That aside… it’s time for the post on what’s wrong with me. It’s not going to be engrossing reportage, a new theory on how the medical industry should be structured, or a guidebook to curing any of these problems. It’s just going to be a personal narrative, written just as I experienced all of this crap. As a warning, it’s not going to start out on a hopeful note, but I promise it has an uplifting ending.
It’s also not going to be a sexy story. That’s not the point. Unlike so much writing and social networking on the internet, I’m not trying to impress you. I’m trying to help those who are sick to feel a little bit less alone, and help those who are able-bodied understand us a bit better. It’s a coming out story.
Hello, I’m consumerculturecritic, and I’m a chronically ill radical professional.
*******
I have been a long-time sufferer of asthma, severe seasonal allergies, numerous food allergies, irritable bowel syndrome, gastro-esophageal reflux disorder (GERD/acid indigestion), eczema, and arthritis. In other words, I have a lot of auto-immune disorders all piled up on each other. The degree to which these disorders have complicated my life has ebbed and flowed with time. There have been times when I was on the brink of death, and there have been (occasional) months where I was hardly held back at all. I’m a master at covering all of this up, so even most of my friends don’t know this about me.
In addition to the disorders, I’ve broken six bones, and had something or other go wrong with almost every part of my body. One of the bones I broke is still not right. I had chronic back problems throughout high school that left me in a stunning amount of pain, and I’ve been in a few car accidents that gave me whiplash. I broke my wrist and had to live without the use of one forearm/hand for a couple months. It was unfortunately while I was writing an undergraduate thesis, so I had to dictate all my notes and writing to the computer. There’s something off with my connective tissue and I’ve done a lot of damage to my body by playing sports and living in general. Put simply, I’ve experienced a lot of different kinds of disability that came and went, as well as dealt with chronic disorders. On the flip side, though, I never got a cold or flu until I was about 15, and only threw up on four occasions before I turned 18. Go figure. Maybe I’m like a SuperWoman of immunity… my body is so strong it constantly attacks itself.
It all started when I was born, I guess. I was a colicky, screamy, cough-y baby. I had ear infections from the get-go. I apparently had constant indigestion and was never happy. At the time (the early 80s) doctors didn’t realize that such symptoms could be warning signs of later health problems, and urged my mother “not to worry.”
When I started talking, I began the process of telling my parents just what was wrong with me. They immediately started having me treated for ear infections, which was a process that continued until about the age of 8. I was constantly on antibiotics and I had the “tube surgery” (and also had a stuck tube forcefully removed while fully conscious). None of this ever really helped; it just kept the infections from getting out of hand. I was nearly blind, and got glasses around the age of three. It’s kind of crazy to look back and realize that I was a three year old no fewer than three doctors.
I started developing skin problems around that time too. I got eczema on my arms, legs, and some other sort of psoriasis on my scalp. My most vivid memory of these problems was from the age of 6. Despite the fact that I had really bad skin problems my mom still made me wear white stockings to church. And sure enough, they got glued to my skin in the small spots with the skin problems. We had to cut them off and soak off the last bits.
Other than this, I had a pretty healthy childhood. As mentioned above, I was all but free from childhood illnesses, and only missed three days of school from grades K-12 (my mom spent a lot of time scheduling doctors’ appointments on Labor Day and MLK). These couple problems really weren’t that bad, and no one even knew about them. The kids had plenty of other reasons to pick on me, so illness didn’t play a major factor in my social life until later. The only really visible problems were when I broke my collar bone at 3 (same day as the ear tube surgery… keep kids off drugs!), slammed my finger in a car door at 6, and punched a wall during a fight at 9. That, and I was really small. I weighed 54 pounds at age 10. And 11. And 12.
In middle school, I started getting a little worse. Acid reflux came at the age of 10, and by middle school I mostly ate carbs, cheese, and meat because they hurt my stomach the least (the idea of eating vegetables hadn’t occurred to me yet). I got a sports injury at the age of 13 and it didn’t heal quite right. They said I was starting to get arthritis, and would probably have full blown arthritis by 18. We moved from the North to the South in middle school, and I had “real” allergies for the first time in my life. I felt stuffy, sick, and sluggish for months out of the year. I got bronchitis and it lasted for a month, in part because we weren’t fully insured and I couldn’t go to a doctor yet. My lungs weren’t the same for a long time after that. Soon, I wasn’t able to run any more. Not that I could ever run very much, or very fast, but at that point running became more or less impossible.
High school was medically one of the worst times of my life. I weighed 64 pounds for the first two years, and they put me on 3,000-5,000 calories a day. It didn’t help. My seasonal allergies were intolerable, and during the fall and spring I mostly passed out after school. The back aches came and were so bad that I’d have to roll around on the floor (this was before yoga) for about an hour before the pain went away enough for me to sleep. I had bad sinus headaches; in retrospect, I guess it was like a sinus infection for years. I had a cough and my chest felt tight all the time. My lung function was abysmal, and I started seeing a pulmonary doctor as often as monthly. My lungs looked like bone on the X-rays, and no one knew why. I went from never being sick to getting plenty of colds and a couple rounds with the flu (which is really devastating for asthmatics).
