I while back at my first appointment with my PCP he said how amazed he was that I loved a fairly typical life and my new adolescent medicine doctors expressed similar sentiments when I first saw them. The thing is, I have fought to live my life the way I do. I have taken some risk in achieving the quality of life I have that some people or doctors do not want to take on such as a central line. However I constantly refuse to say no just because of chronic illness. For long time readers you may remember a while back I took up running, I mostly just did that because for the 1st time in years I was completely cleared for all physical activity.
When I started looking for a summer job I mostly looked for part time positions that could accommodate my doctor's appointments and even looked at office jobs that would be easier on me physically than the childcare ones I rather be at. However there was one job I applied to that is practically full time at 37.5 hours a week as a camp counselor at the local science museum. Perhaps not the best fit in terms of my medical issues but this was really the job I wanted. I applied, if I didn't I would be sure to regret it. I also applied else where.
After my interview I was told it would be at least 2 weeks before a decision would be made. In that time I had other interviews, for jobs that would probably be easier to handle with my medical issues, shorter days and more flexible hours. The week before I was supposed to hear back I received a call, I had gotten the job. All sort of thoughts ran through my head. I asked if I could call back the next day with my answer, telling myself I should really wait to hear back from the daycare I interviewed at that morning. However I soon realized what really held me back from saying yes was my concerns about making it work with all my health stuff. So the same day I called back and accepted the position. All of this took place in the time between my appointments at CHOP.
|Exploring the Museum At Night|
The other major issue I had was telling my boss about my medical issues. I legal do not have to disclose anything but I knew I would be less stressed out and more likely to stay if I felt comfortable running IV fluids and tube feeds at work. This was the first time I had faced some of these issues since I have pretty much had most of my jobs that I do during the school year pre-feeding tube. Going in to all my interviews I covered everything up. While I am legally protected against discrimination do to medical issues if I do not get offered a job there is a million other excuses that can be used but once I have a job it is a lot harder to be fired sue to medical issues. During training I informed my boss about my port and feeding tube and she was very chill about it and said I could use her office if I need to connect or disconnect at work. Overall everything seems to be working out really well and I officially start Monday and could not be more excited!