s resolutions, I am:

  • a momma to two amazing children–a six-year-old tomboy and a 20-year-old all-American boy.
  • an adoptive momma to that six-year-old who was born in Russia and became a US citizen five years ago.
  • an Army momma since the 20-year-old is a cadet at the US Military Academy at West Point. (Go Army!)
  • a football momma because that cadet also plays on the offensive line for the Army Black Knights and has been working toward that goal since he was five years old. (GoArmy!)
  • a football wife because the Hubs played football at Penn State once upon a time, coached our son for most of his football career and will accomplish seemingly impossible tasks to avoid ever missing a Penn State Nittany Lion game or a Pittsburgh Steeler game.
  • a doggy momma to the Furry One and the Fluffy One who, like the rest of the family, have clever pseudonyms in this blog because it is my choice to blog about them, not theirs, and they deserve a little bit of anonymity.
  • a fairly decent home cook whose specialty is anything her son requests and anything her picky daughter will eat.
  • a lover of shoes and all things fashion.

I am Stiletto Momma, and I resolve to make 2014 blogtastic for everyone!

What’s your resolution…or un-resolution…or re-resolution?

The Wicked Year Is Dead

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My Toto (aka the Fluffy One).

I woke up this morning feeling like Dorothy fresh from her victory over the Wicked Witch. I wasn’t holding an empty water bucket, but there was a small fluffy dog at my feet, and I could practically hear a chorus of Munchkins singing:

“Ding dong the witch is dead! Which old witch? The Wicked Witch! Ding dong the Wicked Witch is dead!”

While Dorothy’s witch was known for her high-pitched cackle and green complexion, mine was branded with only numbers: 2…0…1…3.

I knew I was in for a rough patch as soon as I flipped the calendar last January. That ominous number 13 seemed to stare back at me in defiance. I have never been particularly superstitious in regard to the number 13, but after enduring the last 12 months, I’m glad I’ll never live through another year ending in those two digits.

Not long after the New Year, I learned my boss had been fired, and I was reorganized into a new department led by someone whose management style leaves much to be desired. That poorly managed reorganization left me with sleepless nights and stressful days. When I finally came to the realization that I had just taken three steps back in my career, I was rewarded with a Crohn’s flare.

I spent most of 2013 in doctor’s offices and hospitals trying to pinpoint the source of my newest pains. I was in good company though. 2013 also forced my brother into an intensive care unit for a drawn-out battle with pneumonia. My MIL had surgery for a cyst in her neck and then we all got to watch her suffer through a TIA. My mom had to dust off her walking cane because her 2011 knee replacement surgery didn’t quite work, and my dad found out through a routine stress test that he had had a heart attack sometime in the not-too-distant past.

2013 was apparently in an alliance with healthcare companies across the country.

Back on the job front…I returned to work in October after seven weeks of medical leave for major abdominal surgery only to be told my job was moving south and somebody else would be doing it. My official layoff date was also my birthday, which turned out to be the same day I found out I would have to undergo a second surgery because one is apparently just not enough for 2013.

There were, however, some bright technicolor spots among all the wreckage of 2013.

Even though I and many of my family members suffered through serious illnesses and health problems, we’re all still breathing and on the mend, and that was the biggest victory in this war of a year.

Take THAT 2013!

SuperGirl

Super Girl to the rescue!

The Young One started Kindergarten, and to my great relief, she is enjoying and excelling at it. She has made friends and discovered the joys of chapter books. (Thank you Magic Tree House.) I have watched her personality take hold this past year as she declared war on not only skirts and dresses, but hoodies and sweaters as well. Her independence is blossoming with unsupervised bath time, and her chore list is growing as trash detail has officially been passed from the Older One to the Young One.

A word to the wise, 2013,  my daughter wears a cape, calls herself Super Girl and travels with me down our little piece of the Yellow Brick Road. You don’t stand a chance against that!

The one making the Navy Midshipman take flight is my oldest child. Go Army!

The one making the Navy Midshipman take flight is my oldest child. Go Army!

