My Cystic Fibrosis Journey: 1997-2001

I’ve combined these years because although a lot happened, they are part of a distinct time in my life.

My First Real Job

I began a new job in Massachusetts at the end of May, 1997. Ken and I moved up to the Boston area, and we settled down into a new life.

My job in advertising had a huge learning curve. We designed and submitted Help Wanted ads into newspapers, magazines, and journals. Our office, a brand-new off-shoot of a larger office, handled smaller clients on a more intimate level. The more I got into the job, the less writing I realized that I was going to do, but I excelled in my position. We learned about the industry, made publication recommendations, and created each advertisement based on each publication’s size standards. We had to know a lot of information off the top of our heads so that we made effective recommendations and did things right the first time.

Thursday was our biggest day of the week, often not ending until nearly 10pm. Most of the publications in which our clients advertised had Thursday deadlines for the big Sunday Help Wanted section. I handled over a hundred ads per week, varying in size from a few lines to full-page advertisements with dozens of positions and graphics. Mistakes could cost us dearly – one full-page ad in the Boston Globe cost around $60,000.

I began the job on a part-time basis but within months, I had full-time obligations. My boss was very understanding about my CF, and allowed me a M-TH schedule. I made up the hours by coming in early and staying later most days. In addition to doing my work well and accurately, I was quick, despite handling a heavy volume. I also became the go-to girl for any writing needs. It was great that people trusted and counted on me to help them write their ads, even though sometimes it was just a sentence. In some ads, though, I had to write dozens of job descriptions, and blurbs about the company to try to sell the client to potential employees. This was during the Tech Boom and everyone was hiring.

TMP - Holliston Office at Christmas.

TMP – Holliston Office at Christmas. Me, Vicky, Bridget, Kim, Jen and Navyn.

Our office was small, but we were very close. We had taken two “girls” weekends together, one to Nantucket and another to Martha’s Vineyard, saw Blue Man Group and Phantom of the Opera in Boston together.

Going to the Chapel

While living working in Massachusetts, Ken and I put the finishing touches on our wedding plans back in Connecticut.

Growing up, I used to cry to my mother. I was scared that nobody could handle my CF, and that nobody would even want to handle it. Yes, I had a few serious boyfriends between 16 and 24, but I never expected that I would someday be somebody’s wife.

My southern gentleman proved me wrong, and on October 18, 1997, Ken and I sealed our vows with a kiss, in front of God and everyone we loved.

My Prince Charming!

My Prince Charming!

The day started out drizzly, but by the 2PM ceremony, the sun came out and reflected on the spectacular fall foliage. I remember walking into our evening reception, looking over the room of over 100 guests, and saying to Ken that I could not believe that all of these people were here – for us. What a feeling!

Like a Rolling Stone

It seems that my health divides into two paths: Chronic issues and Crises. And sometimes, a certain type of  Crisis actually become Chronic.

One evening in 1998, I had gone into the bathroom to pee and I had a sudden burst of pain so powerful that my body curled up and I fell off the toilet. It sounds funny, but as I went to the floor, I grabbed the door handle, opened the door, and landed halfway into the hallway. Ken took me to the Emergency Room and I showed signs of passing a kidney stone. I had a lot of “sludge” – smaller, gravel-like pieces of the stone, blood in my urine, and swelling in the ureter. The doctor inserted a stent into my ureter so that the swelling didn’t prevent me from passing urine. Thankfully, it only stayed in a week. Stents are pretty uncomfortable, because they extend all the way from the opening of the kidney to the bladder, causing contractions around the “hooks”.

The type of stones I grow are made of Calcium Oxalate. Studies have shown that CF patients with Pancreatic Insufficiency are at a higher risk of these type of stones due to inability to metabolize Oxalate – an organic acid found in most living things. The undigested oxalate bonds with calcium molecules and form stones in the kidneys.

Later that year, I also had to have a gynecological surgery. It was done on an outpatient level and my recovery was uneventful, other than sealing my fate as never being able to have children. Because it’s a sensitive topic, I won’t go into any more detail right now.

There’s Change Afoot

In early 1999, my office moved to a much larger location, in the building complex where our online division, Monster.com, now lived. The office also did some restructuring of personnel, and I moved to the Creative Department as a full-time Copywriter.

I spent almost a year exclusively writing, but before the calendar turned again, the office restructured a second time, and I would be out of a job soon.

