Young, Sick, and Invisible: A Skeptic's Journey with Chronic Illness
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Young, Sick, and Invisible: A Skeptic's Journey with Chronic Illness
224eBook
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Product Details
| ISBN-13: | 9781634310741 |
|---|---|
| Publisher: | Pitchstone Publishing |
| Publication date: | 04/15/2016 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 224 |
| File size: | 965 KB |
About the Author
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Young, Sick, and Invisible
A Skeptic's Journey with Chronic Illness
By Ania Bula
Pitchstone Publishing
Copyright © 2016 Ania BulaAll rights reserved.
ISBN: 978-1-63431-076-5
CHAPTER 1
An Inauspicious Start
My story starts with a creak. Actually that's not entirely true, but the creak was the first instance that sticks out clearly in my mind. It was a Friday. I remember because on Fridays I had my chemistry course's laboratory section. It was my first year in university. Although not my first time being away from home, it was my first time completely on my own. It was in mid-September, long enough after my arrival for me to have gotten somewhat used to the whole situation, but still fresh enough to leave me uncertain.
On this particular Friday, my right hip began to make an odd creaking noise whenever I moved it. Although I noticed the sound and sensation, it wasn't unpleasant enough to elicit any major concern. My joints had always been strange and a source of discomfort. When a short while later the creaking turned into soreness, I still didn't think much of it. I was more excited about getting the chance to have lunch with my crush. I had no way of knowing that that creaking would be the start of a saga of pain, suffering, and disability that would change my life forever.
By the time my laboratory class had started, things had already progressed further. I could barely stand. My lower back felt as though someone had shoved a thick, rusty, hot needle through my spine. For the first time, I left most of the work to my lab partner as I tried to stay on one of the stools and not cry. I counted down the seconds for the class to end, until I could get out of there. As soon as our TA gave us permission to leave, I hobbled my way slowly to the university walk-in clinic in the building next door.
I don't remember exactly what I was thinking as I sat there. I wasn't expecting much. The clinic had a policy against prescribing opiates, which defined most pain meds. Unless something really caught the doctor's eye, I doubted there was anything they could do right away. Some part of me was counting down the seconds till I could get back to my dorm and take something for the pain, while another part of me was panicking over what could be causing this agony I was in.
The sudden onset, the extreme level of pain, and the difficulty with movement concerned the doctor on call. She apologized for her inability to prescribe me something for the pain and was relieved to hear that I already had some Naproxen back in my dorm. Earlier that same year, my family doctor back home in St. Catharines had prescribed Naproxen to treat the severe pain I experienced during my period. I did not take them regularly, only when the pain was bad enough to interfere with my everyday activities. The student health doctor suggested I go home, take the meds, and rest. In the meantime, she would arrange for a scan and some tests to figure out what the problem was.
I made my way home slowly, pulling myself along the walls and trying to keep myself from falling. The clinic was only a short five-minute walk from my residence. That day, the walk took me close to an hour. The sight of the three steps that led to the doors almost made me cry. I had finally made it. I took the painkillers immediately. The rest of the day, whenever I needed to walk somewhere, I used a chair as a walker. My father, who suffers from back problems, suggested that I sleep on my side with a pillow between my legs. The next morning, I woke up feeling better. Though I was still a bit stiff and sore, I filed away the episode as just an anomaly and mostly forgot about it.
Forgot that is, until the doctor called with my CT scan appointment a few months later. Although the pain was gone by then, something had to have caused the pain, and perhaps the scan would show something. This was not my first CT, having had one the year before after a bout with pancreatitis. The machine looks like a giant donut. You lie on a stretcher that moves back and forth until the technician completes the imaging. The whole procedure takes just a few minutes.
The clinic doctor called me back into the clinic a few weeks later. The scan had found some swelling in my sacroiliac joint, the one that connects your hip and pelvis to your spine. My right one was swollen enough to be noticeable even months after the pain had gone away. The doctor gave me a referral to a rheumatologist who would determine the cause of my swelling.
