GONE AT LAST

A song for you, my Friendos.

Click here to hear it.

xo

ONE YEAR LATER

Today marks another anniversary. My last surgery took place one year ago today. It is hard to believe an entire year has already passed.

I'm happy to report that I am feeling quite well. I still have rough days each month, but they don't compare to the misery I experienced before my surgery. Endo no longer consumes my every thought, nor does it stop me from living a happy life. I am truly blessed.

I just read a few of my posts from last year. It's difficult to revisit that hell. I want to believe I will never be in such a terrible condition again, but I know my endo is unruly and unpredictable. So I try to remember to enjoy every possible moment.

I know I haven't been posting much on here lately, but my endo sisters are always in my thoughts and prayers.

Cheers to one year!

SWEET & BITTER MOTHER'S DAYS

Mother's Days of my childhood were dreaded occasions. I preferred the holiday to quickly pass as I kept my head down, eyes focused on the floor. I tried to ignore the vacant, hollow space in my life. The holiday highlighted the enormous difference between me and every other child I knew. I no longer had a mother. She had been dead for three months by the Mother's Day of my kindergarten year.

As each Mother's Day approached and projects were proudly or mindlessly completed by my classmates, I hoped for invisibility. I silently worked on my project to give to my grandma. My objective as I created my craft was to secure a facial expression void of my thoughts. I can't imagine I was good at the task then because I certainly can't pull it off now. My emotions tend to be as obvious and readable as the words on a giant, flashing billboard.

Years passed. I studied my friends' relationships with their mothers. I envied most of them and understood none of them. I continued to celebrate Mother's Days with my dear grandma.

Then came the Mother's Day when my belly swelled with the life of my son. A new meaning for the holiday--a never-experienced joyous celebration--was growing, soon to be born. My life as a mother about to unfold. Another first in my life I could not share with my own mother. My grandma lived to share the first year of my son's life with me. Three days after his first birthday, I lost her too.

I thank God for safely delivering my son to my arms and trusting me with his care, for the blessings he brings, for the life, laughter and love that has shined on my family for the last sixteen Mother's Days.

I miss my mom and my grandma; I am blessed with my son. It's the forever paradox of my Mother's Days.

I wish a beautiful Mother's Day to all of my readers. I know I am not the only one whose sadness is triggered by this holiday. Other daughters who miss their mothers understand my pain. Women who yearn to be mothers experience sorrow. Mothers who have lost a child mourn. My prayers are with all of you and I hope you have loved ones to offer you support today and always.

HER SUNSHINE

Today is the day of my Momma's birth. She would have turned 60 years old. I shared my celebration of her birthday with you last year. It started a new tradition and my family is celebratng her life and birthday again this year. It's difficult not to be sad when I think of her, but I am trying not to let my sorrow shadow the beauty of her life.

Momma's favorite song to sing to us was You Are My Sunshine. I've always carried her tune with me. I sang it to my sweet son countless times. Her sunshine lives on in her family. Her love radiates through all of us.

I wonder how she would have wanted to spend her 60th birthday. I wish she was here--today and always.

Happy birthday Mom.

HELP RAISE AWARENESS

Wait, it's the end of March already...how did that happen? (And why is the ground covered in snow??)

On the last day of Endometriosis Awareness Month, I would like to post a friendoly reminder about the Endometriosis Awareness Petition. If you haven't already, please take a moment to sign it and spread the word to others. I am overjoyed each time I see the signature count rise.We encourage everyone to sign and share. Click the blue box below to be redirected to the petition page.

Endometriosis needs attention from the general public and the medical community. Far too many people have never heard of this common incurable disease. Unfortunately when endo does get media attention, myths and misinformation are often spread.

We have to fight and speak up. Every voice counts.

March may be over tomorrow, but our need for endometriosis awareness does not stop in April. It lasts all year.

Thanks to all the people who took part in endometriosis awareness this month. You are appreciated.

Thank you for your support!

MY 1ST BLOGIVERSARY

I just celebrated my first blogiversary! I can't believe an entire year has passed. Thanks to my awesome friendo Alanna for sharing the blogiversary celebration idea. You can read Alanna's post here, who was inspired by her friend Kass.

I created my blog in the midst of the most difficult period of my life. I felt scared, isolated and overwhelmed as I suffered in terrible pain each day. I overcame my fear of entering the blogosphere and decided to share my story. I reluctantly reached out to the world to discuss the personal topic of my health. I didn't know if anyone would ever read my words. I was unaware of how many other women were blogging about their lives with endometriosis and other chronic illnesses.

I never could have guessed the blessings I would receive from writing my blog. I have met wonderful friendos. We share our triumphs and tribulations as we navigate our complicated journeys with an incurable disease. My friendos help me remain positive, humorous and hopeful. I am inspired by their support and understanding. 