I also had the joy of watching the Older One fight battles on the gridiron, including the bucket list-worthy behemoth of all football rivalries, America’s Game…the 114th Army Navy game. Yes, I sat through snow, sleet and freezing rain to watch Army fall to Navy for the 12th straight year (I’m sure 2013 had a hand in that too.), but I have a hard time finding anything else that induces as much joy as sharing a hot meal with my son after witnessing him pore all his heart into a sport he loves so well.

Here’s another note for you, 2013. You may have tried to keep me down with two surgeries this year, but you failed to realize I manage my own calendar.  I scheduled both surgeries just days after seeing my oldest child on football Saturdays. Those were visits with my wizard, and they gave me all the strength I needed to overcome you.

As far as being newly unemployed…I have to admit there are worse things than having entire days with nothing on the to-do list but Christmas shopping, decorating and baking. I also now have the privilege of being a stay-at-home mom for a while, complete with daytime book reading in the car pool line and week-day, mid-morning grocery shopping adventures–things about which a working mom can only fantasize.

I truly believe everything happens for a reason and that no matter where you are, you are right where you are supposed to be. I’m finally starting to feel better…just in time to devote myself to finding out exactly what I want to do next.

Last year did it’s best to steal all the ruby slippers from my walk-in closet. But guess what, 2013… I’m still here, and you’re not.

The Wicked Witch is dead!

Long live 2014!

Happy New Year!

Making My Exit

I have done some difficult things over the years.

I gave birth to a child…without the comfort of an epidural.  Then, as now, when the Older One made up his mind to do something, he did it full-force–no letting anyone stop him, no taking the easy way. By the time, I was far enough into labor to get the blessed relief of modern medicine, my son was moving too fast for the drugs to be safely administered. Fortunately for both of us, time and unconditional love heals all wounds, making the memory of seeing my beautiful baby for the first time far more prominent than that of the excruciating pain preceding his arrival.

Fourteen years later, I traveled to the other side of the globe to meet my daughter.  I fell in love with her at first sight…then left her in the care of strangers for five months while a Russian court pondered my fitness to be her momma. Last night, she told me she was glad she was a part of my family. I squeezed her tight and thanked her for waiting for me.

I have lived more than half my life with Crohn’s Disease, an autoimmune disease that causes extremely painful inflammation of the digestive system, chronic nausea and uncontrollable diarrhea. As treatment for the disease, I have undergone seven surgeries.

Yes, I have done some difficult things. Today, however, I may have done one of the hardest. When the alarm went off this morning, I knew I was destined for a challenging day. It was, after all, the dawn of a new year–my birthday, and a milestone one at that.

I sighed as I threw off the blankets, squared my shoulders and went about the morning routine–shower, coffee, and argue with the increasingly obstinate Young One about whether the sparkles on her t-shirt are cool or embarrassing. (I happen to love the sparkle, but I’m afraid she is leaning toward a more tough-girl chic that abhors the bling I find so endearing.)

I drove to work with Katy Perry blaring through my speakers telling me to roar… Roar…ROAR and that I have the eye of the tiger…the fire, dancing through the fire, ’cause I am a champion and you’re gonna hear me roar louder, louder than a lion!

Yes, my girl Katy inspired me this morning, and as I walked through the parking lot, my stride was strong, and I knew I had a purpose.

muffins

An overwhelmingly sweet batch of muffins from a great group of people who made a hard day better.

I walked through the door of my office suite, beamed a cheery “hello” to the accounts payable manager who held the door open and wished me a happy b-day, and I strode with a swagger through the door of my office. Waiting for me on my desk was a giant tin of mini-muffins tied with green and gold ribbons and adorned with a card exclaiming, “Happy Birthday! We’ll miss you!”

Today, I did have the eye of the tiger, and I was determined to not go down without a fight. Not only was it my birthday, it was also my final day of work at a job that had become increasingly frustrating, disappointing and demeaning. I took one last look at the card, and heard Katy singing, “You hear my voice? You hear that sound. Like the sound of thunder. Gonna shake your ground,” and I knew I had one last job to do…the Exit Interview.

