Part Six: My sister's death

I brought my sister home to my house because I wanted to be the one who cared for her and because I cared. At first, she was still feeling welel enough to go to the store or putter around the house. She required daily wound care and her insurance sent a nurse to the house three times a week.  The rest of the time, we were on our own.

Unfortunately, I had to go back to work.  my fibromyalgia pain was more intense than ever.  My mind was continually on my sister.  Her pain was increasing.  She was unable to keep any food down for more than half an hour.

Her friends from Dallas and around the state were driving for hours to come here to visit with her. Some stayed for a few days, others a few hours. My husband saw to her basic needs - get me this - get me that - while I was away.

 After, about three weeks of this, I went to my boss and told her, "what if she dies while I am teaching people to prperly use their daily planers or some other mundane thing?  How will i feel about that?"  So, I took a second family leave.

It is important here to tell you that my company considered these leaves as one continuous period of time off. They used my sick time and vacation time to pay me.  They did not consider a sister as 'family' and therefore, family leave was actually, technically not offered. This is important because later it effected my actual disability leave.

Rachael's condition worsened and she no longer had any output into the colonoscopy bag and vomited up bile every hour or so.  We called hospice. finally, we had found someone who knew what both she and I were going through! They provided a wheelchair, a hospital bed, and stronger, more effective pain control.

One day, my sister woke from a two day sleep to say, “I love you, I love you, I love you, I love you."  Four laborious times, she repeated the words.  Then, she went back to sleep.  She never woke up again.  62 days from her date of diagnosis, she died.

Part Four:Stress exacerbates FMS

In July of 2003, I received a phone call early in the morning from my sister. She was scheduled for a routine exploratory surgery to determine the cause of stomach pain from which she had been suffering for about 4 months.  When I hung up, wishing her well, I began to pray.  I was overwhelmed with the sense that I needed to be there when she woke up from the surgery. I needed to be with her when she heard the outcome.  It was 7:00 am.  I called my boss and left am message on her answering machine that I was making an emergency trip to Dallas to attend to my sister.  I hastened to pack, jumped in my car, and drove to Dallas arriving just as the doctor finished his surgery.  

He came to the waiting room and inquired if Rachael Gray's family was there. I stepped forward to hear the news.  Rachael had stage 4 colon cancer.  He gave her anywhere from a week to a year to live.

  

Rachael and I looked very much alike. We were often mistaken for twins even though there was six years difference in our ages with her being the eldest.  We were close as twins.  We talked on the phone every day.  We shared everything.  She was unmarried and worked as an English teacher for the Plano ISD.  

She was still in recovery when her doctor showed me the pictures that he had taken during the endoscopic surgery.  Most of the pictures resembled reddish flesh and organs that looked as if a crazed painter had splattered buckets and buckets of white paint all over her.  The doctor explained that the white was cancer.  There was more white than anything.  It was terrifying.

When she woke, we (the doctor and I) explained that he had found cancer and that he would have to do another surgery, not endoscopic this time, to see if he could remove the masses.  This required a clean out such as they do for a colonoscopy.  She drank two gallons of that foul liquid over a 24 hour period.  Nothing happened.  She had no bowel activity.  After two days, he went ahead and took her into surgery anyway.

Several hours later, he came to me in the waiting room.  He said that he was unable to remove any of it.  It was like foam and disintegrated and spread when he tried to remove it.  It was wrapped around the main arteries to her legs and she would bleed to death on the table if he tried to cut it away.  He said her situation was bleak. The cancer was way too far advanced to treat.  He shortened his prognosis to a week to two months.  

Then he did something unusual for a doctor.  He prayed with me.  Afterward he sat with me for a long time while I cried and tried to digest the information he had given me.  

"Do we tell her", he asked.

"Yes", I replied, "she would want us to be truthful and give her the facts."

She didn't react well to the anesthesia.  It gave her nightmares and hallucinations.  She had to be tied down. Once when they hadn't restrained her, she found the scissors a negligent nurse who had dressed her surgical wound had left on her nightstand. She tried to attack the night nurse and escape.  They disarmed her, gave her a sedative, and restrained her again.  

That was the night I had left the hospital for the first time in a week to try and get some sleep at her house.  Just as I fell asleep, the phone rang.  

"You need to come down here and sit with her.  She is screaming in her sleep and the whole floor is disrupted. We are hoping you can calm her and stop the screaming,” the nurse told me on the phone.

So, I went back to the hospital.  No amount of shushing, crooning, singing, hand-holding, or anything else would stop her screaming.  Finally, I resorted to holding my hand loosely over her mouth to muffle the sound when she screamed.  Nightmares, she later told me, about being tortured by Hitler.

She remained in the hospital for nearly two weeks.  During that time, I was on my cell phone most of the day trying to pacify my main boss and run my office, rearrange schedules for classes, and break in a new mid level boss from the hospital.

Finally, I requested and received a family leave but still talked daily to the office because only I knew the ins and outs of the Leadership end of training. 

By that time, Rachael had been released but required constant care.  I brought her to my home in Alvin and began her full time care.  I learned how to clean and dress her surgical wound.  I learned to clean, replace and empty the colonoscopy bag they had attached during the second surgery.  I learned to ignore the horrible pain of my fibromyalgia.  It was getting progressively worse but I wasn't dying. My dear sister was.