A whole year has come and gone filled with varying emotions, circumstances and issues. I can look back on it now with a new perspective. My posts, like a rear view mirror, reflect a year's worth of my reality: the pain, miracles, despair and elation. My blog helped me realize I want to write a book, a memoir, about my life with endo.

A year later, I haven't run out of topics or ideas. What a lovely surprise. I'm excited to see what the next year will bring!

If only I could figure out how to share cupcakes on my blog...

MERRY GIRL

March has flown by and Endometriosis Awareness Month is almost over. I've been thinking about all of my endo struggles. I never could have made it through my worst times without my loved ones. It's difficult to watch someone you love suffer in constant pain. I recognized their feelings of helplessness and worry. Today I want to share one of the stories of support I received from my family.

When I was very ill, I spent every minute in my home. It was impossible for me to handle everyday tasks. I was nauseous and doubled over in pain, not an ideal scenario for toilet scrubbing or vacuuming. When you're at home all day, you're forced to constantly interact with the filth and clutter. You have to look at it, walk by it, shuffle it around and dig through it. You are constantly reminded you aren't well enough to complete the simplest of tasks. I felt worthless and guilty.

During this time, my aunt gave me the most thoughtful gift. She arranged for Merry Maids to deep clean my entire house. Professionals had never cleaned my home. The idea thrilled me.

Before their arrival, my family sorted our junk and put away the clutter. People joke about cleaning before your cleaning crew arrives, but you really do need to declutter so they can thoroughly clean.

I don't know about merry, but the maids were nice and sweet. I was very merry though! My house had never been so clean. Every surfaced sparkled. They cleaned behind my fridge and furniture. They polished my ceiling fans. The windows and mirrors were spotless and the sinks shined. We could have eaten off the floors.

I rejoiced in the cleanliness of each space.

After the deep cleaning, it was much easier for us to keep our home tidy. My feelings of guilt diminished. I felt at peace and comforted in my home.

I was so grateful for my aunt's sweet gift. My clean house sincerely renewed my body, spirit and mind.

If you're looking for a way to help a sick loved one, helping her achieve a clean house is priceless.

ENDOMETRIOSIS AWARENESS MONTH: FINANCIAL FALLOUT

I am happy to share the following post for Endometriosis Awareness Month.

My friendo Jeanne for has been amazingly supportive since I started blogging (almost one year ago). She was the first person from cyberspace to leave me a comment on my brand new blog. Ever since then, she has been an incredible friend to me. Her blog, Chronic Healing, is wonderful and informative. She is always looking out for endo patients in many ways. I am so blessed to have her as my friend. I was so honored when she asked me to write a guest post for her blog for Endometriosis Awareness Month. Today, we are cross-posting my guest post here and on her blog. I highly recommend checking out her other posts for March and perusing her archives.

Here is my guest post for Chronic Healing:

Endometriosis Awareness Month: Financial Fallout

I was diagnosed with endometriosis six years ago after years of pain and misery. My life has changed in many ways because of my disease. Lately, the financial consequences of my endo weigh heavily on my mind. The largest financial toll has been over the last year.

I was incapacitated by my endometriosis symptoms in January 2010. My endo pain flared & raged and didn’t relent for months. I was unable to work. When my FMLA time ran out, I was given two medical leave extensions from my employer. I was healing from major surgery when my second extension expired and I was fired from my job. My employer said I “voluntarily abandoned” my position in a shady attempt to prevent my unemployment benefits.

I would have been able to return to work the week after I lost my job. I fought through two appeals with my former employer to receive unemployment.

The majority of our financial burden fell on my husband. Without him, I would not make it financially. My monthly unemployment amount isn’t enough to even pay my mortgage, not to mention my other bills. I am not complaining; I am grateful for the unemployment benefits. Still, the truth is, it’s tough to survive on the amount I receive. When my weekly benefit amount was determined, three months of my FMLA time were factored into the equation. In other words, three big fat zeroes were included in the average. Those zeroes did not help my cause.

I have been well enough to work for months but I haven’t had any luck finding a job. As the blank space widens between the present and my last job, I know my chances of finding work grow slimmer. How do I explain my joblessness to potential employers? It’s quite a dilemma. There’s no good response. The truth won’t help me secure a job. It’s hard to imagine an employer excited to hire a person who was too sick to work for six months. Besides, my medical condition and history should be private. The only other option is to be untruthful, but there isn’t a lie I can conjure to adequately explain my situation. Employers don’t like gaps in employment, period.

