I've always loved school and done well in school (I put myself through undergrad on a full academic scholarship complete with room and board) and known that teaching was what I wanted to do with my life. I think I was maybe 8 and playing school with my sister and telling her I had to be the teacher because I could really teach her something! I was lucky enough to be very healthy growing up, no "run ins" with CF issues greater than sinusitis and needing enzymes to eat until I was 18. This didn't keep me down long and I went off to college pursuing my career in Elementary Education (I know I chose to go with my passion even though you can't get much of a worse environment for germs). CF hadn't affected my life at all to even make me think of that as a consideration at the time and nobody, family, friends, or doctors advised me that I should do otherwise (I probably wouldn't have listened even if they did). I finished up my undergrad and went right to grad school and completed my masters in Elementary Math and Science. Then it was time to face that all difficult task of finding a teaching job with no experience in a state (PA at that time) with too many teachers and not enough jobs and if there are any educators reading this you will now how hard it can be to break into this field, especially in certain areas like elementary education. I ended up taking a job I didn't want teaching Kindergarten in a day care center. You can imagine the germs there! I lasted about seven months and was in the hospital and decided this was not the job for me, for more reasons than just health. I figured I needed to get myself into the public school system as we lived in a top notch school district. I got my foot in the door by taking a support staff position beneath my qualifications that opened up due to a maternity leave and finished out the last few months of the school year and proved myself. My dedication paid off and I got awarded a full time teaching position in one of the newest schools teaching first grade for the following year.
Now I need to explain the district I was in is a VERY demanding one that has driven many that don't have my health problems away as it wasn't for them. I am and always have been an extremely hard worker and I will admit sometimes even a perfectionist and I will push myself basically until I hit a complete breaking point and absolutely can't physically do anymore. Well in this district, you had to "beat out" the other 60 new teachers for the 28 contracts available making your position permanent and ensuring your employment for the next year. Let me tell you, I was out to get that contract and I was starting from behind as a first year teacher when most of the people have like 5 years of experience when they get into the district. Long story short, I ended up working without missing a single day from the first day of school until Christmas break even though my body definitely told me I needed a rest, at least one sick day, well before that. I put in 10-12 hour days M-F, usually took Saturday off and spent all day Sunday at home writing lesson plans, grading papers, and planning for the week ahead. Well you can guess how taking care of myself and doing everything I was supposed to with treatments became a second priority and often got skipped or cut short. By Christmas break instead of enjoy my well needed rest, I ended up in the hospital needing IVs and had to fight for them to let me out so I could get back to work when I used up all 10 of my sick days the days after Christmas break. Obviously I rushed back and within a month I caught the flu, which went to my lungs, and landed me right back in the hospital and ended up forcing me to take a six week short term disability leave. I came back and successfully finished out the school year.
Unfortunately, in November of that year I learned I didn't get a contract but that I was doing a great job and would certainly be staying for a second year (you get a couple years to earn a contract assuming performance is good and there are positions available). Knowing about the unpredictability of my disease and that it has progressed and gotten a lot worse in the last three years, I was devastated because I knew I may not get a job year two should I get sick later in the year as good attendance is an expectation of the profession, for the students' benefit. Well another long story short, the district had to cut a lot of positions due to decreased student enrollment at the end of the year and my class section got cut so I was out. I interviewed for a couple openings elsewhere in the district but was beat out by other candidates in my same situation (had worked there all year but didn't get a contract). I will never know if my sick time off had anything to do with that decision or not. I know legally it can't and they had plenty of other reasons to site, more experience, whatever, but I can't say I haven't wondered.
I do live by the motto that everything happens for a reason and how hard I worked and the germs I had exposed myself to basically made me restabilize over the summer at a much lower FV1 (29%) then I've ever had. It has forced me re-look at my life and think about a lot of things. As hard as it was, I did absolutely love my job as a teacher and it has been extremely hard, I'm still coping with it actually, accepting that my health won't let me continue doing what I have a passion for, spent five years of college working towards, and am good at. That being accepted at least to a point, I spent most of the summer trying to find a job like everyone's talking about that would at least fit my medical/health needs if not also allow me to make use of my intelligence and education in some way or another because even though my body's failing me now my brain is not and I feel "guilty" not putting those "brains" to work and using them in some way. If I'm honest with myself and the way I feel, and my numbers more than confirm it, doing anything is just so hard anymore and all my treatments take so much time to do right that there is no way I can probably keep up most normal jobs, let alone a job my experience and education qualify me for, especially one as a full time elementary teacher; hence, I've been toying with making the call to go on SSDI at this time or not and unfortunately because of other things hitting me right now (husband who I am now dependent on for benefits completely out of the blue saying he wants a divorce, on our first anniversary, but that's a whole other topic) it is looking like SSDI is the way for me to go to ensure that eventually down the road I will be able to get benefits through Medicaid and eventually Medicare that I just can't go without.