Three weeks ago, I returned to work after seven weeks of medical leave.  My last surgery had been particularly difficult and while my surgeon considered the surgery a success, I was still in considerable pain. But I am a driven woman, and I needed to get back to work. I was looking forward to catching up with my boss on the progress of several important projects, but when we finally connected on a conference call, I learned that while I was out being an IBD patient, my job was being relocated to a state several hundreds of miles south.  I was more than welcome to go with it, he said, but be prepared to make a lot less money.

Think about it, he said. Go home. Take pain meds. Think.

So I thought…about promises made and not kept…about unprofessional behavior…about derogatory comments…about insensitivity and lack of compassion.  I thought, and then I said, “No, thank you.”

Now, it was my turn tell my HR manager why I couldn’t accept the offer of relocation with less pay. The exit interview…my last chance to claim my legacy and make a statement.

I had spent the night before contemplating which would have a greater impact…a loud, raging diatribe on the inappropriate behavior of senior leadership or a quiet, yet forceful commentary on lost growth opportunities for the business if the current culture is allowed to continue unchecked.

At the end of the day, no matter how angry and hurt I am at my perceived injustices, the people whom I leave behind…the ones who hold doors open for me, wish me a happy birthday and think to leave me muffins on a bittersweet departure day…deserve my professionalism.  They deserve my hallmark calm and objectivity.

For them, I will lay aside my emotions and make a case for change.  I will present data instead of hurt feelings. I will speak eloquently of inclusivity and the benefit of empowerment. As difficult as it is, I will make my exit an example of professionalism, and maybe…just maybe my legacy will be one of change.

I am sad that today, I end more than 20 years as a leader, but I am proud of the way I chose to make my exit. I have made many great connections and many friends along the way, and I hope that my professionalism will make a difference.

What is the most difficult decision you’ve had to make?

Be Your Own Hero in Five Easy Steps

Today, I am raising my arm and giving myself a mighty fist pump!

I am victorious.

IBD

Go ahead…ask me.

I am my own hero, and no matter what you are fighting, I believe you have what it takes to be your own hero too. So after, much consideration, I’m sharing my five-step master plan for pushing through the rough patches and claiming your own victory, no matter what battle you are fighting.

Stiletto Momma’s Five Steps to Being Your Own Hero

1. Know Yourself. Way back in the glorious decade of the 1980s, I was fortunate enough to be a student in the coolest eighth grade teacher’s English class. All of my classmates wanted this woman to teach them the intricacies of grammar and literature. She was the kind of teacher who sat cross-legged on her desk to lecture us on Shakespeare. She chewed gum in class, and while she was probably in her late forties, to the 14-year-olds in her class, she was one of us. She also taught me what I know now to be one of the most important life lessons.

Our assignment that day was to write an autobiography, and we were encouraged to start by thinking about something for which we have expertise. My cool teacher climbed on top of her desk, curled her legs under herself and proceeded to help us brainstorm topics. Around the class we went–each person taking a turn claiming his or her expertise.

“Baseball,” one athletic boy stated with confidence.

“Shopping,” a girl proclaimed, happily.

You might be thinking that girl was the future Stiletto Momma, but while in the present, I do wield credit card and shopping bags like a champion, back then I had yet to experience the joy that comes from retail therapy. Instead I shyly stated my expertise was playing my favorite woodwind–the flute. I had been playing for a handful of years, and I was fairly confident no one else in the class could trill a high C quite like me.

After the last of my classmates had shared their expertise, that coolest of cool teachers jumped from her perched, wagged a finger at her naive pupils, and declared, “Wrong! You are all wrong.”

The class got silent. Some people turned pink from embarrassment, but the teacher continued with her point.

“Everyone here is an expert in only one thing, and everyone here is an expert on the same thing. You are all experts on yourselves. Who knows you like you do? No one. Who knows everything about you? You! You are an expert on you.”

Although, I don’t remember what I wrote in my autobiography, that lesson has stuck with me.