Now, add in all of the medical bills I acquired over the six month period -- two surgeries, three ER visits, several doctors’ appointments, and expensive medication. Trust me, the math is depressing. When I was fired, I had just met my insurance out-of-pocket maximum for the year. I had to start all over with my new insurance. (My difficulty finding insurance coverage is a whole other story). The only insurance I was able to obtain comes with a hefty $5,000 deductible and they don’t pay a penny until I hit that amount. Ouch. Since I have no clue how my endo will progress from this point, I have no idea what medical needs may arise. Any medical care will be expensive. I guess I was lucky to even find an individual insurance plan though; my husband was denied coverage by every local insurance company due to a pre-existing condition.

My list of financial worries goes on and on and on. I don’t know if I’ll ever get back on track and it’s terrifying.

Most days, I don’t let money concerns consume me. I remind myself of all of my blessings. I try to keep it all in perspective and remember it is just money. However, I do have days when the weight of my financial worries collapse upon me and make it difficult to breathe. I need to have faith and believe I will make it through this tough time. When I get stressed about money, I have to remind myself that my financial troubles pale in comparison to the physical and emotional pain my endo symptoms have caused me.

LUCKY IRISH GIRL

Thanks for all the love and support friendos.

I am feeling better today. Just in time too, because my friendo scored us front-row seats to a local university's fashion show. I'm excited. I've never been to a fashion show. I need a girls' night out.

Happy Saint Patrick's Day! I just finished some errands and enjoyed seeing all the green-clad folks about town. I happen to be an Irish girl, so I particularly love this fun holiday. People always seem cheery on St. Patty's Day. (Which may or may not be attributed to the green beer and shenanigans).

I hope you are enjoying your day!

POSITIVE

I try, every day, to be positive. Right now, the only thing I am positive about is that I'm scared.

I spent the last week suffering (on and off) through my endo symptoms. My cramps came earlier than usual and they are still causing me grief. They should be gone by now, but they are worse than yesterday. Going to the bathroom tonight was painful, and it brought back terrible memories of when my endo was at its worst. I can't stop thinking about what I cannot see. Do I have new lesions? How fast are they growing? Where are they growing?...

I think what's scaring me the most is the difference in my symptoms this month. Since my surgery, my "normal" experience has entailed: pain one or two days before I start my period, an increase in pain when I start to bleed, then each day the pain slowly subsides. Usually by the third day, I'm almost fine. I have not followed the pattern this time. My cramps don't usually come and go. They stay and follow their normal pattern, and then they go away until next month arrives.

This month, I started a new workout and nutrition plan. It has been going quite well and I thought it might be helping my symptoms. I was so proud I was able to continue my workouts through my cramps. But today I just couldn't do it. I was in too much pain.

I'm not sure what all of this means. I'm probably over analyzing every little detail in my head. That's what worry is, after all.

I feel vulnerable to my biggest fear: I don't know if I have the strength to go through the level of misery I experienced last year. I can't imagine returning to that dark nightmare.

Am I overreacting? I have no idea. I wish I could see my insides. 

I know these feelings will pass. Tomorrow is a new day and I'll likely start to feel better. But tonight, all I want to do is cry.

Sometimes, the lining just ain't silver.

EAR DRUM

Hey Friendos,

Sorry I have been MIA. I came down with a nasty cold. The germs must be happy here because they are refusing to leave. I went to see my doctor because I was convinced I had the flu. Every single muscle in my body throbbed and ached. Since I've had three hospital trips due to the flu, I didn't want to mess around. Turns out, I didn't have the flu. However, I do have a wicked ear infection. I was shocked since my ear wasn't really bothering me. Plus I haven't had an ear infection since I was a child. Do adults even get ear infections? Apparently, yes, they do. She prescribed antibiotics and sent me home. By the next day, my ear spoke up and it has been driving me nuts every since.

Then a few days later, I woke up to a drum beating in my ear. It's like I can feel and hear my pulse inside my ear. It is terribly distracting and annoying. It also pops & cracks and feels clogged up, similar to airplane ear. And it hurts. In other words, it's no fun at all.

Of course, I googled it right away. I found a disorder called Pulsatile Tinnitus and read accounts from people who have been dealing with this pounding for years. It's a scary thought; I don't know how someone could continue to cope with this problem. So I'm hoping it will go away with my ear infection. (Please, please, please). It's hard to think and write in this condition.

I know how she feels! :(

I am excited for March because it's Endometriosis Awareness Month! I am looking forward to participating, ear problems or not. 

LEFT TO TELL

Welcome to the second Love Beats Hate blogging event! I'm so happy you stopped by today. I have an extraordinary story of love to share with you.

I was introduced to Immaculée Ilibagiza while reading Inspiration: Your Ultimate Calling by Dr. Wayne Dyer. I promptly ordered her book, Left to Tell, and entered Immaculée's heart wrenching experiences during the 1994 Rwanda genocide. The horror of her ordeal is difficult to read; the truth is sickening. Her inspirational message of forgiveness and faith is an extreme example of love prevailing over hate.

