My Cystic Fibrosis Journey: 1992

New Priorities

One month before my 21st birthday, instead of looking forward to being able to legally drink, I focused on finances, tried to find healthcare and medication without insurance, and hoped to someday be able to return to college. Job in hand, making a decent $8.00 an hour, I could also finally afford the final payment on my bridesmaid’s dress for my sister’s wedding at the end of the month.

Get a Job

I had never held a 9-5 job before, and life as a Service Manager at the county’s most successful privately owned appliance store was very different from school.

At least in school, you changed classes every hour, saw different people, and literally had a few moments to yourself. There was no arriving at 9:01, and no leaving until 5:00. The time clock we punched made sure of that.

My job was perhaps the busiest job I could imagine. There was a line of people who had vacated the job in short time, because they couldn’t handle the intensity of the work. The store had thousands and thousands of clients from the past 20 years. Each client had a file card that contained a list of every purchase and service call ever done on their appliances. You can imagine how thick those files got over decades of patronage.

I sat at an office area in the back of the store with the Office Manager/Accountant and the Credit/Payment Manager. I manned five phone lines – 4 customer lines and one for the servicemen to call and get their service calls.I  Developed a system for making and keeping track of service calls. I wrote a manual of everything I did, from the activities that took up most of my time, to the smaller detailed responsibilities. I developed sample scripts for anyone answering the phone should I be absent for any reason. I kept a list of morning and evening tasks like turning on /off the phone lines, which records needing copying and filing such as service call notices and item exchanges, distributing them to  various people in the company, and creating more efficient method of updating and filing thousands of service cards a month.

The insane workload and level of responsibility was a thrill to me. I caught on quickly and nobody in the store – management, sales, administration, warehouse, service department – could believe I lasted longer than the previous four or five of the last few months. I made a promise to maintaining accurate records, friends and prompt customer service, and vowing that I would be someone that they could count on. Even thought we really didn’t get breaks or a “lunch hour” unless we wanted to stay longer that day, we made it work. We usually worked through lunch = those phones never stopped ringing.

I was pretty lucky – I made a good salary for someone without a college degree and a short work history. However, I possessed excellent t management skills from all of my extra-curricular activities, found creative solutions to broken processes, knew when to lead and when to follow, could effectively diffuse customer conflict, and save time and money wherever and whenever possible.

Contribute to My Family

I was an adult, and therefore, I let me mom know that I would try to contribute in every way possible. Thanks to a steady paycheck, I was able to pay “rent”  to my mother while still living at home; bought my own food and gas, did laundry, tried to keep things clean, and basically took care of all my needs on my own.

My sister’s wedding was also coming up really quickly. Without having had a stable job and having to move suddenly, it was a struggle to be able to give her everything she deserved from me as a sister and a bridesmaid – a bachelorette party, a bridal shower, wearing the bridesmaid dresses she had picked out, and being there in every way possible to help her on her big day.

Take Care of Myself

Physical Health

The one area I struggled in was taking care of my health. For several years I had no health insurance, for doctor visits or medication. I had to leave my CF Clinic and find local doctors that would take me on a sliding scale. I found a Pulmonologist and a GastroEnterologist, to help me with the biggest and most basic problems. Because I still lived at home, I was not eligible for certain social programs, so I came up with a patchwork plan to get me through for the meantime.Some doctors were able to give me samples of medications, and they out

While at work, I worried every time  I needed to use the bathroom, which on certain days, was rather frequent. There was also only one bathroom in the entire store, and you had to pass everyone to get to it. It was difficult enough to manage my bathroom issues at home or on my own, but in front of coworkers, customers, and with monitored “breaks”, I felt like I had a thousand pairs of eyes on me.

The other problem was that when I got sick, I had to make sure that someone could cover the phones and the rest of my work. It was such a huge process getting others to take over all of the things I did on a daily basis that I tried to avoid staying out unless really necessary. Plus, I only got a few “sick days” a year, and I could have easily blown through them in the first 2 months. These fears were the impetus to put together a handbook for anyone that sat in this chair, whether because I was out sick, or because some day, I left the job to pursue my education.

Mental Health

I had started seeing a counselor while in college, and I found it extremely helpful to both have someone to “vent” to, as well as have someone listen and help me manage my ongoing issues and work through major life events that might have scarred me emotionally or things that I found difficult to muddle through, versus doing it all on my own. However, without health insurance, I had no way to pay to see someone. It was difficult.

Social Life

I kept in touch with a core group of high school friends, but they each one of them went to college in different states. I still had the long-term boyfriend relationship from school, but our lives were going in different directions . He was still in school and also working, while I was in a 9-5 job 45 miles away.

I celebrated my 21st birthday – which once again fell on Thanksgiving Day – the night beforehand, although nobody would serve me because the clock hadn’t turned midnight yet. Since Thanksgiving was always a big holiday, all of the bars closed early, and I didn’t get my first official “21st Birthday Drink”. It was fine, because it really is just a turn of the calendar, and I was really no different on that day versus the day before, nor the next day. The only change was that I had to get a new driver’s license.

Set Goals

After six months, I earned a raise and finally qualified for health insurance.

While working full-time, I kept my dream of going back to school in the back of my head. I had a lot of medical debt to settle, as well as some education-related debts, before I could get ready to apply to school again. I  found an organization funded by the city, that helps people with disabilities get build the skills , experience and earn an education,  so that when finished, they would be a functioning, contributing  member of society.

Another year of change behind me, I resolved that the next big changes in my life would not happen to me, but because I made them happen.


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