Readjusting

I can't believe I have been back at school for almost three weeks! Time has flown by, and classes start this coming Tuesday. Over the last three weeks, I have been working in the housing office at my school, which was the perfect job for me, because it was regular, not overly physically demanding, and my coworkers and supervisors were more than accommodating. It has helped build my confidence that even when I am feeing pretty crummy, I can still be pretty functional.

Health wise, I wish I could say that my health cooperated with this adjustment. I'm not sure if it is the change in evnerionment, stress, or my body just being pissed off, but I can't seem to get things to calm down. We still could not reduce my steroid dose without significant complications, so I was started on an immunosuppressant, Cellcept. Cellcept is typically used as a medication to prevent organ rejection. As a result, the side effects and precautions I have to take with it aren't pretty. Getting sick could be detrimental to my health, so I have to be even more cautious than I was before about not getting sick- wearing a mask in crowded public places, staying home when bugs are going around school, constantly wiping surfaces, etc. I also started an antibiotic which I will have to take indefinitely to try to prevent some types of infections. I take my second dose tonight, and that I take three times a week.

In addition, my POTS has been flaring as well. My heart rate has been going pretty high, and I get dizzy after standing for more than a minute or two. To try to help that, we increased one of my medications, and I am doing infusions of saline at home. On top of that, my insurance decided that they no longer want to pay for my oral chemotherapy medication, Gleevec. I have been off of it for four days now-- days one and two were ok, but now I am having increased reactivity, bone pain, and fatigue. I am hoping that as the Gleevec wears off, the Cellcept may start to work. I was not having to use any EpiPens or nebulizers for a while, but now I am back to needing them every 3-4 days at a minimum. Assuming that my blood counts are ok, the Cellcept is supposed to be increased soon.

I'm really hoping that transitioning back to classes will go smoothly, and that the lack of Gleevec don't have any detrimental effects. I am trying to distract myself, but its hard when I'm feeling consistently pretty crappy. I have been trying to maintain my physical condition by doing my PT exercises (stationery bike, resistance exercises) both in my room and in the on campus gym, but the gym is kinda a germ pit, so I have to be careful.

Socially/emotionally, it has been great to see people who I haven't seen in a while. I have some great friends and support networks here, and it is really nice having my family close by. I was able to go home last weekend for a break. But being back on campus is a major adjustment-- a lot of people see my port or the pump and kind of treat me like an alien. Its hard not to feel like people are staring, but I know there is not much I could do about it. Sure, I could wear super high cut tops and try to hide everything, but I don't think that I should have to wear uncomfortable clothing when it is super hot out for other people's comfort/lack of understanding. I think over time people will be able to see beyond it, but in the mean time, I feel a little bit like an outcast.

For this semester, I am taking a full course load, and I plan to work in the on campus Writing Center. I have classes starting Tuesday, and training for the Writing Center next weekend. I am not going to lie, I'm feeling kind of discouraged about everything, but I try to keep reminding myself that I was successful in my job the past three weeks, even with all of the stress and adjustments. I am kind of reconsidering my career goals too- I'm thinking of maybe doing something along the lines of education, and maybe holding off on grad school for a while. Part of it is because I feel like if I don't know how much I'm going to be able to work,  I don't want to build up debt to put myself through grad school. Another part of it too is if I'm not 100% set on what I want to do, grad school may "trap me" in a sense.

Anyways, I will update as I can, hopefully with better news! Until next time.