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?

 

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2014…The Year Everything Happened for a Reason

Last year at this time, I couldn’t wait to say goodbye to the old, tarnished 2013 and hello to the shiny new year that was to be 2014. Its predecessor was unlucky from day one and just kept battering me as if it was fighting to live up to its name.

2014 dawned bright and clear, though, and helped reinforce my belief that everything happens for a reason. In the final months of 2013, I underwent not one, but two surgeries with a job layoff sandwiched in between. In hindsight, that pseudo-job relocation that forced me into unemployment actually helped me rehab and take back my power.

Everything happens for a reason.

IBDMy former boss didn’t understand my IBD and the conflicting nature of the invisible illness that is Crohn’s Disease. Every request for a day off was met with skepticism and silent accusations of “liar”.

I know I would have put off that second surgery if I had still been working in that environment. As it turns out, Employer X did me a favor and paid me to take four months off. I was able to focus on my physical and emotional health and find the place I am meant to be.  In mid-March 2014, I received my final severance check from Employer X on the same day I pocketed my first pay check from my new employer–a top-rated healthcare company that puts value on its employees’ physical and mental health.

Everything happens for a reason.

Bsnowmanefore going back to work, however, I had to endure 2014’s winter weather complete with record low temperatures, repeated ice storms and enough snow to build not just a snowman, but an entire Frosty family and village complete with snow fort and bobsled trail.

Had I been working during those bleak months, I would have had to ask for yet more time away from the office to accommodate the record number of school closings. The MIL would have also had to risk her health and well-being to collect the mail or the newspaper and to let the dogs out to do necessary doggie things. Instead, I had the privilege of walking the dogs in single digit temperatures and sporting fur-lined snow boots to chip ice from our sidewalks.

Everything happens for a reason.

KeyboardIn between sub-zero walks around the block with my favorite four-footers, I discovered the enjoyment of sitting by the fire and keeping my fingers warm with furious typing. Stiletto Momma (the blog, that is) grew by over 70 posts in 2014.  Most of those posts were penned between the months of January and March and my longest blogging streak in November as I completed my first NaBloPoMo (National Blog Post Month).

Everything happens for a reason.

2013 might have been one of the worst years I’ve experienced, but I truly think it needed to be so trying, so I could see the value of the lessons learned in 2014. This year was not without challenges, but with a little perspective and understanding even the tarnished spots can be rubbed to look shiny and new.

Here’s hoping 2015 brings more of the same!

For a closer look at all the great things that happened on Stiletto Momma this year, check out this awesome infographic my friends at WordPress put together just for me!

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 8,200 times in 2014. If it were a concert at Sydney Opera House, it would take about 3 sold-out performances for that many people to see it.

Click here to see the complete report.

Advice to a Teenaged Me

The radio is normally my companion in the car. On the way home from work, I usually catch up on the day’s news with 45 minutes of CNN and Wolfe Blitzer in the Situation Room.

If I’m just driving from errand to errand on the weekends, I’ll switch to the iPod and jam to Katy Perry, Pink or Adele. I need a regular dose of girl power anthems.

This morning, like most mornings, I tuned into my favorite local radio station to catch the end of the morning show. It’s usual mindless babble quite frequently evokes a chuckle on the way to work and helps clear the fog that my first cup of coffee didn’t quite get.

Today, the DJ asked listeners to call in and tell the world…okay, maybe just the city and surrounding areas…what advice they would give if they could go back in time to their high school years and have a heart-to-heart with their teenaged selves.

I had just pulled into my parking spot when the first callers starting commenting, so unfortunately I missed most of the sage words of the now-wizened. I couldn’t get the question out of my head, though, and as I walked toward the building, I pondered what I would actually tell the quiet, freckle-faced, curly haired red-headed me.

Buy the Shoes!

I buy shoes of all kinds, even cute little shoe-themed note pads!

Within two steps, I knew without a doubt what I would tell her.

“BUY THE SHOES!”

Does that sound superficial? Yes, I suppose it does, but the fact remains that’s the best thing I could say to my young self–the girl trying to find herself, the one trying to discover who she is and where she fits in.