I am the only person who knows absolutely everything about me. I know when the fatigue is more than just the exhaustion that comes from a hard day’s work. I know when the pain isn’t my “normal” pain. I know when something is wrong.

I move on to the next step….

2. Be Persistent. I eventually graduated middle school, then high school, college, and eventually graduate school. Finally, I drafted my first resume, and set about finding a real job. I mailed that carefully embellished document to every newspaper and publication I could find. I had a few interviews, but no offers of employment. I waited and waited for the phone to ring.

One day, the Hubs asked me a very simple question. “Why don’t you call them? Remind them who you are.”

The Hubs is a smart man, and while he may not realize it, he taught me another import life lesson. Make yourself known. Tell people who you are. Tell them you are important, and don’t let them forget about you. Be persistent.

I know my doctor has more than one patient. He’s a busy man, but I am a busy woman. I am a momma; I work a full-time job, and I have a blog I like to maintain with some regularity. I can’t do any of my jobs, if he doesn’t do his.

So I pick up the phone, and I remind him who I am. I’m the one who called yesterday,and left a message telling you that I don’t feel right. If I don’t feel right tomorrow, I’m calling back. I know myself, and I’m not going away until you help me find out what went wrong.

In the meantime, I move on to the next step….

3. Get the facts. My first journalism job was as a reporter for my hometown newspaper. I wrote for the sports section. Yes, me the girl who played in the band instead of on the team. I knew more about playing the fight song during the pep rally than scoring points in the big game, but there I was, covering girls’ high school basketball. I’d interview the coach after the game. Then call my dad to ask him what the coach meant when he gave me some complicated play terminology. I didn’t have Google back then, but I did have Daddy!

Fact-gathering, when it comes to your health, can be a little trickier these days. The Internet makes it so easy to enter all your symptoms into a search engine and find the perfect cyber-diagnosis, but read too much, and you will soon believe your common cold is a rare incurable malady.

Instead of searching my symptoms, I seached for support groups, and got my facts from people like me. People who know my pain–literally. When symptoms moved from nausea to fatigue, they told me to ask for a vitamin level check.

Now, on to step four….

4. Be Your Own Advocate. No one knows you like you do (see step one), and no one is going to stand up for you unless you stand up for yourself. I knew something was making me tired and feel so…wrong. The MIL said I needed to eat more. The Hubs said I needed to sleep more. I knew it was more than that, and my support group (aka my “Crohnies”, because we all have Crohn’s Disease) agreed.

So, back to the doctor’s office I went. “All your blood work looks fine,” my primary care doc said.

“Even my vitamin levels?” I asked.

“Well, we didn’t check those,” she admitted.

Can we check those,” I asked in my most you’re-the-doctor-but-I-think-you-missed-something voice.

She gave me a weary sigh, and said in her best I’m-humoring-my-patient voice, “I guess we could check that if you want.”

Two days later, she called to say my vitamin D was too low, and that may be why I’m so tired! Hmmm….

I was just coming off that victory when the pain started. On any given day, I have what I know to be “normal” pain, but this new pain was definitely not normal (back to step one again). I called my GI…again (see step 2). He saw me in his office, shook his head in sympathy, and said he needed to consult with someone. He’d call soon.

That was two weeks ago, so instead of waiting around to be put on hold, I escalated my complaints to my surgeon, and I didn’t stop until she worked me into her busy schedule. Then, finally, after two months of knowing something was wrong, but being told by experts that I was fine, I had confirmation. My surgeon found it within 15 minutes–an active flare of Crohn’s.

Now, take a deep breath, and move on to the final step….

Be Brave

This step is so important, I wear a reminder on my wrist.

5. Be Brave! I didn’t necessarily want to hear that my Crohn’s was back on the war path after a two year break in the action, but the diagnosis was actually a victory. I knew something was wrong with my body (See how important step one is!), I didn’t let the doctors ignore me (step two). I searched out my facts (step three), and I spoke up for myself (step four).

