Friday, October 17, 2008


I don't remember much of 2003 other than moving into our new home and starting some of the work that needed to be done to it. I think that we had the windows replaced in October that year and we also replaced almost all of the light fixtures. I know that as the year went on, I was getting sicker than I had been in a while.

I worked a couple of different jobs that year. When we first moved up to the Utica area I was working at a photo lab in Target. That was an interesting job. I had never done anything with developing photos or mixing chemicals before and that was what I had to do in this job. I loved it but when a better opportunity came along, I took it and left.

I went on to work for Sports Physical Therapy of NY in Rome, NY as a secretary. I also loved that job but the 30 minute travel to work and then home was one of the things that I could have done without. After not too long of being at that job, I got another offer at another physical therapy place. This job was also as a secretary but it was a lot closer to home and it was for more pay. I liked the job and it definitely kept me busy but I continued to get sicker while working there. Not that the job was making me sick, but my health because of the Cystic Fibrosis was deteriorating. I would even go into work when I was on IV medications because that was the way of life for me and the only way to keep a somewhat normal one and not be in the hospital for weeks on end. That's what most people do when they have CF.

Everything was getting worse and got much worse for me. I had been working at this place for about 5 months and had not had my 3 month review yet. I was so pissed the day that I came into work, on a Friday in March of 2004, and was told to come into a back room and was handed my last check and they told me that they were letting me go. I looked at them and was like 'what.' I had been sick a day or two prior with a lot of coughing and running fevers and came back to getting fired. Tell me that that doesn't look suspicious! I was told that they did my 3 month review and they thought that I was not up to where they wanted me to be. Okay, there were a few things that I found wrong here....#1) I was supposed to be there for my review and #2) Why did they do it on a day that I was out sick? They proceeded to tell me that I was not doing what I was hired for, that the billing office wasn't getting codes for billing on time, and that they needed to be able to pull me in 10 different directions at once and they felt that they couldn't do that with me. Here are my problems with that.....I was doing way more than what I was hired for. The longer that I worked for this immoral lady, the more work that she gave me every day to do. She even wanted me to go in a put ice packs or hot packs on her patients which you are not supposed to do without a license in physical or occupational therapy, which I did not have. The reason that things were not getting to billing on time was also the owner's fault. I would look over her codes that she was billing and if there was something wrong, I would have to send the paper back to her and tell her to bill under a different code. Well, this would take forever for her to do. I would have to tell her that I needed it and she would keep ignoring it. When I brought this up in my abrupt exit interview, I was told that I should have just kept hounding her until it was done. Was it my job to run the office and make sure that she did her job? No! I was not the office manager and I was not the owner. The lady pulling all of this crap was the owner and that day, I lost absolutely all respect for her. I think that she is a cold hearted woman and would never work for her again. And last, who in the world, sick or not, could be pulled in 10 different directions at once??? This lady was not right and if I was faced with the opportunity to tell her how I feel about her, I would.

Well, that same day that I was fired, I went down to a hiring agency (that I had used before) and I had a job somewhere else that same day. I started training at my new job that Monday and then a couple of days later I ended up in the hospital with Pneumonia. Well, I lost that job opportunity too. I think that I was in the hospital for about a week and then was released on IV antibiotics. Not too long after, I had another temporary job that went great. It lasted for about a month or two and then the job was finished. I then went on to babysit for a family with 4 kids and did that for a while. When I wasn't really needed there anymore, I babysat for another family who had a set of twin boys who were not a year old yet. It was nice babysitting them but my hands were full. One of the boys had cerebal paulsy and needed more help than the other. They were both so adorable and I absolutely loved them! It wasn't too long before I had to move on from babysitting them and get a job where I was making more money. I got another temporary job offer from the job agency and I started working at Centrex.

Centrex is a lab that does blood work, urine tests, drug tests, and sets up home draws for people who can't make it to the lab. I worked in the part setting up home visits. It really didn't take me long to get used to that job and get good at it too. It was only a temporary job though so I was still looking for a permanent job. I had applied for jobs at a bank and for a place called The House of the Good Shepherd. Not too long after I had applied at both, I had interviews for both. Both of the interviews went well and I had 2nd interviews for both. The day that I had the 2nd interview at the House of the Good Shepherd, I was offered the job. I thought about it and I accepted the job!! That same day that I accepted the job, I had had a rough time with a customer on the phone at Centrex. I was called back to Human Resources at Centrex and I thought that I was in trouble because of the phone call that I had taken where the guy was irate. I thought that I had handled the phone call well and stayed calm. Well, I had been called back to the office for a completely different reason. The person who was supposed to be moving into the position that I was filling in for decided not to take the position and I was offered the job. They wanted to hire me straight on instead of being temp. I told them that I couldn't take the job because I just took a job somewhere else and that if they had told me like the day before or earlier that day that they wanted me to stay, I probably would have.

If those two job offers were not enough, I got home and there was a message on my phone that the bank that I interviewed at also wanted to hire me. I went through most of the summer trying to find a job and got turned down left and right, and then all in one day I had three job offers!! It was crazy! But I had accepted the job at the House of the Good Shepherd and I started that job in August 2004. I was hired there as the Administrative Secretary and has many jobs to do under that title. I was a little nervous at first because I shared an office with my supervisor but she was cool and I got really used to it. I had not told anyone in the interviews that I had, that I had Cystic Fibrosis. I didn't want to be turned down for a job because I had CF because I knew that I was a hard worker no matter what. But, not too long after I was hired, I started to get really sick and needed to go on IV antibiotics and had to tell them that I had CF. They all took it really well! I did have to explain to some people what CF was but I don't mind doing that.

In November of that year, I ended up in the hospital for a really bad infection that would not go away. I think that it was Thanksgiving day that I was admitted for coughing up blood (hemoptysis) and the infection. I was taken out of the ER and put into isolation because the doctors thought that I had TB. At that time, I did not know that CF symptoms could immitate having TB. My CF doctor (Dr. Sexton) was so livid that I was put in isolation. When a CT scan was done of my lungs, Dr. Sexton told me that I had holes in my lungs and the upper right lobe as non-functional. My liver disease was also progressing. Dr. Sexton brought up the conversation of lung and liver transplants not being too far off and that we needed to find a transplant (Tx) clinic and get the evaluations started. That was the hardest news to hear but I knew what I had to do to keep myself here.

We were going to go with Massachusetts General Hospital (MGH) but when we were getting things set up to go there we found out that the insurance that I had through my work would not cover that hospital so we had to find a different one. And that's when the search started and we found Cleveland Clinic. The evaluations didn't start until much later though.

In the end of 2004, I had a follow-up appointment with Dr. Sexton and I talked to him about a cruise that I was going on in January 2005 and he told me that it was probably not the best idea to go since I was getting so sick. I think that it was an intern that told him that if I was going to be going through all this Tx stuff and continue to get sick, why not let me have one last vacation. Dr. Sexton made me promise that if anything were to go wrong on the cruise, I would be life flighted off of the cruise and taken to the nearest hospital (which would be in Florida) and once I was stabilized there, I would go to my clinic in Syracuse. I promised and then it was decided that I would go on probably my last vacation before things deteriorated even more. That was great news and that was the end of a rough year.