Blog #6 - Living With UC

Following my third grade hospital stay and some recovery at home, I recall a friend from school dropping off a big package including a pile of missed school work and handwritten cards from my classmates. And then it hit me that this condition, my fragmented school lessons, and this new regimented lifestyle were not just temporarily in my little world, but rather were now permanent fixtures. This was frightening for me, and I remember crying. When I opened the package of cards from my class I had mixed emotions. I was happy that my class didn't forget about me, but I was also upset that they knew I was “sick.” I didn't

really like the idea of others knowing about my condition. This remains true to this day, which is why writing my personal story is so challenging.

When I was well enough to go back to school, at least for half days while I worked hard to gain my strength, my classmates would ask me, “Are you okay Aamri?” Initially I would get irritated as it seemed like everyone was being nosey and invading my personal space, but once my mother and sister explained that my friends were only trying to welcome me back and make me feel comfortable in the classroom, I realized their gestures were not expressing nosiness, but were expressing support. In looking back, I see yet again another example of kindness and a show of empathy, but this time from my peers. I still have the box of colorfully decorated handwritten cards from my classmates, and when I think back, I remind myself how grateful I am that I received the support of my friends.

Throughout lower school I was absent every six weeks to visit my doctor and receive medicinal infusions at NYU Langone, which took several hours to administer and days to recover from. But the disruption to my life was not limited to the school that I missed for treatments. At week four or five leading up to the date of my infusions, my body would start to feel the effects of my immune system ramping up again to attack my own cells. My joints were achy, I would get headaches, and my legs would cramp. Not only was this exhausting to have to do every month, but also frustrating mentally because of the anticipation of what I knew was to come. The area of the hospital where I received my infusions had teachers walking around asking if patients needed help with any school work. I, of course (if you know me), would say no because I didn't really like unfamiliar people inserting themselves in my already aggravating situation. I was lucky to have support at school and at home that afforded me this privacy at least. And this is how elementary school ended for me: challenging but stable. This stalemate with UC did not last indefinitely, though.

I had just started middle school and was adjusting to a whole set of new academic responsibilities when I was burdened with a new issue: my medicinal infusions stopped working because my body became immune to them. Again, I had to find the time to go to my doctor, get blood tests, and check inflammation markers because we (my team!) did not want me to flare and start experiencing the type of terrifying symptoms that would land me back in the hospital again. I was put on a bimonthly injection which I had to administer myself. The shot was not pleasant, and I had terrible topical allergic reactions at the injection site. I had to take time off from school for blood tests on day five and day ten after the injection to see if my body was responsive to the medicine, which, we found out after a few weeks, it was not. So I then began to take only oral medication, which was one of the last options. It can often take many many years to find the right mix of medications to keep UC under control, and my experience was no different.

At this time the worst of my symptoms thankfully remain stable and my medicinal regime has remained the same for the past five years. I still need to visit my doctors regularly for blood tests to make sure my body is not being negatively affected by the toxicity of the medicine and that my organs are still functioning properly. I still feel a lot of fatigue at times and I have to be more careful about infections because of immunosuppression. Taking time off from school, especially at a fast-paced school like Horace Mann, can be tough, so I try to be strategic: I schedule my appointments when we have a day off even though I’d far prefer to be using the precious free time to have lunch with a friend, walk around the

reservoir in Central Park, play tennis, or spend an afternoon with my grandparents.

When I can’t avoid missing school, I try to plan ahead so that I can make up the lessons and assignments as soon as possible. I do want to note that with any autoimmune condition stress and anxiety can often exacerbate the situation. Hence I try very hard to keep my stress levels at bay to avoid unnecessary flares. Going to a demanding school forces me to have all my ducks in a row at all times. I have also at many times put my health over socialization and activities. From a young age I have had to learn how to live maturely. It’s definitely a juggling act, but so far I’ve managed well and I could not be more proud of myself.