When I look back over the decades since I graduated from high school, I know exactly when I found my confidence. Odd as it may seem, it was in a hospital room shortly following my IBD diagnosis. This was well before the internet, satellite TV and an endless selection of iPad apps. I had nothing to do to occupy my time until my mom showed up with a stack of magazines.

On the top, in all its glossy glory, was the latest issue of Glamour. I flipped through the pages, turned back to the beginning and read it cover-to-cover again. I’m pretty sure I mailed in the subscription coupon on my way home after being discharged.

The pictures and articles inside made me happy at a time when I desperately needed something to evoke a smile. A life-changing diagnosis tends to make little things like that seem huge.

When I felt up to it, I went in search of some new shoes…a new sweater…a new skirt…and I was happy. Pretty soon I was walking taller in my new shoes, and happy was turning into confident. I spoke up more. I took more chances, and I started to define myself as a strong woman with a vision.

So, yes, if I could travel back in time to my high school years, I would stop that girl in the hall, take her by the shoulders, and tell her, “Buy the shoes.” It’s a version of what I’ve told my son as I’ve tried to counsel him through hard decisions, and I’ll tell my daughter the same thing when life inevitably gets in her way too.

“If it makes you happy,” I’d say, “buy the shoes…change your path…take a risk. Life is too short and will have too many rough patches to be stuck doing the things that meet someone else’s goals. Do the things that make you happy. Do the things that make you glow and smile and sparkle like the brilliant jewel you are. Do the things that make you YOU!”

Buy the shoes!

writing-101-june-2014-class-badge-2**Today’s post is the first in a series of assignments for WordPress Daily Post’s Blogging University June course, Writing 101:Building a Blogging Habit.

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.

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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!

(Re) Defining Myself

cc_week_iconI have lived more than half my life with illness.

I have had seven surgeries to treat my disease, and the eighth is scheduled for later this month.

I no longer have a colon. Twice in my life, I have endured the challenges and embraced the freedom of an ostomy.

I know more about the inner workings of a hospital, the intricacies of medical insurance and the art of medication pronunciation than I care to.

I am one of 1.4 million Americans with Inflammatory Bowel Disease (IBD)–a classification of autoimmune diseases characterized by severe abdominal pain, nausea and diarrhea.  I have been diagnosed with both forms of IBD–Ulcerative Colitis and Crohn’s Disease.  Although I was originally diagnosed with UC (the form of IBD that attacks only the large intestine), once my colon had been removed and examined, my doctors reluctantly changed the diagnosis to CD (the form of IBD that can attack any part of the digestive system from the mouth to the anus.)

I used to say, “I don’t let IBD define me.” I didn’t want to be the sick person everyone felt sorry for, and I had a strict don’t-ask-don’t-tell policy. I talked about my IBD on a need-to-know basis. Doctors needed to know, and that was about it. Neighbors? No. Co-workers? No.

Who would want to know anyway? The symptoms and challenges of Crohn’s Disease and Ulcerative Colits are not exactly polite dinner conversation. They are uncomfortable to talk about, and they are hard to hear. I kept it all to myself….until one night a few years ago when the Hubs and I went to a New Year’s Eve party.

As usual, the guys were sucked into the man-cave and the women drifted to the kitchen. I joined a group of women at the island and listened to another momma talking with deep concern about her 20-something son. His stomach was…”bothering” him, she said, searching for the most delicate word she could find for his ailments. “And,” she whispered, “he’s been passing blood.”

I saw the fear on her face and the horror on those of the other women listening. Some even started to drift away. I flashed back to the time not long after my twentieth birthday with I first saw blood in my stool. I remembered how scared I was and how I didn’t know what was happening. I remembered how I ignored it for months, thinking it would just go away as quickly as it started.

But it didn’t. It only got worse, and finally I found the courage to tell my own mother that something wasn’t right. She immediately called our family doctor, and by the end of the day, I was admitted to the hospital, starting my journey to an IBD diagnosis.

Now in this kitchen with this other momma scared for her son who was only a few years older than my own, I knew what she needed to do. She was afraid for her baby, but she didn’t know what to do or how to talk about the problems.