Home from university to celebrate Easter, Immaculée awoke to a nightmare. Her family listened in disbelief to the radio reports, their only contact with the outside word. President Habyarimanahe had been murdered and broadcasters called for Hutus to attack and exterminate their Tutsi neighbors. A genocide had begun.

Immaculée fled her home before the savage killers arrived. She and seven other women were hidden in a pastor's tiny bathroom, a mere four feet long and three feet wide. The eight women were confined in this space for three long months. They were cramped together--fearful to move, speak or even breathe. Aware of the brutality just outside the walls, they waited in silence. Bloodthirsty killers searched the home several times, but the women remained undiscovered. The concealed women clung to their only protection--their muted prayers.

As I read her words, I tried to picture myself in this terrifying situation. It was impossible for me to fathom.

The massacre continued as innocent Tutsis were hunted, tortured and slaughtered. Faced with the sadistic murders of her beloved family and friends, Immaculée felt the roots of hatred begin to grow in her heart. She prayed to God, "Please open my heart, Lord, and show me how to forgive. I'm not strong enough to squash my hatred--they've wronged us all so much...my hatred is so heavy that it could crush me. Touch my heart, Lord, and show me how to forgive."

Through steadfast prayer and faith in God, Immaculée achieved the impossible--she forgave her family's killers.

Immaculée made a powerful choice:  She chose love. Though the atrocities she suffered supplied every justification to hate, she embraced love. She fought the venomous power of hate. Armed with love, she escaped imminent death and was left to tell the world her empowering story.

Dr. Wayne Dyer's brilliantly sums up the beauty of her story in the book's foreword:
"Despite the hideous display of humans' inhumanity to each other that was taking place only a decade or so ago in the country of Rwanda, this is truly a love story in the purest sense of the word--a story of the triumph of the human spirit, a story of one woman's profound faith and determination to survive (against literally impossible odds) in order to tell her tale and to be an agent for ushering in a new spiritual consciousness, and a story of a love for God that was so strong that hatred and revenge were forced to dissolve in its presence."


That is the power of Love.

Immaculée's story changed my life as a profound realization came to me. If Immaculée chose love in the midst of a holocaust, then I can easily reject hate in my life. When others spew hate, it is easy to respond with equal venom. My first reaction to hate is usually anger, but if I really think about it, I pity the malevolent person. They must live miserable, lonely lives to subject others to their hatred. Or maybe they loathe themselves, so they project their self-hatred onto others. Hating the haters serves to breed more hate. So instead, I will protest with love. I'll pray for them. It may not always be easy, but with Immaculée's shining example to follow, I know I can choose love in any situation.

I sincerely recommend her empowering book. If you are moved and inspired by Immaculée's strength and vision, you can support the Left to Tell Charitable Fund by purchasing her book and/or wristbands. Or you can make a tax-deductible donation. The fund helps the children of Africa build better lives.

Love Beats Hate

Please visit the Love Beats Hate Facebook page to find links to the other participating blogs or Facebook pages. You can also share the love on twitter using the #lovebeatshate hashtag.

Thank you for visiting!

Let love rule.

LIFESTYLE FOCUS

I am making some healthy lifestyle changes. As I promised myself in my latest food journal entry, I am restarting my wheat- and gluten-free nutrition plan today. If you are interested in my progress, be sure to check my food journal page for updates. As part of my plan, I am giving up coffee and pop. This is an enormous hurdle for me but I am ready to give it a serious try.

I also need to implement an exercise plan into my daily life. I recently purchased a DVD called T'ai Chi Daily Practice with David-Dorian Ross & Daisy Lee Garripoll. I tried the routine for the first time this morning. I felt like a buffoon trying to follow along. It is difficult for me to learn new leg and arm movements simultaneously. However, I am choosing to be patient and kind to myself. After all, it would be challenging for most beginners. I have been intrigued with T'ai Chi for a long time, so I am excited to learn more about it. Though I felt somewhat awkward and uncoordinated, I also felt calm and focused.

This year I have increased my commitment to my writing life and I am seeing positive results. However, I am anchored to my chair or couch for several hours a day. My mind goes on exciting adventures, but my body remains grounded. I have horrendous posture and tend to hunch over my notebook or computer. My lower back suffers the consequences. I think the T'ai Chi practice will be a perfect solution to improve my posture and get active. Then I can focus on my writing with a clear, calm head.

hunch-a-bunch

I need to do everything in my power to minimize my Endometriosis symptoms. I refuse to believe I am completely helpless against my disease.

I will continue to blog about the challenges and triumphs of my plan. What healthy lifestyle changes have been successful for you?