Part Three: What I found out about FMS in the early days

At this point in time, in the year 2000, there was little on the internet that defined the condition.  My doctor tried a weight loss consultant. He cost me over $800.00 and gave me a hair sample test and blood test that only showed that I had a mild allergy to chicken eggs.  He then prescribed a regime of colonics and vitamins for an additional fee.  They had no effect.  Finally, I went back to the doctor and told him that his referral was to a quack medicine man who was hawking expense, untested, ineffective crap that served no one but himself and emptied m y pockets.  The doctor ran more blood tests, did a complete $900.00 physical and diagnosis, you got it, fibromyalgia.  No cure, no treatment.  Duh!

So, I began to list my symptoms and research the library for more information.  One book recommended guifisin (Mucinex) in large quanties would help.  It didn't.  One researcher suggested treating each symptom as a separate entity.  That is when I was on 12 or so different medicines:  Serazone for depression, Darvacet for pain, something else for migraines, muscle relaxers for muscle cramps, klonipin for restless leg syndrome, omeprozole for irritable bowel syndrome, Imodium for diarrhea, something for incontinence, and various others as well.  All these prescriptions and OTC were given to me by a medical doctor.  I rattled when I walked; I was so full of pills.  And yet, I still hurt, I was still exhausted, and my job had become a holy hell.

Some days, I would fall flat on my face in front of a class because I got up too fast and my muscles didn’t react as fast as I expected. They'd freeze and down I'd go.  I began to have trouble with coming up with the right word.  i know now that it was what is known as fibro fog. Then, I who am so proud of my vocabulary and communication skills, I thought I was just plain going nuts!

Just as I thought things couldn't get worse....they did.

Part Two: More background about the beginnings

I began to consider retiring at the beginning of 2003.  Everyday had become a lesson in torture as I showered and made myself presentable to meet a new day.  My manager told me I looked disheveled to which I took offense since I was unsure that she knew the meaning of the word and I hurt so badly getting ready that she was probably right.  I would plan my itinerary to arrive in the city where I was teaching or taking a class myself on the evening prior to the class. I would check in at the hotel and go straight to bed when I arrived knowing that unless I rested and controlled the physical stress, I would be unable to teach the next day.  I was doing my best to arrange my schedule so that I could cope. But then the company decided to tighten the purse strings and eliminated that option. They required us to fly the earliest flight on the morning of the class, rent a car, rush through rush hour traffic in an unfamiliar city, set up the class, and teach starting at 8:30 until 5:00. At lunch, I checked out of the hotel, bringing my bags back to the training site. After the class, we were required to clear up the room, wipe down all the tables, sharpen all the pencils and return them to the tables, pack, and go back to the airport. Rushing to return the rental car, ride the shuttle to the airport and catch the flight was excruciatingly painful.  Often times, when going to California or Washington, I had to transfer planes in Dallas.  Inevitably, the connecting flight was on the opposite side of the airport. Running with bags to catch my flight to Houston was exhausting. Dallas is notorious for delays, so even after all that rushing, sometimes I would find myself sitting for hours in those hard plastic chairs waiting for my flight which should have left already.  By the time I arrived in Houston, rode the shuttle to my parking garage, got in my car and drove 30 minutes home...well, let's just say the fibromyalgia pain was at its peak.

Even so, the next morning I was at my desk or at a training site by 7:30 trying to drag myself through another day. Being there by that time required I get up at 5:00 ( I need at least an hour before my muscles will allow me to shower and get ready they are so stiff and painful.) and leave my house by 6:45.  If my class was in northwest Houston, I had to get up at 3:30 or 4:00. Traffic is a bear in Houston.

I simply plodded through the pain and prayed for the weekends.

Part One:The beginning or first signs

I was diagnosed with Fibromyalgia (FMS)in 1998. Back then it was not considered a disease or even a syndrome. My doctor handed me a pamphlet about the pressure points and symptoms and told me there was no treatment. He said for me to make an appointment for 3 months later. Now why would I want to do that if there was no treatment and an office visit cost me over $100.00? That sure was one expensive pamphlet!

At that time, my main complaint was that my hands hurt all the time.  Just hanging there at the end of my arms and hurting.  Like a toothache that NEVER went away.  I had consulted a hand specialist who ruled out carpal tunnel, arthritis, and rheumatism Then he gave me this really painful needle-in-the-joints-test that revealed nothing as well. Finally, in desperation (and perhaps to milk more money out of me) he fashioned two wrist braces that held my wrists at a 45 degree angle and told me to wear them at night.  They provided no relief and made it nearly impossible to pee in the middle of the night!  I could not undress without taking them off.  Nearly didn't make it to the toilet after all that taking off of wrist braces while nearly asleep.
Then, for a while, my symptoms were not so severe.  Oh, I was diagnosed with irritable bowel syndrome and depression and went into therapy but no one else said FMS to me for a long while.
In 2002, I had a rollover accident when a woman ran a red light downtown and T-boned my Blazer.  I walked away with just a tiny scratch where some windshield glass cut me on my finger.  I took two days off work and resumed my normal life.
But normal life wasn't normal anymore.  The symptoms of hurting hands and the inability to get up off the floor once I was down there, and an aching right knee began to become intense.  So, I trouped myself back to a doctor. 

 FIBROMYALGIA! No treatment. At least now it was recognized by the AMA as a disease!
Work became a tremendous strain. I was responsible for the Leadership training for 350 managers and supervisors all around Houston, Dallas, San Antonio, and Austin. I took classes for myself in Washington State, Florida, Dallas, and California. I also had between 4 and 12 assistant manager trainees whose branches all over Houston had to visited at least once a month.  The travel, schlepping training materials,climbing stairs, airports, driving.... all that HURT!