My Herstory, part 1
I’ve said in a previous post that I would relate more of my background regarding why I am so interested in creating a community for the chronically ill. This interest has been steadily building over the last five years, and continues to build as I realize more and more doctors are ill-equipped (in a lot of ways) in managing such illness: many lack the compassion, the imagination, the empathy, and the desire to work with the patient to, like me, find a diagnosis, and subsequently treatment, or discovering new forms of treatment. ***** It begins in the winter of 2012. I, a senior at college, am struggling to finish my exams. I’ve received word on varying family issues, been losing energy, and also trying to meet a schedule I thought wouldn’t be as demanding as it ended up being (having no car made it worse), and at wind up in the lurch, feeling totally frustrated. I’m studying in the library with my fiance (now husband); situated along the stacks, we have taken up two large chairs with our backpacks, books, and me, my tears. I’m fighting to focus on the words in front of me when my right arm begins tingling. You know when an arm or leg falls asleep, you can shake it a bit, and get the pins-and-needles sensation of circulation returning? It wasn’t that. I constantly shake my arm, and nothing happened. I am losing feeling in it entirely, unable to make movements with my fingers. Panicked, I ask my fiance whether it’s a good idea to go somewhere for it or not. I’m a mild hypochondriac (which, as I have discovered in time, is in part due to being somewhat manic), and my body is severely sensitive to stress (unfortunately; there was an incident in fifth grade where a teacher couldn’t get me to stop crying). My fiance and I both attribute the numbness to my worries over passing and graduating. In the meantime, we head back to the dorms, but as we walk the numbness gets worse. I start losing sensation in my upper arm, then my shoulder. I’m not moving comfortably. We find a way into the closed-for-break psychology building to make a call to my parents and get their advice. Both suggest I wait and see – if the problem is aggravated, or appears to get worse, find a way to a medical professional. In the meantime, get some rest, stop worrying, and good luck on exams. My fiance, already impatient with me, gives me an “I-told-you-so” glare – not a mean one, but one of resignation and exasperation. I’m notoriously difficult as a patient (because I ask questions) and he was not wanting to waste precious study time on a fruitless appointment. So we make it to the dorms, and go to our separate rooms. He wanted respite from my anxiety, and I, quite frankly, wanted the numbness to end and get some sleep. Neither happened. Instead, the numbness creeps up my face, on the right side. I can’t feel myself talk, my words sound strange, and the world feels fuzzy. It’s about midnight now; I’ve tossed and turned, trying to ignore the creepiness of having no feeling in my arm. (If you know anything about strokes, or migraines, you are on the right track. You are also right in being alarmed I waited so long in getting help – for strokes in particular, timing is key in treatment and survival.) I call my fiance from down the hall and tell him I need help, that it’s gotten worse. The only thing we can do is call for campus police to take me to the hospital. My RA is woken up to assist in what little way she can, mainly, supervising me so I don’t get worse. I have this distinct memory of feeling confused and sad as I watch out the dorm doors for the police cruiser. I’ve lost total control of my right side, and internally, it’s wreaking havoc; panic for me, panic for my fiance, for my poor RA being confused, confusion in not understanding what is happening, alarm for what it could cost me, and anxiety about whether or not I was going to be okay. The ride to the hospital is spent with my fiance explaining to the officer why we needed aid, and what my symptoms are. I spent it looking out the window, feeling lost. The feeling of being lost continues as I am admitted into the hospital. Now, different hospitals have different protocols for stroke-like symptoms. For the one I went to, it included direct admittance after triage. The next hours are anxious. I see one doctor who has me perform or attempt to perform basic nerve actions (finger manipulation, finger taps, and so on). After my feeble attempts, he gravely says, “Stroke” and leaves. I never see him again. The word carries a death knell inside me. I was earning my degree in English – my whole skill set revolves around using my mind creatively. If I lost use of my mind, how could I continue? I am then moved to a room to get an MRI. It’s my first, and the only one in which the radiologists on staff tried to ease my anxiety with music – they give me large headphones, on top of the cloth already in my ears, and play Christmas music. My fiance spends the night with me, waiting on the results, and they are thus: a complex migraine, at a severe level. My brain scan was clear – which, although confusing to the doctors and my fiance and myself, meant that the doom of a stroke was not in my immediate present. I am to spend my time resting, and maneuvering my schedule according to this new diagnosis…which meant no stress, avoiding hormones and hormonal birth control, and find a neurologist to work with to determine treatment options. ***** Since then, I’ve experienced a wide variety of migraines. My most recent one was another severe complex migraine, hospital visit and all, albeit in a different town with a slightly more rigorous protocol (though, alas, no music). It was this hospital visit– with the doctor I never saw again, with a doctor who randomly stopped in the hallway to evaluate my facial nerves, with the overall confusion - that set me on the path of interest in my body, how to navigate symptoms, and in conjunction with that, how to manage medical professionals of all kinds: nurses, doctors, CNAs, and so on.
I say ‘manage’ a little in jest, and a little seriously: not all doctors listen to their patients, not all nurses are trained in understanding chronic illness, not all hospitals have a good stroke protocol or medical professionals available. In a healthcare system bogged down with too much paperwork, overworked staff, and understaffed facilities, it is imperative to do as much self-advocacy as possible.
While this was the first experience, it was certainly not my only experience that has motivated my learning about the human body.