The rheumatologist was a really nice guy. We talked about the fact that he went to school with Sandra Oh. He did a quick medical history, asking whether arthritis was present in my family. He also asked about other conditions, such as psoriasis. His assumption was that the pain had been caused by even greater swelling in the joint earlier in the year. The Naproxen would have lowered the swelling and thus caused my miraculous recovery. I left the appointment with a diagnosis of psoriatic arthritis and a prescription for more nonsteroidal anti-inflammatories (NSAIDs) if I needed them. As it was explained to me, the arthritis was no big deal. It meant that I would have some pain from time to time and some stiffness in the mornings, but other than that it should have no effect on my everyday life.
Although at the time the diagnosis seemed mild, I was devastated. I was an eighteen-year-old girl with arthritis. I had never been on a date and had never even been kissed. I was convinced that if people knew that I was defective, I would be alone forever. In the typical melodrama of youth, I thought that this would be the worst thing to happen to me.
CHAPTER 2A Buggy Summer
Bed Bugs
Tiny little spots of darkness
An Army
Crawling across a desert
Of pale white
Raising mountains as they pass
Drinking from rivers of red
The ground moving
Like a giant sleeping
As the army marches across
The vast expanses
Sleep Tight
Don't Let the Bed Bugs Bite
That summer, I had been offered a job as a counselor at a children's camp. The training would start around mid-June, and the job itself would start in late June through the summer. I had left my residence hall and just moved into my first apartment: a room in the basement of an older couple's house. They had renovated their basement as an apartment for students, and it had multiple rooms, a large kitchen, laundry room, two toilets, and a shower.
I wanted the chance to experience freedom, so I decided to spend the weeks before camp in Ottawa. I found a temporary job at a Polish deli. There was a lot of standing around and lifting of heavy things, which left me feeling stiff at the end of my shift. On the second day, my boss brought up concerns that the other employees had had with my work; they had noticed me limping and were worried that it would affect my performance. I told my boss about my arthritis and she became even more concerned. She kept asking me if I was sure that I was up to the job. At the end of my third day, my family had a minor emergency that required me to return home to help take care of my little sister. Although I left for reasons other than my health, the feeling that my job had not been secure because I had a medical condition left a bad taste in my mouth.
Rather than seeing whether I could do the work with my condition, my boss's first reaction had been to doubt my abilities. I had done my work well, just with a limp, and the other employees had thought that justification enough to discuss my desirability as an employee with the boss. Even years later, whenever I go into the store, I have a hard time not feeling self-conscious and judged.
My time at home was pretty normal. The only occurrence of significance was being called in two weeks early to the camp, for a weekend's worth of training. The camp had arranged for all counselors to get lifeguard training to receive bronze medallion and the bronze cross certifications. In the coolness of May, the camp looked like a paradise. The cabins were like little hotels, with couches, running water, and the promise of air conditioners when the weather got warmer.
While there was some concern about how cold the water would be this early in the year, we were assured that it would be fine.
It wasn't. The water, when we jumped in, was freezing cold. But we're Canadians, we can take it, right? We proceeded with the course, making sure to stay moving to keep ourselves warm. It was an adventure. After training was over for the day, we swarmed the showers to warm ourselves up. Despite the heat of the cabin water, I could not completely dispel the cold that had seeped through my body. Moreover, I felt as though someone had placed a vise around my ribs. They felt similar to the time my sister bruised them when we were kids.
I went over the day in my mind and could not figure out when I might have injured them. When my back also started to twinge, I felt relief. Clearly the cold had set off my arthritis and all I needed to do was take my pain meds and relax for the evening. To that end, I excused myself from the campfire and stayed in the common room bundled up in a blanket reading. My ribs felt so tight that I could not fully catch my breath. I hoped that I would be better by the next morning, but I worried about what would happen when we went back into the water the next day.
Luckily, our instructors saw the light, and we were not forced back into the freezing water. Instead, they managed to find a local pool willing to open up their facilities for the training. We spent the day brushing up on the techniques necessary for pulling victims out of the water, performing artificial respiration, and so forth. By mid-day, my ribs still felt quite restricted, and I found it difficult to take full breaths. Although I had no trouble with the technical and lifesaving aspects of the training, I failed the speed and endurance test. Swimming thirty laps in fifteen minutes when you can't breathe is damn near impossible, though I came close, being only five laps short. I received one of the two certifications, and was not allowed to be the only counselor on duty during camp swims. More importantly, however, I felt the first impacts of my diagnosis of arthritis. I now knew I had limits, and while scary, they did not seem serious enough to be frightening.
