I Have a Rare Disease, but It Doesn't Have Me
Dear Rare Disease Patients,
I struggled with ongoing lung symptoms for two years. I was referred from one specialist to another without any clear diagnosis. I donated my share of blood for testing, and I have mastered the stillness and calmness of CAT scans. My emotions have become immune to the process of new doctors, new tests, new procedures and new surgeries.
I know the process of checking into the ER. I can rattle off my medications without looking at the note card in my wallet. I remember to always have a hospital bag packed with a cell phone charger, a movie and my own pair of socks. I can navigate the hospital better than I can my own college campus. I know my health insurance policy number, as well as the phone number. I have waited to receive a room until 3 in the morning, and I have adorned the ever-fashionable hospital smock with multiple plastic bracelets. I have managed to become accustomed to a lifestyle I did not choose.
Eventually, I was diagnosed with dendritic pulmonary ossification. These sounded like scary and unfamiliar words. I remember I had to ask my doctor to explain what this really meant because I was taken aback. I was told my lung tissue has bone fragments or calcification deposits growing. I was also told my lungs form cavities or holes in addition to small nodules that turn into scar tissue. The scar tissue prevents my lungs from receiving oxygen unlike where healthy lung tissue disperses oxygen to the rest of the body.
I did not grasp the seriousness of this condition until I was informed it’s an orphan disease and is normally seen in the elderly. I was told my condition falls under the category of an “Interstitial Lung Disease” and there was not a cure.
I felt like a rare and unusual case, but that is because I am. I am an entity composed and comprised of a disease that is not known. I am the possessor of a body that has a disease without a lot of knowledge or background. My disease does not have cure or an effective treatment.
There are days when I thought, “How this could have happened to a person who ran five to six miles a day four to five days a week?” I thought about how unfair it was for me to have to spend more time at appointments than in my junior year college classes. I thought, “How could have I been dealt such an unfair hand?”
Yes, I have a disease. Did I chose an orphan disease? No. Did I want my quality of life to be drastically altered? No. Did I want to adopt a schedule centered around nebulizer treatments and medication? No. Did I like going to hospital once a week for four months? Heck no. Did I want to educate my doctors on my disease and new symptoms? Absolutely not.
I have a disease, but disease does not have me. The disease will not tighten its grip because it is one of a kind. I will not take the label of being the sick girl or the sick student or the sick friend. I am not going to let the unknowing-ness disassemble my strength. I am only at the beginning stages of this disease, not at the end, and I am not going to let the ambiguity and uncertainty become a resident in my mind. I still have dreams and aspirations of becoming a child life specialist, and frankly, that dream is more magnified and crystallized now than it ever has been. This disease may be a rut in the road, but it will definitely not become a root of my authenticity.
I have been told that the prognosis is unknown, that a treatment is not established and that a cure has not yet been developed. This may seen disheartening, depressing and hopeless to some, but I have my voice, my updates on symptoms and my follow-ups that can pave the path of a possible treatment or a delay of the disease.
I can help those who are not yet diagnosed, and I, right now, can acknowledge the fear, the vagueness, the patience running thin, and the disbelief of Interstitial Lung Disease patients with dendritic pulmonary ossification.
A Fellow Rare Disease Patient
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