It seems like Thanksgiving was months ago, not weeks. Maybe time is going by slower for me because being unemployed is starting to get to me.
Granted everyone hates "the Mondays" but when you don't get to experience them anymore its almost worse. Yes, even when I was working "the Mondays" would hit me occasionally but most of the time, if I wasn't sick, I enjoyed waking up, getting dressed for work and heading out the door. I think back to working last year and even in the dead of winter (which was brutal last year) I loved that feeling of going to work. Call me crazy, but maybe I knew working would only last so long. Also, growing up my dad always said, "Do something you enjoy and then you will feel like you never worked a day in your life." Most people know those who are involved in working at a non-profit, work for the love of it, not for the paycheck. For me it was certainly that. Although there were some days were I said I don't want to do this the rest of my life (prospect research), I'd rather be involved with talking to donors more- it was all a stepping stone. I tried for 9 months to "be normal" and work. I could only handle part-time, and even then it was too much sometimes. CF got the best of me 4 or 5 times during those 9 months and unfortunately put me out of work for upwards of a month one time. Most of the time, a week or two. I was very lucky to work for such an incredible company, and bosses who understood CF and allowed me the time I needed for a proper recovery. Obviously in the end it didn't work out, or I'd like to think I would still be there, but I was very fortunate for the experience. While I was working, I liked to do my best. Of course there were times I wasn't feeling good and just went through my work until it was over and I could go home and snuggle in bed, but the days I felt good, I tried. I loved dressing up- wearing dresses/skirts, heels, jewelry, make-up the whole nine yards.
Ideally, I would like to find another part-time job but I know it is probably best that I focus on my health. Doing the Vest, and nebulizers 2-3 times a day adds up. I know if I worked I would cut them out and essentially let my health go. Sleep is hard to come by as well, causing me to either nap at weird times during the day or not at all. I will sleep for a few hours at night if I'm lucky, but ultimately wake up coughing or gasping for air. The blood continues as well, although its been manageable not more then a few ounces or tablespoons. Although it usually comes with pain. Sometimes are better then others. There have been nights where I lie in bed where every breath in or out hurts. I try not to move and just hope I will be able to fall asleep and forget about the pain but sometimes the sharpness is too much. There is nothing to do about that other then just hope it goes away. If I feel up for it, I drag my tired body out of bed and into the living room to do another round of the Vest. The pressure of it, squeezing your ribs, is almost soothing. It also helps if I am having a coughing fit. I don't think the Vest itself does much, but sitting up and not laying helps.
Without sleep my body quickly drains and I have pushed it to the limit many times. I tried a full time job, well really it was part-time but I worked 43 hours that week and then around 38 the following. Of course, by the third week I was in the hospital. I was asked to help out and work more hours and of course I said yes. It was a good experience for me because I had convinced myself I would be able to handle full-time. 43 hours is typical for a full-time job, and for me I was exhausted. I was so happy to see what it was like and "complain" to friends about how I was on my 3rd cup of coffee because I was tired but it wasn't even that kinda tired, my body was literally aching. I loved taking the el though and being surrounded with people my age going downtown for work. I loved that feeling of coming home at the end of the day and feeling accomplished.
People would love to be able to stay home and not work but its nothing to brag about. I feel like a debt to society. Luckily, I still look young so people assume I am in school still as I walk around Jewel mid-day grocery shopping, or read a book at Barnes and Noble. I think I would feel more self-conscious if I looked older and did nothing with my day. I know I shouldn't care what other people think, but I do. I worry that because I don't have a job, or am in school I just fail society. Growing up when anyone asked what I wanted to be, I fiercely proclaimed a lawyer or judge. I never pictured unemployed in that dream. I still dream of being a lawyer or judge, but its more of a wish then reality. Yes, I graduated college with honors but it took 5 years, 2 schools, and countless hospital stays. Most of my courses, toward the end, were primary lecture but assessments were on papers related to the topics. I was able to do the readings on my own and able to catch up when it was more convenient for me. I know law school is also primary lecture, however your assessments are what was given in class. I am sure reading the material on your own would help but it would be really hard to pass while not actually attending class.
Which brings me back to transplant talk. Obviously it has been on my mind all month long. I've thought more about it, and researched more. I am slowly, and I mean slowly opening up to the idea of it. The complications and risks still exist and worry me but the gift it gives is worth it- life. It is still not known if I make a good candidate for transplant and if a center will list me but it is a conversation I am willing to have.
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