Now the real battle begins, and all the courage, I’ve been gathering will be put to good use. I’ve done this before. I’ll stock up on foods approved for a low residue diet (really just an excuse to eat all the carbs I want without feeling guilty). I’ll buy the industrial-size bottles of multi-vitamins (because fresh fruits and veggies are a no-no, and that I do feel guilty about).

I’ll push through the pain to play Go Fish with the Young One (because I’m sick, but she’s not), but later we’ll take a break and watch our favorite Nick at Night show, Full House (because those crazy Tanners still make for good TV 20 years after the first episode, and because I need her to know I have a boo-boo in my belly and need to get my rest).

I will be brave!

Go back to step one, and repeat as needed.

You may not have Crohn’s Disease or a chronic condition, but you probably do have something you battle on occasion. We all do, but with a little perseverance and bravery, we can all pump a fist for victory and be our own heroes.

What do you do to be your own hero?

The Remicade Rebellion

Today, I launched a massive assault on my immune system. With a drug called Remicade flowing through my veins, I am living up to my self-proclaimed title of Crohn’s Disease Warrior.

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Crohn’s Disease, along with its IBD sister Ulcerative Colitis, is an autoimmune disease. In most cases, the human body’s immune system is a defender of evil and wrong-doing. When viral cells or bacteria slip through its defenses, the immune system mounts an attack, sending out soldiers to destroy the enemy.

While your immune system does its duty, you feel its effects in the form of fatigue and fever. After a few days of this raging battle, the fever breaks, your energy returns, and you go back to your everyday life. You may even be stronger after the battle because, like all military machines, your immune system has learned lessons from this most recent war and will try harder to not let those foreign invaders breach its defenses next time.

In my case, the conflict is more like a long-term civil war. More than 20 years ago, my immune system received intelligence indicating my digestive system was an enemy combatant and launched a devastating first strike that took months to recover from.

Like all good immune systems, mine learned how to combat against my feeble attempts to overcome it. Each new medication I took or treatment I tried would keep the flames of war at bay for a while, but eventually my immune system would send in spies to locate and take advantage of my intestine’s weaknesses.

About a year ago, we moved on to biological warfare. Remicade is in a class of drugs known, appropriately enough, as biologics. This secret weapon works to block a protein that causes inflammation and painful symptoms. Every six weeks, I send in reinforcements, and the battle continues.

With every assault, my immune system is weakened, giving my digestive system enough time to rebuild the most recent damage. Unfortunately, the price of war, sometimes includes collateral damage. A weakened immune system means the rest of my body goes unprotected from other more common viruses and bacteria. A stomach virus can last 10 days. A cold can last a month, and if I every meet up with super-villian TB, I might be forced to surrender. The reward, however, is worth the risk, and I soldier on.

So, this afternoon, I chatted with my favorite nurse as she started my IV. (She’s my favorite because she always gets my tiny vein on the first stick and because she always asks how my son is doing at West Point.) She flushed the line, then sent in the troops. I pulled up the foot of the recliner and settled in to watch three back-to-back episodes of Law & Order and sip my super-sized unsweetened iced tea with extra lemon.

The war rages on. The Remicade Rebellion is in full force, and one of these days, I might just claim victory!

We all have wars we fight on a daily basis. What’s yours?

Who Stole My Vitamin D?

I just hit a wall…hard.

I was sitting at my desk doing the Stiletto (Working) Momma thing, when BAM! I hit a wall. The same thing happened yesterday…and the day before…and the day before that…and all the days before that for the past 28 days.

IBD

Go ahead…ask me.

The wall of fatigue has been my enemy for an entire month. I’m moving along like my normal self, and then all of a sudden my shoulders sag, my head feels heavy, and I slump in my chair with a sigh, wondering how I could have possibly slept through the night and awoken in the morning feeling just as tired as I did when I turned off the light and called it a night.

Rest is all I seem to do any more, but with little to no relief. I haven’t been to the gym in over a month. My personal email account is backed up, and my friends are wondering where I’ve been, since I haven’t been chatting with them on Facebook.

I’ve been lying in bed. I’ve been traveling back and forth to doctors. I’ve been flinching from needle sticks, and I’ve been watching my blood fill little tubes.