We came back to the camp just a few weeks later for our job training. The weather had gotten much warmer, and we had to learn to cope with the realities of being in wetlands during the most humid months of the year. Another unexpected hardship was that the air conditioning systems had a pretty significant design flaw; rather than removing the humidity from the air while cooling, the ceiling vents accumulated thick droplets of water. These would rain down on us, the furniture, and the bedding. Our sleeping bags and bunks were almost permanently damp. We also discovered that, like many hotels throughout North America, this camp had been infested with bed bugs. I would wake up every morning with a new assortment of bites. It was only when they started showing up in places where no mosquito would have access did I realize what was going on. When the bites started swelling to the size of quarters, I realized that I was allergic to them.
Being a camp counselor is an incredibly intense job. We had to wake up early in the morning to get ourselves ready before we woke the kids up to get them going as well. You are responsible for the health, happiness, and overall well-being of a whole group of kids, who all seem determined to get themselves into trouble. For all the energy they have, you need to have that much more just to keep everything and everyone in control.
You cannot go to sleep until all of your kids, who are at a peak state of excitement, do. We would often stay up until 1 or 2 a.m., and then be back up at 6 in the morning to start it all over again. Eating becomes an issue as you face the exact same meals with each successive camp rotation. Ninety percent of the lunches and dinners were chicken. By the time I left the camp, just the smell of chicken was enough to make me sick.
For the first few weeks of camp, we had not managed to work out how to take our breaks. Given the sleep deprivation, malnutrition, physical intensity, stress, damp beds, and bed bugs, it is not surprising that after a month and a half my body gave out. I started feeling very sick. Instead of a fever, though, my body temperature was over a full degree lower than normal. My hip and lower back had started bothering me and no amount of NSAIDs could make it fully go away.
I started avoiding the more physically intensive activities. I couldn't force myself to walk down to the zip line and mountain climbing areas. I traded with other counselors to take over their farm and art sections. And still my situation proceeded to get worse. Finally, just a few days before my birthday, I had to give up. I quit my job and went back home. I hoped that after a few weeks of rest and relaxation I would recover enough for my lower body pain not to bother me anymore.
When I quit my job, the supervisors were upset that I had not brought up my concerns regarding my hip and back pain sooner. They would have been willing to work around my disability, they said. By this point, however, it was clear to me that even if I were excused from all the physically intense activities, the stress and inability to sleep and eat would continue wreaking havoc with my body. What's more, the deli that summer had taught me an important lesson: being open about your disability puts you at risk for losing your job. Better to quit on my own terms than be fired for something I cannot control.
CHAPTER 3Looking for Answers
The few weeks of rest in St. Catharines, before the start of the new semester, helped me regain some of my health, though my leg still ached pretty consistently. Although the scans suggested that any problems were being caused by my hip specifically, the pain often extended throughout my entire leg. Sometimes the focus was the hip, such as when sitting or shifting position. But at other times, it felt as though my femur was about to shatter, and my whole leg seemed to be on fire with agony. Luckily, I had an appointment scheduled with my rheumatologist in late September. I returned to Ottawa at the beginning of September, ready for class and looking forward to getting the help I needed to make the pain go away.
As the days passed, the pain got worse. Imagine that every time you sit down you feel as though your hip is popping out of its joint. That it takes ten minutes for the pain to stop once your joint becomes accustomed to its new position. Then when you stand, it feels as though you are forcing it back into place. This is what it felt like every day, with nearly every movement. I began to wonder if perhaps I had actually injured myself at the camp. With my appointment at the rheumatologist still some days away, and concerned that I would need X-rays, I decided to go to the walk-in clinic.