I waited until she was alone, then I quietly approached her. “I know what your son is going through,” I told her. “I have Crohn’s Disease. If you need the name of a good gastroenterologist or if you have any questions, please let me know.”

She hugged me and thanked me and then declared, “I never knew.” I had worked in the same building with this woman for years, and she never knew I was sick. Crohn’s Disease and Ulcerative Colitis are invisible diseases. When some of the worst symptoms are managed by medications like mine are, I don’t look sick. Inside, I might feel like I’ve swallowed glass, but on the outside, I look like everyone else. If I had been more open about CD, maybe she would have known, and maybe she would have found an excuse to stop me in the hall or knock on my office door. Maybe she wouldn’t have needed to be as frightened for her son.

Since then, I have been more open about my disease, and most of the time when I mention my CD, I hear, “Oh, my husband’s assistant has that,” or “My brother-in-law has something like that,” or “I wonder if my friend’s daughter has that.”

I no longer say that Crohn’s does not define me. By my very existence it does define me. It makes me the strong woman I am today. It makes me the caring momma I am. It makes me the hard worker I am. I have accomplished everything I have in spite of, and therefore because of, Crohn’s Disease.

This week is Crohn’s and Colitis Awareness Week. Do you know someone with Inflammatory Bowel Disease? With more than 1.4 million of us in this country, chances are you do. Learn more about the diseases at ccfa.org, and look for more posts on living with IBD from your favorite stiletto wearing blogger this week.

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?

G.I. Jell-o to the Rescue

Today I fast. Tomorrow I swallow a camera.

No, I won’t be gnawing on my Canon Rebel out of desperation. I won’t be staving off starvation with my smartphone either.

These are the very (un)fashionable accessories I get to wear for my capsule endoscopy. The belt transmits the pictures. It malfunctioned last time.

These are the very (un)fashionable accessories I get to wear for my capsule endoscopy. The belt transmits the pictures. It malfunctioned last time.

I am suffering through a liquid diet today because tomorrow morning I will swallow a multi-vitamin-sized wireless camera during a capsule endoscopy. I won’t go into all the gory details, but my surgeon (part of my IBD medical team) needs to get a close-up view of my small intestines. Traditional endoscopies and x-rays cannot provide an adequate picture for her, so I will swallow this relatively small camera. It will take thousands of pictures as it navigates the twisty turning loopdiloop of my digestive system.

Unlike most endoscopic procedures, it does not require anesthetic and is completely painless.  Unless, of course, it gets stuck in the labyrinth of my small bowel.

The technology of it is fascinating.  The prep?  Not so much. I will endure a full day on a liquid diet followed by a giant bottle (a whole 16 ounces!) of magnesium citrate. Trust me when I say this isn’t the kind of beverage you pop the top off voluntarily.

I’ve done this twice before, most recently about 10 days ago. I fasted. I stressed about that whole getting-stuck thing. I gagged down the mag citrate. I gulped the capsule…and everything went smoothly from there. At least I thought so, until three days ago when the nurse from the endoscopy unit called to meekly inform me the equipment that records the images malfunctioned.

I get to do it all over again, Monday! Which is really fine since I should be able to get the results by the end of the week.

But that means prep day is today.  Sunday…the day I usually spend in the kitchen cooking and baking for the week. I had planned to spend the day baking boodle for the Older One–a box of cookies and snacks meant to boost the spirits of homesick West Point cadets. (For a full definition of boodle, check out this post.) Then I would move onto a new pasta sauce recipe to finally use some of basil blossoming in the herb garden.

A liquid diet on Cook-Till-You-Drop-Day? Really?

That means no sampling the sauce and no taste-testing the Fudgey Chewy Peanut Butter Chip cookies. What if the cookies don’t have the right cocoa to peanut butter ratio? What if I over-season the sauce? What if my willpower gives out, and I can’t keep myself from licking the beaters?

But wait! Maybe I can be spared all that turmoil. Maybe a hero will save the no-solid-food day. Maybe…just maybe…

Yes! GI Jell-o to the rescue!

