Update: Almost five weeks after the first surgery and three weeks before the second surgery, I am still getting better but also feeling better. I was able to endure another blockage on Tuesday, in a museum, where I didn't have my medications with me. Saturday I had another one. It wasn't the most enjoyable experience but making it through without pain medications convinced me that they don't really help me as much as they make me nauseous. On Thursday I went into San Francisco all on my own, using public transportation. It was the biggest outing I've had since surgery and although I was completely exhausted and my stoma hurt quite a bit by the time I got home, it felt really great to do something independent.
It's time I filled in the story between the success of Azathioprine and surgery. As Azathioprine - to review, an immunosuppressant taken as a pill that takes two to three months to work - clearly had begun to work, my doctor increased my dosage to see if I could get even better. I also had to continue to do one or two blood tests a week to make sure that my liver was tolerating the medication. That actually gave me something to do - I wasn't doing much, but I could ride my bike a flat mile to the clinic and wait in an office for a short time, plus catch up on some celebrity gossip magazines.
I continued to feel better so I went back to my summer internship with my senator and got a part time job as a cashier at cookware store. Being a cashier was pretty difficult because I had to stand up for long periods of time and required a lot of energy, but it was a great way to get out of the house and forced me to be as functional as I could. While I had hoped and planned to go back to school in the spring even when I was at my worst, ir wasn’t until December that it was clear that I could go. My pain had become predictable in a way that I could plan how to function around it. I was in extreme pain the mornings for a couple hours and felt like I had the flu for the rest of the day. I knew I just couldn't take early classes, couldn't wake up ten minutes before class and would have to limit my commitments in a way I could cancel at the last minute or organize my time independently. Doing research for a professor in the library on my own, taking the least desired copy editor shift to lessen the number of shifts I had per week, setting up my own tutoring schedule as a French tutor for the Academic Resource Center Being, going to church, and being a sister in the professional foreign service sorority DPE allowed me to do things my way. I went when I could, but when I couldn't I didn’t sweat it.
As I packed up to go back to school in January, I couldn't really believe that I was actually going to leave the care of my parents and the little sick world where I had managed to convince myself I had returned to some kind of normal. I weighed just over 100 pounds. I was nervous for the plane flight because the change in pressure tended to increase my pain and internal bleeding for a while afterwards. It ended up taking me a month to recover from my flight out to DC. Still, getting back to Georgetown was just great. Seeing dear friends and having so many things to do brightened my spirit. I was very hopeful for how much better I would get in the coming months. My doctor in Berkeley had predicted that I would just get better and better. It seemed as though I had responded to a drug well enough to go into remission (which is when someone with a chronic illness is symptomless - the disease is not cured) and avoid surgery.
 |
| I could do things like bake 18th birthday cakes for my Kitty. |
 |
| Enjoying some fresh ocean air in early January. |
 |
| My parents and I went hunting for wild chanterelle mushrooms. My mom is really good at identifying them. I just follow her around. Then she cooks them and I eat them! |
No comments:
Post a Comment