The sort of exemplary moment in this time was something that happened at band camp. One summer at band camp they made us run and stand at attention when it was over 100 degrees outside. I told our band director, who knew I was asthmatic, that I was feeling really, really bad, and he just made me run harder. I was having a really severe attack, the first of my life. We went indoors for lunch and afternoon practice, and everyone could tell that something was wrong. I couldn’t play my instrument at all, and I got a little grey/purplish in the skin. As is common with asthmatics, I didn’t really know what was going on or how to properly advocate for my health since I wasn’t getting enough oxygen to my brain. Finally, they sent me home. Unfortunately, band camp was 2.5 hours away from home, so I had to wait that long for my parents to get there, and then that long to be back in one of the leading medical cities on the east coast. In that time, I took my inhaler 4 times an hour instead of once every four hours, and I was sick enough that they made me drink several liters of Coke and eat a bunch of chocolate, since caffeine is a bronchodilator.
By the time I got home I’d stabilized, which I guess isn’t too surprising since I had far in excess of emergency doses of asthma meds. My doctor had called in a prescription for prednisone, an ingested steroid, and I was on it for several days (a week? Two?). Suffice it to say, I don’t remember much. I spent an entire week passed out. A whole goddamn week. I don’t mean “mostly passed out,” I mean I only got up to pee and apparently to take in a few calories (I think in the form of Coke, once again), and I don’t even remember that. I slept the whole time right where I landed when I arrived home from camp- on the floor right inside our living room.
That was the end of marching band forever. And sports for about a year, save for climbing. I tried to keep hiking and camping, but my lungs couldn’t handle it. A brisk walk took the wind out of me like an old lady.
The doctors were talking about a bronchoscopy with lung biopsy. I’d grown weary of the doctors and the medical treatment, which seemed to be a pain in the ass with no pay-off, so I refused this treatment. I technically didn’t have the legal ability to refuse treatment, but amazingly my mom let me. I can’t really believe that she did it, and out of scientific curiosity I still have some regret about not letting them cut out a tiny piece of my calcified lungs.
The next summer I had one of my more positive turning points. I got to go to MATH AND SCIENCE camp. Yes, it got nerdier than band camp. That’s what happens when you’re not healthy enough to play the xylophone on a warm day. Regardless… I had a GREAT time at math and science camp. Not only was it the first time that I started to feel healthy for a long time, it was one of the first times I’d felt happy in years. I met friends who have been with me ever since.
I realize now that I got better at science camp because I was in control of my own diet. I still ate a ton, because that’s what you do when you’re a 64 lb high school girl, but I got to pick whatever I wanted to eat from a college cafeteria. It was like a blessing from heaven, after having my calories counted and my eating constantly monitored for two full years. Eating became my private pleasure, my act of control over my life, and it was totally fabulous. My science camp diet was coincidentally very low in milk, which I later found out was my major food allergen and a trigger to my allergies and asthma. But we’re not there yet…
I went back to high school much healthier and 10 pounds heavier after 1 month of science camp. I got a used Buick LeSabre for my 16th birthday and used it to continue my search for healthy and delicious foods. I started to eat Mexican food and vegetables. I was pretty OK for the last two years of high school, and ultimately put on 60 pounds in those years, which finally brought me up to a normal weight.
My first year of college hit me hard, though. I lived in an antiquated building at UNC, and I think that wasn’t good for my asthma. I caught every respiratory illness going around, and had sinus infections all the time. They started putting me on antibiotics for sinus problems, and some months I actually went through four courses of antibiotics in one month! The antibiotics wrecked havoc on my body, and I felt weak and sickly most of the time. I started out the year as a starter on the varsity fencing team, but ended the year as the only team member who didn’t letter. The problem was that I couldn’t cross-train. I was still pretty good at fencing, but I couldn’t run and participate in other team cross-training activities, and missed practices and one meet due to physical illness. The other team members, who were selected as elite all-around athletes, were very hard on me and did not accept my limits and disabilities. I was constantly harassed and called out as a wuss for not being able to run 4 miles (which is so necessary for fencing…). When we fenced against Duke, and one of their teammates had to forfeit a match due to an asthma attack, our team actually cheered. While I realized their reactions were shameful and unsportsmanlike, it was still helped push me into the sick person closet. After that kind of treatment, I really didn’t want anyone to know how sick I was. I treated my health issues like military secrets, and revealed them on a need-to-know basis.
Around this time I also developed irritable bowel syndrome. For some reason, lots of foods ran right through my body. The doctors couldn’t figure out the cause, and just gave me some mild anti-diarrheal medication to take before eating. For years I would only eat the least-offensive foods like salads when out with friends or partners, for fear of what other foods would do to my body. I told no one about this problem and consequently had to find lots of other excuses for my strange behaviors. Those who knew me when I was 64 lbs. were afraid that I’d been anorexic all along, so the scrutiny upon what I ate grew. My boyfriend’s parents were the worst, always criticizing what I ate, what I didn’t eat, and how little I ate. They thought my tastes and manners were really unrefined, but in reality most of the stuff they cooked me was eating holes in my intestines.