I’ve been living the life of Crohn’s Disease. This time, my vitamin levels are working against me.  With Crohn’s Disease comes various complications such as chronic diarrhea and the ever-popular bowel resection, that result in an inability to absorb nutrients. Combine that with dietary restrictions, and getting the appropriate amount of vitamins becomes a constant struggle.

I felt like I had won the chronic illness lottery when my doc called with the results of the latest blood work. Finally, a positive result–something to blame. Vitamin D deficiency!

Yes!

I did a happy dance, and then promptly rested my weary body on the nearest chair.

Who knew one tiny vitamin could wreak so much havoc.  My vitamin D is only about half the level it should be, and it’s doing it’s best to kick me when I’m down.

But I’m fighting back…with lots of gel-filled supplements, a little sunshine, and a whole lot of rest.

Are you a chronic illness warrior? How do you battle against extreme fatigue?

five-minute-friday* Today’s post is brought to you by Five Minute Friday, the word “Rest” and the letter “D”. Think you can hang with the fastest typing bloggers on the Internet? Join us on Lisa-Jo Baker’s site. I’ll read your post after my nap!

Race to Wait: The Rantings of a Crohn’s Patient

Hurry up! Wait!

Hurryupwait!

Hurry up. WAAAIIIITTTTT!

This is my life battling Crohn’s Disease.

I hurry and race to the doctor for my appointments just to wait hours in waiting rooms and examine rooms.

Remicade Infusion

Drip. Drip. Drip. A Remicade Infusion at work. (Source: Flickr Mira d’Oubliette)

I speed to be on time for infusion treatments, just to sit and wait while the IV slowly drips into veins.

I rush out on lunch breaks to have blood drawn at the hurried request from a medical assitant. Then wait weeks for results.

All this racing and waiting on blood work, and now you, dear medical assistant, tell me one test looks a little low. Increase this med.

Okay, that’s great. I’ll do that. But honestly, in your race to bill me for your services and your lab work, you’ve forgotten the reason for the tests in the first place. I want to stop that chemical cocktail that sets my joints to screaming…makes my skin itch until it feels like fire…and is turning my curly hair straight. Can I do that??? Did the bloodwork tell you that like you said it would?

Oh… (Confused silence on the other end of the phone.) I’ll have to ask the doctor.

So now, I’m back to waiting for the next leg of the race…pass a message to the doctor, hope he works late on a Friday, then try to squeeze in the next treatment, the next blood test, the next exam.

This race is exhaustingly frustrating.

Stiletto Momma

Five Minute Friday*This post was frantically written for Five Minute Friday with today’s writing prompt of “Race” which (for good or bad) I read about not long before I got the results of this latest round of bloodwork. What are your thoughts on “Race”? Join Five Minute Friday, and let us know.

Bring It, 2012!!

Last night as everyone was counting down 10…9…8…7…6…5…4…3…2…1…, I was thinking, “Here we go again.”  Another year. Another set of resolutions. Maybe this is the year, they will still be with me when the ball drops on 2012.

I have a few things I’d like to do in 2012–some of them ambitious and some just general common sense things most people resolve to do every year.  So, for the record, here is my list of things I’d like for the new year, and how I’m doing with them as of 8:00 p.m.  on January 1.

In 2012, I will:

1. Do something new…

I’d like to learn photography and how to Photoshop more than just a box with some words in it. I’d like to write a book about the odd dysfunction that follows my extended family, but somehow skips over and around my immediate fam. Those are longer term goals, though, and they require a little more planning and organization than I had time for in the latter half of December when I first started thinking of this most unique of my New Year’s resolutions.

With those on the back burner for the time being, I’ve decided to start a new blog. To be honest, I’ve blogged before.  Maybe you’ve run across “Tales From The Waiting Room” in your search for the perfect online reading material.  That’s me…chronic conditions and poor view of all things healthcare related.  I stuck with that one for a few months, but I found it to be too limiting, and honestly, too depressing.  I live with Crohn’s Disease every day.  I don’t think I really want to write about it all the time.

