Monday, January 31, 2011

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.


Saturday, January 29, 2011

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.


Thursday, January 27, 2011

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!"


Saturday, January 22, 2011

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. 


Monday, January 17, 2011

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.


Sunday, January 9, 2011

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


Tuesday, January 4, 2011

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. 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


Monday, January 3, 2011

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


Sunday, January 2, 2011

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.