Saturday, October 28, 2017

Hard Times

      Hello friends.

      A lot has happened since Mortality Beach Day. Between visits with/referrals to rheumatology, pediatric rheumatology/immunology, oral/facial surgery, ENT, infectious disease, dermatology, pediatric cardiology, pediatric gastroenterology all in the past two months, I am feeling bounced around and exhausted. We seem to always go back to some sort of rheumatological problem, but we do not have a name or cause. These are hard times.

Shout out to my beautiful friend Spencer for this lovely post-operative gift!


      Sometimes I wish I could bring a scrapbook of my life with me to show each new doctor I see. I want to tell them that I once fell in love with the city of Krakow, that going to Target with my sister is my favorite thing, that twice I built gingerbread creations for a national competition, that I live for excessively long walks in Audubon Park. I want them to see me as a person worthy of being well. I want them to understand how far I am from my best state so they feel the urgency I feel in figuring this out and returning me to a healthier state.

      Perhaps the cruelest part of this entire thing is that the period before a diagnosis is the most challenging. It is when you need the most support, yet have no idea how to ask for it, because you don't even know what is wrong with you. All I can do is try to describe symptoms, abnormal tests, appointments, and procedures. Sometimes I feel like I am telling my friends just to remind myself that all of this is real, that it is happening, that I am not crazy, and then I feel annoyingly self-absorbed for talking about my own problems so much, and I feel like people must be pretty tired of hearing about my illness because I have been sick for literally the entirety of my college experience. The funny thing is that if someone told me that they were annoyed, I would be in complete agreement. I am so sick of this always being on my mind. I want to go back to Krakow and Target and gingerbread creations and Audubon Park.

An early morning upper endoscopy
that took place on Thursday.
     A few nights ago, one of my bizarre symptoms conveniently appeared while I was with my parents, and they were able to objectively feel with their hands and see with their eyes what was going on. And even though the symptom was uncomfortable, there is so much relief that comes with being seen. I have been thinking about this "being seen" concept and trying to apply it in my friendships, to make sure that people feel validated and real. I suspect it is a concept that can branch outside of the confines of illness, but then I also feel like perhaps I am making it much deeper than it needs to be.

     I am trying to stay at school and on campus as much as possible, because I desperately want to make friends and keep up with the friends I have, but it is sort of like when you have the flu and you just want to go home. Friends have been visiting and hanging out with me and watching "The Great British Baking Show" with me, which has helped immensely, but when I am alone I crave the presence of my mom and my cat, and I find it more difficult to distract myself from pain and discomfort in the quiet.

    Last night I went to see a show and hung out with friends, typical college things that I should definitely be capable of doing. My heart was so full. And then I got back to my dorm and was overcome by muscle spasms, lung tightness, and nausea. I fell down on the tile in the hallway, not hard but enough to embarrass me and strip me of some of my dignity, and I threw up in the bathroom, and when I used a breathing treatment, which I felt was necessary given my tight lungs and nausea, I found my heart racing and my body shaking. It was a defeating and humiliating night. I felt completely betrayed by my body. I felt embarrassed by my symptoms.

     Perhaps I am too hopeful about finding answers. Maybe we will never know what has caused this odd myriad of symptoms. I am admittedly quite daunted by the prospect of more appointments and referrals and tests. I feel frustrated that we have resorted to pain control, because it is a Band-Aid solution that is masking a problem rather than treating it. I am frustrated with myself, because I am so intimately close to the problem yet cannot identify it, and I wish I was feeling stronger and crying less. I wish I was better at advocating for myself, and at the same time I don't want to come across as a jerk or a difficult patient to the specialists I am sort of reliant upon at this point.

     These are hard times.

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