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I’ve struggled a lot with identity and limits in regard to pain. It’s a persistent battle that I’m sure I’ll always be fighting. Chronic illness is something I have to think about every day.
I’ll be moving across the country for college soon, and as I prepare for this big transition, I’ve been thinking back on my past experiences.
My entire experience with chronic illness so far is a lot to unpack, so I’ve organized this post chronologically. The events go in order from oldest to newest.
I was first diagnosed with junior rheumatoid arthritis when I was four years old. Because of this, I don’t remember when I first experienced joint pain. My parents tell me that I would refuse to walk on my own.
In elementary school, my pain didn’t interfere with my activities much. I wanted to do everything. I loved being active.
There were several sports I participated in including soccer, gymnastics, and competitive alpine ski racing. I no longer participate in any of those sports, but ski racing was a big part of my life growing up.
I started medications other than naproxen in late elementary school. They were all injections administered by my mom. While I tried a few over the years, there was one that was notably bad. Every week I would sit down for the injection, and I would be vomiting half an hour later. It made me so sick that I couldn’t smell alcohol without feeling nauseous for years.
Because of my hate for this particular medication, my doctors suggested we put the medication in juice for me to drink. My mom would pour it into the same shot glass every week with a little bit of orange juice.
I can tell you with confidence that I will never enjoy orange juice again.
My abdominal pain started in eighth grade. It came on suddenly in class, and my teacher was kind enough to let me out of class to lie down.
My mom took me to an emergency room soon after. At the time, we thought it was appendicitis. After a quick stay, we were told that I did not have appendicitis and I was told to go home with no other insight about my pain.
I saw a gastroenterologist not long after this. The diagnosis process is a bit fuzzy, but I know it involved a colonoscopy and endoscopy. I absolutely hated the experience, and I’ve had the pleasure of doing it three times now.
After some tests, my doctor diagnosed me with inflammatory bowel disease. The diagnosis was tentative, and it still is. My tests were never conclusive enough to get a true diagnosis.
Something I discovered recently was the diagnosis of eosinophilic gastritis and colitis in my medical records. It’s likely that these are tentative diagnoses as well, but my doctor never even bothered discussing them with me.
I found a new rheumatologist not long after getting my IBD diagnosis. This new doctor took one look at my fingernails and told me I had psoriatic arthritis (fingernail pits are a common symptom). In all honesty, the only thing this changed for me was what I called it.
I don’t remember if the re-diagnosis is what caused a medication change, but I switched medication around this time as well. It was a monthly IV infusion that I had to spend hours at the hospital. It didn’t cause too many side effects, but they always gave me Benadryl, which caused a lot of grogginess the following day.
This is a topic that I could write an entire post on. Chronic illness has a way of sneaking into every crevice of your life, and it’s difficult to cope with.
After my eighth-grade year, I quit ski racing. I had decided that the steep price wasn’t worth the pain it caused. I was missing too much training and pushing my body past its limits.
This was a blow to my identity and self-worth. I started ski racing when I was seven, and I thought that I would always identify as a ski racer. It took me two years to get back on skis. Part of me was ashamed that I had quit racing, so I avoided going at all.
I suspect that ski racing is something I’ll always miss, but I’ve since found other passions that keep me occupied. Chronic illness affects every realm of my life, and it’s something I always have to be wary of.
My freshman year of high school did not bring much luck to me. I was still struggling with abdominal pain and ended up missing nearly 100 days of school. Despite having a 504 plan, teachers refused to give me missed work. My teachers also accused me of skipping class. I pulled some D’s that year and even had to drop a core class.
There is one interaction in particular that sticks in my mind from freshman year. A teacher offered my group extra credit if we all helped put away the class’ (heavy) textbooks. I denied the offer to avoid the strain on my wrists. I jokingly said that my arthritis was a bad excuse. A girl from my table shot back, telling me that it was, in fact, a bad excuse.
After my experience at a brick-and-mortar school, I decided to try a virtual alternative. I attended lectures from my laptop and completed coursework from home. The experience allowed my pain levels to go down, but I lost most of my social life. On the one hand, I could stay in pajamas all day. On the other hand, I had limited social interactions.
During this time, I switched medications again. I was developing an allergy to the IV infusion, so we had to stop. I started a twice-monthly injection at home, which I still do to this day. It doesn’t cause many side effects, which I’m very grateful for.
For my senior year of high school, I opted to take a few classes at a different public high school. This allowed me to have some social interactions while not overwhelming my body.
I made it about halfway through my senior year before experiencing some new symptoms. At first, I thought it was a bad arthritis flare, but the symptoms deviated from a typical flare. My rheumatologist later confirmed that my arthritis was not flaring.
We also tested for Hashimoto's disease due to my family history. We found elevated antibodies, but no abnormal hormone levels.
I visited a few doctors before deciding to see a new specialist on Fibromyalgia. My rheumatologist had mentioned it but was not very helpful in offering solutions.
The specialist diagnosed me with Fibromyalgia after a very lengthy appointment. I was lucky to get such a quick diagnosis, but the doctor pushed medications on me. I’ve opted to avoid them for now, but the specialist continues to push it as an inevitability of fibromyalgia.
This brings us to the present. I have a few weeks left in my senior year of high school and I am looking forward to college. My self-care routine is always changing, and it will continue to do so as I learn to manage new symptoms.
If you have read this far into my post, I would like to thank you. I know that this was a long, very personal post. I wanted a post on my blog that gives a brief overview of my experience with chronic illness, and I hope that this sums everything up well.
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