IT'S A MAJOR AWARD

Fun news! My lovely friendo Jenny at Jendometriosis awarded me the "I Love this Blog Award." Thank you Jenny! I am so honored and excited.

I am as giddy as the dad in A Christmas Story. "It's a major award!"

Here's how it works:

1. Thank and link back to the person who gave you the award

2. Share 7 things about yourself

3. Award up to 15 blogs that are deserving

4. Contact those bloggers and let them know about the award

Seven random things about me:

1. Everyone in my immediate family has a first name that starts with the letter J. (We did it before the Duggars & there are way less of us).

2. Euchre is my favorite game. (I have euchred my cousin's loaners TWICE. I work it into our conversations as often as possible).

3. If I'm in my car, you can bet I am singing. (Sometimes my pointer finger is flying around too). Music makes my soul shout.

4. I overuse exclamation points!!!!!!!!!!!!!!!

5. I constantly have lyrics running through my mind and can turn any moment into a song. (I particularly like to incorporate my dog into songs: Black dog singing in the dead of night; Tyson in the Sky with Diamonds; Tyson's just a dog in the world etc.).

6. I wish I could hang out with the Muppets and rock out with Electric Mayhem.

7. I read my son every word of every Harry Potter book. (And he listened and enjoyed every word!). We dressed up for the local Harry Potter festivals and waited in line at midnight to receive our copy of Harry Potter and the Deathly Hallows. It was an unforgettable moment of pure magic.

I would like to share the love with the following extraordinary bloggers. Drum roll please.

My "I Love this Blog Awards" go to:

Alanna my fave frogger of The Chipper Writer

Amanda over at The Patch

Caf from Rellacafa

Endochick from Endometriosis: the Silent Life Sentence

The lovely ladies from Bitter Orange and Brown

I would have also chosen Jeanne from Chronic Healing, but Jenny beat me too it. :) And I would have picked Jenny too. I love her blog.

Each of you are inspiring writers and I adore your witty, insightful and informative blogs. You rock!

Thanks again Jenny! You made my day. What a fun way to spread the blog love and support other bloggers.

TOXIC TRAVELS

My fellow Endo Sisters were invisible passengers on my recent trip. I thought of them often. I pondered over my story, just one of an estimated 89 million ongoing tales of pain, isolation, exhaustion and sorrow. How many of us have been forced to watch our lives speed by from the sidelines?

We aren't the only ones. My thoughts and concerns were not just with my Endo Sisters. The travel environment also brought Multiple Chemical Sensitivity patients to mind. (It is not uncommon for Endo sufferers to also be afflicted with MCS). While I do not suffer from this condition, exposure to strong chemicals can cause me to develop headaches and nausea. I have avoided the perfume counters at department stores for as long as I can remember.

I encountered several heavily-perfumed women at the airport. One woman's cloud of perfume enveloped an entire waiting area. The scent invaded my senses and lingered in my mouth, like I'd taken a gulp from her perfume bottle. My head began to pulse. My husband and I rushed to a different area and I prayed she would not be seated near us on the plane.

The restrooms had their own overpowering smell, an unpleasant combination of cleaning products, air fresheners and hand soap. Seemed the airport toxins were inescapable.

Though we were lucky enough not to be seated next to the crazy-perfume lady, many other passengers carried-on their own toxic smells. It remains a mystery to me--Are people really this oblivious? Do they not realize their powerful fragrance may be offensive to others? (Especially in the stagnant environment of an airplane!) Do they really need seven squirts to be able to smell their own perfume? How do their loved ones stand their over-the-top aroma?

These issues continued throughout the trip as I confronted similar problems at our hotels.

I realized, with much sadness, many people are unable to travel--grounded by the adverse effects of hazardous products. Even worse, some folks are confined to their homes because of these pollutants. It's not fair.

You don't have to suffer from MCS to be affected by the toxins in our environment. The truth is--we all encounter harmful substances every day in auto products, cleaning products, cosmetics, pesticides, pet care products, air fresheners...the list goes on and on. They are unhealthy for everyone.

If you'd like more information about MCS, I encourage you to visit my friendo Jeanne at her blog, Chronic Healing. You can read her letter to Oprah, written as part of a concerted effort to raise awareness about MCS. You can find her other posts about MCS here. The Canary Report is an excellent resource for MCS topics and links.

The trip really opened my eyes. I want to empower myself as a consumer and research more toxic-free options. Do you  have any tips? What are your favorite toxic-free products or manufacturers? What websites do you trust to deliver truthful information? I'd appreciate any comments or suggestions.

I HEART JOE

Coffee:  The recipient of my unrequited love.