Over the month of November, 1999, I applied for jobs all over the place. One company, who supplied original content for websites, offered me a job within the hour after my interview. I tried to negotiate a flexible schedule, with one day working at home due to my CF, but they refused and rescinded the offer. What made it crazy was that each writer did their own work, based on assignments from the manager. Everyone sat at their own desks, and there was one weekly meeting. It made no sense to refuse some flexibility. Unfortunately, the company had less than 50 employees, and therefore were not held to the federally-passed Americans with Disabilities Act.

Once again, I was discriminated against because of my health.

Faith —> Hope —> Joy

Feeling pretty hopeless, I heard about some openings in our online division, Monster.com. It was a new department – Product Development – and they needed someone who knew a lot about the job market and the site itself. In the Recruitment Advertising Division, we cross-posted and up-sold a lot of paper ads onto Monster.com. I knew the site very well as both an employer and a job seeker, because I found my first job on Monster.com, and at the time, had been using the site to find a job.

I interviewed the following week, and was thrilled when offered the job. I joined a new, dynamic team whose responsibility was to take feedback from customers (employers), users (employees), and every department in the company, and turn it into better features for the website. I loved my job. I loved the company. I loved the crazy, purple and green-themed space. It was exciting working for a popular company, a place where we held meetings over a foose ball table or seated at couches with the free coffee and snack bar.

Sitting in the mouth of Trump, one of the Monster.com Characters.

Sitting in the mouth of Trump, one of the Monster.com Characters.

I was so enamored with the company. Everyone in my department felt so lucky to have the jobs we held, with so many opportunities and experiences you’d never get in a typical corporation. As the saying goes, we certainly “drank the Kool-aid.”

In addition to loving my job and receiving both a 20% raise and a 20% bonus, most other things were going well.

Health

I enjoyed two years without a single hospitalization, ER visit, or new diagnosis.

Family

My first nephew and Godson born in March, 1999, and my second nephew born in May, 2000.

E and J

E and J

My family visit to an Apple Orchard with my Niece and Nephews.

Sisters and "the kids"

Sisters and “the kids”

Ken and I, Enjoying Life

We spent a few days at a Bed and Breakfast in Chatham, MA (Cape Cod).

The rocky shores of Cape Cod.

The rocky shores of Cape Cod.

Ken and I went on a Whale Watch off the waters of Boston Harbor.

Beautiful Boston Harbor at sunset, after a whale watch.

Beautiful Boston Harbor at sunset, after a whale watch.

Friends

Ringing in 2000 in a swanky club in Downtown Boston.

Taking a Girls’ weekend to my friend and coworker’s family beach house.

The Bubble Pops

We’d never appreciate the good things in life if we didn’t know the pain and sorrow of the bad things. Without darkness, we would never know the light as we do.

In the early 2000s, the Dot-Com Bubble – the term given to the unprecedented and over zealous growth of new companies and expansion in the tech industry – burst. Companies were laying off left and right, and my own company began one of many restructuring events. My department, which at the largest had 75 employees, kept dwindling in numbers. They shifted us around every few months, giving us different job titles, supervisors, and sometimes, different projects.

During 2001, my CF and other health issues became more and more evident and intrusive. I was getting nervous, because I had been getting sick more often and although my boss allowed me to work part-time from home or my hospital room, I worried that eventually, they would learn to manage my projects without me.

My “good health bubble” also popped in 2001.

  • I had another kidney stone, which required another stent in my ureter. However, this one stayed in for a month, until the kidney stone was able to pass on its own. The pain and discomfort from the stent was almost as bad as the pain from the stone. I was miserable!
  • A few days after September 11, I ended up in the hospital for a ruptured Ovarian Cyst, causing severe pain and infection that had to be treated in IV antibiotics. My CF doctors thought that since I was getting IV treatment, they might as well give me a few days of my usual IV antibiotics to try to kick down the level of infection that had been popping up every few weeks over the previous several months.
  • Those chronic infections were causing me to have more frequent and more severe coughing fits that began to aggravate my co-workers. I was having problems getting from meeting to meeting, which were sometimes separated by a 10-minute walk from one side of the complex to another. Ongoing stomach problems and a “new” pattern of abdominal pain sent me to the  bathroom several times a day.
  • My doctor diagnosed me with CF-related Diabetes, which devastated me. CFRD is not Type 1 or Type 2, but something in between, and therefore is managed a bit differently.

I didn’t know how bad things were going to get, but I trudged on until my body stopped me in my tracks.

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