So, here’s a new blog–same author, same challenges, different attitude! I am so much more than a patient. I have a family that includes a pre-school child, a college child, a husband, live-in MIL and a dog. I am an internet marketing guru (self-proclaimed).  I am a woman who lives for a shopping spree and has been known to accidentally program the GPS for the nearest outlet mall on the way home from business trips.  I also wear the title “high maintenance” like a badge of honor and am encouraging my four-year-old daughter to do the same.

I am Stiletto Momma!

Resolution 1 progress-to-date: Resolution started (even if the definition of “new” has been twisted a little)!

2. Get Moving…

I used to be known as the Jane Fonda of my social circle. I would head out to lunch with my water bottle in tow so often that the rumor around the water cooler was that I was an aerobics instructor on the side. That was a total fiction, but I do have to say I was flattered by the assumption.  I used to fit in at least four workouts a week–cardio on the elliptical, weight training, Body Pump, Zumba, yoga, pilates.  I subscribed to Fitness magazine and read health and nutrition books for pleasure.

Then Crohn’s Disease kicked my butt back to reality. I’d been in remission for over 10 years, but in 2010, after over a year of “unexplained” pain, I ended up with two abdominal surgeries to fix several strictures in my small intestines.  I was finally starting to get back into the exercise scene (Zumba, how I loved you!) when I started having new abdominal pain.  This time it was sensitive to any pressure on the abdomin–such as the kind you get when you do sit ups, crunches (even the hip-wiggly Zumba kind), and just about any kind of exercise that uses core muscles.  The docs finally found a fistula (another Crohn’s complication)–think of it as a tunnel from the intestines to another organ.  Yeah, ouch is right!  So, we tried a lot of meds, and now I think I’m ready to give the gym another shot.

I have my Zumba DVDs on order, and they should be here by the end of the week. (Who would have thought that distribution for Amazon.com shuts down between Christmas and New Years?)  I was going to try P90X, but I thought that just might be a little too aggressive for someone returning to exercise after a seven-month break! I plan to hit the gym with the hubs on the weekend for some quality time with the elliptical, and maybe if we’re lucky, I’ll shake the dust off the weight equipment in my home gym.

Resolution 2 progress-to-date: Well, I’ve thought about it a lot today. I went for a walk yesterday…and it was in the latter half of the afternoon, so techincally, I can carry it over to today. Right? It’s a rounding error! Okay, I’ll schedule gym time for tomorrow at 10:00 am.

3. Try to eat better…

Yes, this one sounds really lame and something six million other people have resolved to do, but it might just be the hardest one for me to stick with. It all comes back to that CD thing.  Because so many things aggravate Crohn’s Disease, those of us with it tend to eat the same things over and over again.  It’s similar to the old addage “if it ain’t broke, don’t fix it.”  If it didn’t hurt going down this time, add it to the heavy rotation slot on the menu. Fruits and veggies are now a must along with a good mix of carbs and protein. (Sorry, I can’t partake in the low carb diet.  If I take carbs off my menu, I won’t eat anything. That’s been proven.) And snacks should have some nutritional value. Chips and cookies do not count!

Resolution 3 progress-to-date: In the plus column, I didn’t eat a Pop Tart for breakfast. I forced myself to eat a bowl of cereal (low sugar) before I made the first cup of coffee. I also had a veggie burger for lunch. In the minus column, I had popcorn for dinner, but it was done while spending quality time at the movie theater with my daughter, so it was pretty much justified. Tomorrow, I’ll work in some fruit!

All in all, I’m excited for 2012 and Stiletto Mamma. I cannot wait to purchase the first pair of shoes for the new year. My daughter needs some new sparkly ones too. My son is heading back north for college in a few days, and I’m sure he’ll need something for plane trip…maybe a Snuggie to keep away the draft.  I have a trip planned for myself later in the month, and my route goes right past my favorite outlet mall! And I’m sure as the year goes on, I will have some of that family dysfunction to share.

Happy shopping! (It’s considered a form of exercise!)

Stiletto Mamma