Long before Bill Cosby introduced the world to Jell-o Jigglers, my momma introduced me to a thick, chewy, liquid-based treat she called Finger Jell-o.  She’d mix it up on camping trips, cut it into squares, and we’d all giggle as it wiggled its way into our bellies. It’s been a special treat in my family for years. Even the pups enjoy chasing a chunk around the kitchen floor on occasion. I usually whip up a batch on fasting days because it actually involves chewing, and I can trick my brain into thinking I’m actually eating something.

A few years ago when the Older One still lived at home and enjoyed playing jokes on his poor unsuspecting momma, I had set aside a pan of our favorite gelatin snack in the refrigerator to set. The next morning, I retrieved the pan with the intent of slicing it into bite-sized pieces.  I pulled the plastic wrap off and gazed at my beautiful sparkling orange jello and a… Wait a minute.  What’s that? That can’t be a…? Yes, it is!

Jello

The original GI Jell-o.

There, suspended in orange (sugar-free) jiggliness, was a GI Joe rifle!

I promptly called for the Older One…using both his first and middle names, so he would know I was serious. He walked into the kitchen, and tried unsuccessfully to conceal his grin as he declared, “Hey! How’d that get in there?”

My anger subsided when he confirmed that he had at least washed the plastic weapon before sliding it into the pan. We cut around it and continued to enjoy the Jell-o.

Now, instead of Finger Jell-o, I make GI Jell-o as a tribute to the hero of toy departments everywhere and to my son who is growing up to become a real-life GI Joe himself.

If anyone could rescue me from a day longing for food, it would surely be GI Jell-o. Last night I used four cups of boiling water to melt three small packages of Jell-o and four packages of unflavored gelatin. I mixed it all together in an 8 X 8 inch pan. Covered it with plastic wrap and put it in the fridge to set overnight.

This afternoon as my sauce bubbled and my cookies baked and my stomach growled, I pulled the pan from the refrigerator.  I did not see any plastic play-things swimming in its depth, but I smiled nonetheless.

GI Jell-o saves the day again with some fruity chewiness and a happy memory.

What gets you through a rough day?

Be Brave

I wear the words “Be Brave” etched on stainless steel wrapped around my wrist with strips of purple leather that represent the official color of Crohn’s and Colitis awareness.

Be Brave

“You are braver than you believe…” ~Christopher Robin to Winnie the Pooh.

These are the  words that get me through each day as a Crohn’s Disease warrior.

When I get out of bed and my first thought is, “How much will I hurt today,” I must be brave.

Each day, I look at my calendar and weigh all the tasks on my to-do list against my level of pain.  I wonder, “How am I going to get through this day?” before I look to my wrist and read the answer–“Be Brave.”

When the Young One looks at me with sadness, and asks “When are you going to be done being sick?”, I think to myself, “Be Brave”, as I try to find a way to tell her I will always be sick, but some days will be better than others.

I think of the events on the horizon–dinner parties, birthdays, homecomings, project deadlines, and I know I can’t do it all right now. So I tell myself to “Be Brave” as I make the decision of who to disappoint today. The Hubs?  The kids? The boss? Myself?

Some days, giving in and going home is my bravest act.

When food hurts…when another doctor’s appointment interrupts the day…when I ask for another day off…when I need another ride to the hospital…when I reach for the pain meds…when I can’t sleep at night…when I look fine on the outside, but feel like my insides are on fire…when I pray every night that I haven’t passed this horribleness to my son…when I try to find the simplest answer to a polite “How are you?”…I remind myself , “be brave”…”Be Brave”…”BE BRAVE!”

I must be brave to face the challenges of my disease. There is simply no other way to get through it.

Do you or someone you love need to be brave to fight a disease? Check out Bravelets.com to find the one that helps you fight the hardest. Bravelets will donate $10 of your purchase to the associated cause.

***Today’s post is brought to you by Five Minute Friday and the powerful word “Brave”,which, by the way, popped into my head last night as I lay sleepless once more. As I tried to find something positive to think about, my mind wondered with anticipation to what I would find in my inbox when I went searching for today’s word. I was truly shocked when I actually saw that word–my word–as the prompt for today.  I guess someone else thinks I need to write about this.  Magical things happen on Lisa Jo Baker’s site every Friday. Please join us.

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?