My Cystic Fibrosis Journey: 2007

Me, Myself, and I

Whether negative or positive, change can be tough, and 2007 was full of changes.

My Doctors

After the move back to my home state, it took a while to find new doctors, especially because I had so many body parts that demanded specialized care. Settling into new CF care was the most complex, not only from physical and logistical standpoints, but an emotional one as well. I had spent nine years with my previous CF and Primary Care doctors, as well as specialists in GastroEnterology, Urology, Gynaecology, Psychiatry, Orthopedic, Cardiology, with a Primary Care doctor to tie it all together. I spent nearly ten years with many of my doctors, so they really knew my history, my personality, my lifestyle, what worked and what didn’t work. Now, I had to start over. Arranging transfer of my medical records was one thing, educating my new doctors and learning to trust them were more challenging. I also had to get used to a new hospital setting. My previous hospital was much smaller than the now city-wide medical campus I had joined. The inpatient experience was very different from this one – inevitable when there’s a much more detailed hierarchy of caregivers and a patient population five times as large.

My Body

Right before we moved, I had once again developed a new, upper-right-sided abdominal pain. My primary care doctor ordered an ultrasound that showed I had several kidney stones on either side and an ovarian cyst on the left side, but none of those issues would cause pain in that location. I spent six days in the hospital while a gaggle of different specialists tried to diagnose me. It wasn’t my kidneys, my ovaries, my liver, or muscle injury, but the doctors repeated just about every test anyway, eliminating existing conditions as the root cause, and ruling out any other possible “new” problems.

One of the GI doctors thought I might have a problem with the connecting valves between the Pancreas and Liver and between the Gallbladder and Pancreas. I had a procedure called ERCP to test for it and cut the valve if I had problems with internal pressure (Sphincter of Oddi Dysfunction), which I did, and the surgeon snipped the valve to release the pressure. However, it didn’t relieve any of the pain as the doctor had hoped. In fact, nothing they tried helped at all. He gave me a diagnosis of Pancreatitis, and there was nothing else they could do but treat the pain and nausea.

However, I was convinced that at some point, we’d either find an answer or the body part responsible would somehow disintegrate or cease to mis-function. Having a little bit of hope helped me not fall apart. The symptoms were intrusive and debilitating, but I had to believe that someday, they’d disappear.

My Mind

I had continued my intense mental health work through the New Year. I acquired more effective coping mechanisms, found medications that better suited both my depression and anxiety, and learned to spot episodes of distress earlier. One of the long-term goals of my treatment was to find happiness in life. I had lost interest in hobbies, and I didn’t find satisfaction in anything I did. Ever since I had left the working world, I struggled to figure out just who I was, who I wanted to become, and how I was going to get there…until I stumbled back into something that I had given up decades earlier.

My Passion

I found myself interested in acting, which for a long part of my life, I thought would be my future. I researched acting classes and found one only 20 miles away. I took the first class, and was hooked. The spark re-ignited. I began feeling creative, productive, and enjoying myself. I reveled in learning monologues and working on scenes with fellow actors in my classes. We rehearsed and filmed the scenes we worked on the previous week, and replayed them for everyone to critique.

My 2007 acting headshot. Photo by Julia Gerace.

My 2007 acting headshot. Photo by Julia Gerace.

We studied acting theory, established ourselves in the local entertainment network, and learned about the industry in general. I started auditioning and finding roles. I had my head shots taken. I was back in the game, and it was wonderful.

My Social Life

The year 2007 was a great year for to see family and friends – such a positive change from so many years of being sick and feeling isolated.

  • We got to see Ken’s family in Arkansas and meet his sister’s third baby – another girl!!
Ken's sister and three daughters with me, getting ready to watch an Arkansas Razorback baseball game!

Ken’s sister and three daughters with me, getting ready to watch an Arkansas Razorback baseball game!

  • My dad’s family from Italy visited, some relatives I hadn’t seen in over 20 years, others who I had just met for the first time.
Ciao!

Ciao!

  • One of my “little” cousins got married.
  • We got tickets to see the Boston Red Sox in the Playoffs, at Fenway Park.

    Tickets! Tickets! We've got tickets!

    Tickets! Tickets! We’ve got tickets!

  • One of my sisters bought a company and reached her dream of becoming a CEO.
  • We spent a week with my sister at the beach, and it really helped take away some of the stress. The salty beach air, the gentle, warm ocean waves, the soothing sun, and the bonding with my sister and her family was the perfect prescription for a rough year.
    Me and our nephew.

    Me and our nephew.

    The house was one block from the shore. We rode our bikes everywhere – to the beach, to the coffee shop, and along the trail to the next town over. We took long walks and imagined living in one of the giant homes along the water. We still hope someday to do that. You never know!

My Heart

One spring night, Ken was visiting my brother at the restaurant where he had worked at the time. Later that evening, Ken called me and asked me a really odd question:

“Do you want another baby?”

A baby? A baby kitty? O.M.G., yes!!! Apparently, a cat was living under the deck of the restaurant and living off the scraps of food the employees fed him. While Ken sat at a table on the deck, the cat trotted up to him and started having a kitty conversation. The cat then jumped up on the table and suddenly, everyone around them began paying attention to it. Ken felt something – the cat had picked him – and he was not going to let this sweet, amazing kitty get away.

Our new kitty, Milo!

Our new kitty, Milo!

After that phone call, Ken put the cat in the car and drove home. When they pulled into the driveway, Ken said “get your baby” and I reached under the seat and picked him up. I held him close and carried him into the house and the rest, as they say, is history. We named him Milo, and he quickly became Ken’s little buddy.

Snuggly kitties!

Snuggly kitties!

It took our resident kitty Mackenzie a while to warm up to him, but every so often, we’d find the two of them snoozing together.

Keeping a Balanced Perspective

The many changes endured during 2007 helped me realize something that although I couldn’t necessarily control a lot about life, but I could control how I looked at it. Living proactively, versus reactively, led to more happiness and quicker mental recovery from challenges of all sorts. Even though my body continued to get sick, I didn’t have to be sick. It’s a perspective that I struggled to keep balanced – and still do to this day – but I think that I had figured out how to get back to “me” quicker and easier.

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