I crave it every morning and adore the whole routine. I unzip the bag to inhale the scent of the beans and tilt it until the beans dance into the grinder. The obnoxious whirring ensues as the blades reduce the beans to tiny fragments. The aroma rises as I remove the lid and I take another slow whiff. I dump the fresh grinds into the filter and fill the back of the coffeemaker to the predetermined level. Like magic, the clear water morphs into chestnut-colored concoction that drips into the pot below. Anxiously, I wait for the trickles to cease. I fancy up the java with cream, the color swirls and changes again. I sweeten it with a squeeze from the honey belly and tap cinnamon onto the top. The first steamy sip slips down my throat. Aahhhh. Good morning.

Here's where the relationship gets tricky. I'm never hungry when I wake up. My belly does not appreciate coffee and gets especially irritated by its arrival when it's empty. I have suffered through too many cases of self-induced coffee-stomach to avoid the truth:  I shouldn't drink coffee. Yet I still do. I should avoid caffeine, but it's so hard to resist.

My ramblings sound like the mad thoughts of an addict. Dammit.

I pondered all of this as I enjoyed a homemade mocha. I melted Lindt truffles in milk to create a frothy mixture to add to my coffee. It was divine.

As I savored the last sip, I discovered this at the bottom of my mug.

Maybe coffee loves me after all.

SCENE FROM THE JETSONS

I admit it. The theme song from The Jetsons played in my head while my gynecologist first discussed robotic surgery.

Rosie the Surgeon?

Wait, what? How can a robot perform surgery? I shook the tune from my head and listened to my gynecologist explain the procedure. Suddenly, it clicked. The robot twists and moves with precision in ways a human simply cannot. The high-definition 3D camera sharpens the surgeon's vision with superb clarity. The robot isn't at the controls; the surgeon controls the robot. Genius.

I was "introduced" to da Vinci at the conference two weeks ago. I choked back the lump in my throat as I approached the machine. The anesthesia blocked any memory of the operating room, so it was like seeing the robot for the first time. The victorious robot, my hero.

The rep offered to conduct a simulation. I perched before the powerful machine. My fingers spun the controls, the robot copied my movement. I grasped a rubber band with the robot fingers and lifted it with ease. Success!

I imagined myself on the operating table--underneath the dexterous robotic hands--surrounded by a focused surgical team. Gratitude washed over me.

My robot encounter was an unexpected highlight of my trip. Nice to meet you, my robot friendo. Thanks for being awesome.

I suppose that makes me, "Jane, his wife!"

STANDING UP FOR ENDO

Last week, I had an incredible opportunity to stand up and tell my Endometriosis story. 

I was approached in December by Intuitive Surgical, the makers of the da Vinci robotic surgical equipment, to speak at their sales conference. With my permission, my doctor had shared the details of my severe case and successful robotic laparoscopy. Heather from Intuitive Surgical contacted me and explained their commitment to patients and women's health. Impressed with their mission, I agreed to speak to the 700 attendees.

The conference was scheduled for Florida in January, a delightful bonus of the trip. I grinned as I gazed out the window at the accumulated piles of snow. My husband and I planned our unexpected vacation. We'd travel to Florida on Wednesday, I'd speak on Friday and return home on Sunday evening.

As soon as the holiday rush passed, I focused on my speech. How would I fit my complicated story into the ten-minute alloted time frame? I fussed over each word and practiced in front of my family and friends. My aunt encouraged me to revisit the entire story. I recalled my three unsuccessful laparoscopies and their resulting heartbreak. I relived the agonizing pain and misery my Endo has caused over the last decade. My aunt helped me edit my speech until it popped. My story came alive on the page.

I awoke Wednesday morning to a world covered in white. Heavy flakes fell from the sky in a frenzied parade.

Despite the travel drama that ensued, we made it to Florida by Thursday morning. We arrived at the resort and met with my new friend Heather. I practiced on the stage of the enormous banquet room and prepared to deliver my speech.

Early Friday morning, I shared the brief synopsis of my Endo story with the colossal crowd of strangers--the mistreatment from my previous doctors, the years of searching for answers, the debilitating pain that ripped my life away.

I recalled to them the life-changing moment when my friend (and fellow Endo Sister) referred me to her doctor. I immediately scheduled an appointment. At my first visit, I explained the long, ugly details of my situation. He said I sounded like the perfect candidate for a da Vinci robotic laparoscopy. He was confident he could aggressively remove my endo and stop my pain.

My doctor and the da Vinci robot saved my life.

Surgery is not a cure and my battle with Endo will continue. But my surgery was a miracle. My doctor never could have achieved the amazing outcome without the precision of the da Vinci robot. He removed all of my Endo lesions and fibroids, freed my tangled organs including my bowel, bladder and kidney. He took out my cystic ovary and twisted fallopian tube, which was dangerously growing into my kidney. Attached and intertwined, my organs had been nearly indistinguishable from each other. He accomplished this feat without any damage to my organs. My prayers were answered.

