Monday, April 3, 2017

10 Days of Freedom

         I flew back to New Orleans last night and will be flying home again next week for Easter break. This means that I am only actually in school for 10 days before I go back home again. Unfortunately, most of my spring break, plus the extra medical week I took beforehand, was packed with doctor's appointments and tests (a blood draw, finger prick, lots of spirometry, two x-rays, a CT scan, and an MRI). I saw three specialists along with my primary care doctor, and in between all of these appointments I was forced to make repeated trips to radiology clinics as my medical team attempted to gather as much information as possible. I need a break.

        Accordingly, my family and I created a goal for these next 10 days that I am in New Orleans: no trips to the Student Health Center (excluding my allergy shots, which I must receive later this week).

A sweet (and beautiful!) welcome home sign that my roommate, Allison, made for me!

         Given the frequency and severity with which I am sick, I genuinely feel that the Student Health Center should be awarding me class credit for the many hours I have spent in there being examined, diagnosed, treated, and monitored. It takes up more of my time that any of my extracurriculars.

Using my new nebulizer while I do homework

        Ten days may not seem like a lot of time, but, if successful, it will be my longest stretch without doctors in months. Luckily, this mission has been made possible by my new nebulizer. Many of the treatments I was having to rush into Student Health for before are now available in my very own dorm room. I am not feeling too good arthritis-wise (my left hip was killing me after my flights yesterday, and today I have some swelling in my right wrist) and because I am on antibiotics right now I am having a considerable amount of nausea, but there is not much that they can do about those things anyway. My rheumatologist, parents and I have decided not to allow me to have any more steroids for the time being, which is a complex decision, but I am hoping that some of my other medications will rise to the occasion and manage all of the inflammation in my body.

       I cancelled my Thursday appointment with my New Orleans rheumatologist, because anyone who writes off my symptoms (see: Three Lessons from a Sick 17-Year-Old) is just not worth my time, and my North Carolina rheumatologist is on top of some of my more immediate arthritis issues at the moment. Sometimes you just have to put your foot down and realize that you deserve better.

       Wish me luck! The 10 day countdown has begun.

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