The moment the doctor I saw heard I had arthritis, she sent me on my way, telling me to take my painkillers and to call my rheumatologist. I was annoyed that she hadn't even bothered to examine my hip, or question why I had chosen to come see her rather than my specialist. Having arthritis doesn't magically prevent me from being injured. In fact, one could argue that impairment to my joints could make me more accident prone.
Disappointed and frustrated over having wasted my time at the clinic, I waited for my upcoming appointment with the specialist. When the time finally came, I told my rheumatologist about the pain I was experiencing. He seemed unconcerned. With the high-intensity summer that I had had, he suggested that I might have somehow sprained my hip. He prescribed me a cane and sent me on my way. I was relieved to find an answer, and I picked up my stylish new cane — black, with foam handle and adjustable height (woo baby!) — at the pharmacy downstairs. I figured that after a few weeks of taking the weight off my leg, I would be back to normal; no big deal. My father, when I called him to get help with purchasing the cane, made a joke about being careful, since "Cain dis-Abeled the world after all."
CHAPTER 4Learned Helplessness
Over the course of the next few weeks, rather than getting better, things got progressively worse. Soon my whole right leg was on fire with never-ending pain. Every step made me feel as though my tibia would shatter beneath me. I swear that I could feel the pressure fractures forming. In the mornings, my body was so stiff that even the lightest pressure caused pain. At night, falling asleep was almost impossible, as I struggled to find the least painful position. When my leg started losing feeling and giving out beneath me, I realized I couldn't keep dismissing my symptoms as just a normal hip sprain. I realized that they indicated something more severe and that I needed to have it checked out.
With the loss of feeling and support in the limb, not to mention the jumps in pain, I wondered about the possibility of a pinched nerve, a blood clot, or something else. It was even suggested that I might have bone tuberculosis. This was somewhat plausible as a relative had been suffering from TB when I last visited family in Poland, and other people in our community were possible "healthy" carriers. I finally decided to go see a doctor to discuss my worries.
(Continues...)
Excerpted from Young, Sick, and Invisible by Ania Bula. Copyright © 2016 Ania Bula. Excerpted by permission of Pitchstone Publishing.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Contents
Introduction,Part 1: Psoriatic Arthritis,
1. An Inauspicious Start,
2. A Buggy Summer,
3. Looking for Answers,
4. Learned Helplessness,
5. Losing Faith,
6. Living with Chronic Pain,
7. Not So Invisible,
8. What Is Normal?,
9. It Continues,
10. Getting Back to Normal?,
11. Breaking Point,
12. On the Right Track,
13. Desperation,
14. Watch Those Hands, Buddy,
15. Woo,
16. It's All Natural,
17. Depression,
18. Faith,
19. Vacation Woes,
20. The Specialist,
Part 2: Crohn's Disease,
21. A Bit of a Pain in the Behind,
22. I Have What?!,
23. Surgery,
24. Food Poisoning,
25. Mixed Messages,
26. Despair and Diagnosis,
27. A New Normal,
28. Hollow,
29. Learning How to Eat,
30. Immunosuppressed,
31. Let's Talk about Vaccines,
32. New Meds,
33. Potty Training,
34. Living with an Invisible Disability,
Part 3: Disability and Social Justice,
35. Identifying as Disabled,
36. What It Really Means to Be Poor and Disabled,
37. Becoming Poor,
38. My Welfare State,
39. Get A Job!,
40. Start a Business,
41. Budget Better,
42. Rags to Riches,
43. Relationships,
44. Sex and Dating,
45. Depression and Doctors,
46. Paging Dr. Feminist,
47. Beyond the Chart,
48. Fat Shaming Hurts,
49. Triggered,
50. Religion and Disability,
51. Worth Less,
Part 4: Medical Marijuana,
52. Herbal Medicine,
53. Are You Afraid of Getting Addicted?,
54. It's My Fetish,
55. So What?,
56. So Are You Afraid of Getting Addicted?,
57. What's Stopping Use,
58. Legalize It,
59. Stoner Guilt,
60. It's Expensive,
Part 5: A Little Friendly Advice,
61. What Not to Do, or How Not to Help,
62. What to Do, or How to Help,
63. What Atheist Groups Can Do,
64. So It Goes,
Acknowledgments,
About the Author,