I faced the crowd and expressed my gratitude for their work. I searched for years to find relief from my pain. My debilitating pain had tortured and nearly sucked the life from me. Meanwhile, I unknowingly lived five minutes from my doctor's office and ten minutes from the hospital with the da Vinci robot. I hope and pray my story will help other suffering women and illuminate the possibilities of da Vinci robot for Endometriosis patients in need of surgery.

The crowd rose to their feet in a wave of sincere support and gratitude. I averted my eyes to the floor. Then I looked up to capture this powerful moment in my memory--the sea of smiling faces, the roar of their applause, the recognition of my struggle and the hope for the future of Endometriosis sufferers.

I descended the stage stairs and savored the moment. I'll always remember the kindness and support that radiated from the captivated audience. Many people gathered to introduce themselves, shake my hand and thank me for sharing my inspiring story.

After the conference, my husband and I started our mellow vacation. We soaked up the sunshine and relaxed away the remainder of our trip. We heard Florida was the only state without snowfall that week. I couldn't believe our luck and thanked God for blessing me with this unbelievable opportunity.

The next morning, I opened my eyes and basked in the breathtaking view of the sun peeking over the ocean. A new beginning, a new chapter in my life had begun. The vast horizon represented the untold possibilities of the future--bright, glorious, promising.

I am still glowing from the cathartic experience. I have several ideas to support Endo patients and I'm working on a plan to enact them in my local community. I'll keep you updated on my progress. I believe in our collective power as Endo Sisters. We can stand together to demand better options and research for a cure. This is just the beginning.

Thanks to Heather and Intuitive Surgical for this amazing chance to spread the word about Endometriosis! I sincerely appreciate your work, kindness and hospitality. 

A SUNNIER VIEW

Hey Friendos,

I've been absent online for almost a week, so I wanted to say hello. I'm working on an exciting post that I can't wait to share. I'm going to remain mysterious for now, but I will give you the following clue:

view #1

view #2

I hope y'all had a nice week. I'll share the details of my week soon.

THE DECISION

I didn't have to wait long.  The unemployment decision arrived in the mail yesterday.

I visited my neighbors at their house in the afternoon.  Since we live on a private drive, our mailboxes are at the end of our little road.  When I left their house, I trudged through the snow to see if Saturday's mail had arrived.

Gentle snowflakes had fallen all morning.  A fresh blanket of snow covered the ground.  As I walked home, I mindlessly flipped through the contents of my mailbox.  To my surprise, a letter from unemployment lay in my hands.  A still calm surrounded me.  I took a deep breath, looked up to the sky & tore open the envelope.

I skimmed the first page, only interested in the decision.  It wasn't there, so I quickly shoved it behind the other pages & scanned the second page.  I didn't find the decision there either.  My heart raced.  I shuffled back to the first page & carefully read each word.  Nothing.  Ahhh!

Then I turned the first page over.  It was a double-sided letter!  (Duh).  Here's what I found:

"LAW:  An individual is not disqualified for benefits if the individual was discharged without just cause in connection with work.

REASONING:  The Courts, Commission, and Director, have consistently held that an individual who is unable to work due to a bona fide illness does not engage in misconduct, and is discharged without just cause in connection with work.  While the employer may have made the correct business decision for their ongoing operation, since the claimant was unable to return to work, and provided medical statements in support of her claims, she did not engage in any misconduct, which should have resulted in a denial of benefits.  Therefore, it is held that the claimant was discharged without just cause in connection with work.

DECISION:  The Director's Redetermination, issued September 03, 2010, is affirmed with respect to claimant's separation from (company name).  The claimant was discharged by (company name) without just cause in connection with work.  Claimant's application remains allowed."

I won the appeal!  Again!  I rushed back to my neighbors' house to share the terrific news.

I'd love to confidently state that this will be the end of their harassment.  However, they have twenty-one days to file a Request for Review.  According to the letter, "The request should set forth the reasons why the appellant disagrees with the Hearing Officer's decision."  Ughhh.

My gut tells me they are finally going to stop.  They know they can't prove I wasn't ill, & that's what they would have to do.  If they file their third appeal, I'll just have to speak the truth again.  How many times do they need to be told:  THEY TERMINATED ME WITHOUT JUST CAUSE.  I guess I'll find out soon.

Just like love, the truth prevails.

I can sum up the letter in one word

NOW WE WAIT

The unemployment hearing went well, as far as I could tell.  Their stated reason for the appeal was that my termination was just.  As the appellant, they had the burden of proof.  In other words, they had to prove they didn't fire a sick person recovering from surgery.  The unemployment representative was only interested in whether or not I was too ill to work at the time they claimed I "voluntarily abandoned" my position.  With the medical documentation from my physician, there is no question.  The damn company knows this, but they keep fighting it anyway.