I guess I just feel like I never expected to get this sick this young (maybe an atypical outlook for a CFer) and accepting that I can't work anymore has been really hard. Hence, if there is anyone out there who knows how to find a job like everyone is talking about that accommodates the time demands of caring for CF, doesn't have higher than usual exposure to germs, and is accommodating to needed a lot of sick time, oh and has good benefits I won't lose by missing work and getting sick, PLEASE let me know. I would absolutely love to find such a job and continue working but I honestly don't think such a job exists. Hence, I guess for me at this point, I am lucky to have family to live with and help support me mentally, emotionally, physically, and financially so I am going to make taking care of myself so I can enjoy the most important things in life my new full time job and I'm resourceful and hope I can find a way to still put "my brains," as my grandma calls them, to good use, maybe even related to writing about CF or working to further support our cause.
I'm sorry this post is so long and really offers nothing more than sympathy to the job issue that many people with CF have to deal with. If nothing else, it is reassuring knowing I'm not the only one who has found it so hard to find a job that accommodates CFers in all respects, and provides both a livable wage and benefits.
Now I need to explain the district I was in is a VERY demanding one that has driven many that don't have my health problems away as it wasn't for them. I am and always have been an extremely hard worker and I will admit sometimes even a perfectionist and I will push myself basically until I hit a complete breaking point and absolutely can't physically do anymore. Well in this district, you had to "beat out" the other 60 new teachers for the 28 contracts available making your position permanent and ensuring your employment for the next year. Let me tell you, I was out to get that contract and I was starting from behind as a first year teacher when most of the people have like 5 years of experience when they get into the district. Long story short, I ended up working without missing a single day from the first day of school until Christmas break even though my body definitely told me I needed a rest, at least one sick day, well before that. I put in 10-12 hour days M-F, usually took Saturday off and spent all day Sunday at home writing lesson plans, grading papers, and planning for the week ahead. Well you can guess how taking care of myself and doing everything I was supposed to with treatments became a second priority and often got skipped or cut short. By Christmas break instead of enjoy my well needed rest, I ended up in the hospital needing IVs and had to fight for them to let me out so I could get back to work when I used up all 10 of my sick days the days after Christmas break. Obviously I rushed back and within a month I caught the flu, which went to my lungs, and landed me right back in the hospital and ended up forcing me to take a six week short term disability leave. I came back and successfully finished out the school year.
Unfortunately, in November of that year I learned I didn't get a contract but that I was doing a great job and would certainly be staying for a second year (you get a couple years to earn a contract assuming performance is good and there are positions available). Knowing about the unpredictability of my disease and that it has progressed and gotten a lot worse in the last three years, I was devastated because I knew I may not get a job year two should I get sick later in the year as good attendance is an expectation of the profession, for the students' benefit. Well another long story short, the district had to cut a lot of positions due to decreased student enrollment at the end of the year and my class section got cut so I was out. I interviewed for a couple openings elsewhere in the district but was beat out by other candidates in my same situation (had worked there all year but didn't get a contract). I will never know if my sick time off had anything to do with that decision or not. I know legally it can't and they had plenty of other reasons to site, more experience, whatever, but I can't say I haven't wondered.
I do live by the motto that everything happens for a reason and how hard I worked and the germs I had exposed myself to basically made me restabilize over the summer at a much lower FV1 (29%) then I've ever had. It has forced me re-look at my life and think about a lot of things. As hard as it was, I did absolutely love my job as a teacher and it has been extremely hard, I'm still coping with it actually, accepting that my health won't let me continue doing what I have a passion for, spent five years of college working towards, and am good at. That being accepted at least to a point, I spent most of the summer trying to find a job like everyone's talking about that would at least fit my medical/health needs if not also allow me to make use of my intelligence and education in some way or another because even though my body's failing me now my brain is not and I feel "guilty" not putting those "brains" to work and using them in some way. If I'm honest with myself and the way I feel, and my numbers more than confirm it, doing anything is just so hard anymore and all my treatments take so much time to do right that there is no way I can probably keep up most normal jobs, let alone a job my experience and education qualify me for, especially one as a full time elementary teacher; hence, I've been toying with making the call to go on SSDI at this time or not and unfortunately because of other things hitting me right now (husband who I am now dependent on for benefits completely out of the blue saying he wants a divorce, on our first anniversary, but that's a whole other topic) it is looking like SSDI is the way for me to go to ensure that eventually down the road I will be able to get benefits through Medicaid and eventually Medicare that I just can't go without.
I guess I just feel like I never expected to get this sick this young (maybe an atypical outlook for a CFer) and accepting that I can't work anymore has been really hard. Hence, if there is anyone out there who knows how to find a job like everyone is talking about that accommodates the time demands of caring for CF, doesn't have higher than usual exposure to germs, and is accommodating to needed a lot of sick time, oh and has good benefits I won't lose by missing work and getting sick, PLEASE let me know. I would absolutely love to find such a job and continue working but I honestly don't think such a job exists. Hence, I guess for me at this point, I am lucky to have family to live with and help support me mentally, emotionally, physically, and financially so I am going to make taking care of myself so I can enjoy the most important things in life my new full time job and I'm resourceful and hope I can find a way to still put "my brains," as my grandma calls them, to good use, maybe even related to writing about CF or working to further support our cause.
I'm sorry this post is so long and really offers nothing more than sympathy to the job issue that many people with CF have to deal with. If nothing else, it is reassuring knowing I'm not the only one who has found it so hard to find a job that accommodates CFers in all respects, and provides both a livable wage and benefits.