The head of HR was the representative of the company.  He asked her if she had received the documentation from my doctor stating I was unable to work due to a bona fide illness.  She had to reply yes, because I have proof of it.  Knowing this was the only relevant fact in the case, she then made the most infuriating comment.  She stuttered, then stated they actually doubted my condition was a bona fide illness, since I had to push back my return date more than once.  It was the most insulting comment ever made about me.  I was livid, but kept my cool & allowed her to finish her (despicable) statement.  Then I explained my surgery cancellation & severity of my condition.

Hmm...so according to them, my condition isn't real because my surgery was canceled.  I can't find any logic in this accusation.  Can you?

She proceeded to spew lies, this time about my husband.  She claimed he told her I did not intend to ever return to work.  In reality, he called her to discuss alternatives to firing me, so I could return to work as soon as I was able.  The unemployment rep quickly shot this down.  Since she hadn't spoken to me directly, the conversation was irrelevant & inadmissible.  He questioned whether she had asked to speak to me during their conversation & she again tripped over her words, lied & said she believed she had.  He quickly stated it was unnecessary to speak to my husband as a witness, indicating her main piece of "evidence" was already determined to be bunk.  I explained I would have been able to return to work just nine days after they fired me, but I wasn't given the chance. (Zinger!)

When it was my opportunity to ask her questions, I contemplated asking her how she sleeps at night.  But since her lack of conscious was irrelevant to the case, I refrained & stated I didn't have any questions.  When it was her chance to ask me questions, she began to stammer out a snarky question, thought better of it, & said she had no questions.  He informed us he would review the case & a decision would be made as to whether I qualify for benefits.

I was so angry when I hung up the phone.  I expected the dishonesty, but I never thought I'd have to defend my debilitating illness as real.  I blurted out the details of the call to my husband.  He reassured me (several times) that I had done well.  It took some time for me to calm down & stop replaying the hearing in my head.  Then I consciously refused to let their lies upset me any further.  I met my family for a lovely lunch, vented & let it all out with a deep breath.

Now we just have to wait for the decision to arrive in the mail...

hoping to receive this stamp of approval

UNEMPLOYMENT APPEAL

It has been about three months since I received notification of my former employer's latest appeal of my unemployment.  I finally received the hearing date a couple weeks ago.  Tomorrow's the big day.  The appeal will be conducted over the phone.  I'm ready to fight.

I consulted an attorney & she assured me I will have no problem winning the appeal.  I'm still nervous though.  I can only imagine what they will say.  They have already been blatantly dishonest & it seems likely they will continue this vile behavior.

From what I can tell, this is their last chance to fight my unemployment benefits.  I cannot wait to finally end this chapter of my life & no longer be subjected to the harassment of this company.

The truth is on my side, so I should not fear.  The new year will bring a positive outcome to this negative situation & I will happily move on with my life.

I'm ready to put this crossroad in my rear view mirror

LUCKY GRAPES

My husband & I had a fun New Year's Eve with a few of our closest friends.  The host of the party was mi amiga from Catalonia, Spain.  She planned to teach us a Spanish New Year's custom.  I had never heard of it & I was excited to learn a new tradition.

my twelve grapes
 

When we arrived, she explained the custom of 12 grapes in 12 seconds.  For each of the last twelve seconds of the new year, a bell rings.  At each chime, you have to eat one grape.  Or more accurately, you put one grape in your mouth.  If you complete the task, you will have good luck all year; if you don't, you will have bad luck.  Since I wanted nothing to do with bad luck, I was game.

 

 look at all that luck

She prepared the bowls containing a dozen grapes for each of the guests.  As we gathered to watch the ball drop, she had her pan & spoon in hand.  She banged off the last twelve seconds of 2010 & I popped a grape in my mouth for each one.  This was harder than I had anticipated!

After the eleventh strike, my husband dropped his last grape.  I watched the fruit playfully bounce away from him.  He quickly dove on the floor & swatted it to the ground, throwing it into his mouth with no time to spare.  Cheeks protruded, I choked back a laugh.  I was secretly relieved; we were both determined to start the year with a little extra luck.

With so little time between gongs, there was no chance to chew.  As the clock struck twelve, I attempted to finish the mouthful of grapes.  Juice dribbled down my chin as I looked around & giggled at my silly friends and their grape-packed cheeks.  I chewed & chewed & chewed, wondering if I would have to spit some of them out.  But I didn't give up & after a few minutes, we had successfully eaten all of our grapes.  I planted a sticky-lipped kiss on my husband, a smooch to seal the good luck.

 it's hard to chew & laugh!

It was a lively start to the new year.  And I've already had a bit of good luck.  I think the grapes are working!  I hope you had a fun start to your year too.