There weren’t many other major medical problems in college. For the most part, I just hovered at this not-very-well state for the whole time. This was also the start of the six years where I would get sick twice a year and be completely knocked out for a week or two each time. I’d get some sort of respiratory virus and be on bedrest until I got better, which is socially awkward to say the least. At least one of these incidents was attributable to Coxsackie virus B, which doesn’t make most people sick but basically had the effect of whacking me over the head with a lead pipe. After getting Coxsackie, I started experiencing inflammation of the sternum other times when I got sick, something that still happens to this day.
After college, I ran straight to a PhD program. Grad school was a pretty perfect place for a sickly person. I could be on bedrest for a month at a time and no one had to know, so long as I dragged myself out of the house a couple times a week for class. And that actually ended up happening.
One summer I moved into a house that was built shortly after the Civil War ended. I immediately became really sick and could do little else other than lay in bed for two weeks. I had really severe headaches and felt like I’d been punched in the back of the head. My lungs were totaled; I had emergency-level asthma attacks daily, but only had the energy to go to urgent care or the hospital for a breathing treatment every other day. I chalked it up to one of my summer asthma maladies- my lungs frequently couldn’t handle the high humidity, allergens, ozone, and reanimation of the Coxsackie B so wasn’t uncommon for me to be out of commission for a week or two each summer.
But then I realized what it was. I had dragged myself out of the house, still in my dreamy, groggy, confused, sick state, to try to study. And the headache went away. I thought hard (as hard as you can when you’re that sick) and I realized that each time I escaped the house, I felt better. I determined that my sickness was most likely due to mold, and tried to figure out where to go from there. It’s a really difficult situation, being allergic to one’s residence. I cried my eyes out when I figured out that I had to move immediately, not just because it is a pain in the ass to move in the June heat as an asthmatic, but also because I knew it would be incredibly difficult to find affordable mold-free accommodations in the college town where I lived.
As fucking horrible as that whole experience was, I feel like it was the beginning of my path to regaining some control over my health. I was forced to finally consider the behavioral and environmental factors that were making me sick. As difficult as it was to work around, I realized that I could be healthier with enough work. I moved to a place that luckily had enough mold-inhibiting factors (old plaster walls, a decent roof, top floor so no leaks from bathrooms above) that I could get by. I studied what it would take to find another such place when the time came.
The most important step was getting blood work done for my allergies. I was incredibly, incredibly lucky to have family working in the medical field, and realize that’s an advantage that most people don’t have. That’s part of the reason I feel like I have to write this stuff down. It took so much effort, so many doctors, and a lot of money to find out what was wrong with me, but in the process I’ve learned a lot that could help others.
What they found out about my allergies shocked me. I tested positive for my usual suspects- trees and ragweed. I didn’t really test positive for much else, not even mold. But the very skilled, caring allergist who analyzed my tests let me know that many people with my allergies cross-react to legumes. At the time I was a vegetarian, and I didn’t want to hear that hummus, bean burritos, locally produced tempeh, and TVP fake-chicken pie could have played a part in my downfall. But then I started to experiment with my diet. I would eat mostly safe foods and then would eat mega-doses of soy. I went to whole foods and ate a whole bowl of Thai style tofu. My face broke out in hives and my hands swelled. I’d been experiencing these symptoms on and off for a couple years, but had never connected it with the food I ate. Next I tried eating the vegan plate at my favorite Mexican restaurant, and once again my hands swelled, I got hives, I got acid reflux, and felt a bit pukey. I had some irritable bowel symptoms too (i.e. the legumes didn’t stay with me long). The same went for all legumes except green beans, which I can thankfully still eat.
I tried to stay a vegetarian for about two or three months after my diagnosis. I tried to live off of cheese and whey protein shakes, but still felt sick all of the time. My sinus problems continued that year, and once again I was on the antibiotic merry-go-round. Summer came and I took an internship back home with my family and with better access to hypoallergenic foods. Ultimately, I made the difficult decision to leave grad school for awhile to try to get healthier, to learn to live with my mold sensitivity, and perhaps most importantly to pay off the goddamn bills that piled up from doctor’s visits, prescriptions, and special food.
It turned out to be an incredibly good decision, but for some pretty painful reasons. I remained sick, and very sensitive to mold. I spent a few months living at home as I tried to get my finances in order, and then started looking for low-mold housing. Everything I saw was expensive, and it was further compounded when I didn’t get the job I wanted where I was working. I was unemployed for a couple weeks, and marginally employed for the next 4-6, which will beat the hell out of most people’s financial stability. I was then completely unable to find affordable housing and food to stay healthy, and had to continue rotating between my parents’ house, my partner’s house, and my friends’ houses. Then I burned my hand cooking and had to miss some work without pay, and also incurred some more significant medical bills. It would be nearly half a year into my new job before I could afford to search for a place to live.
Once I consistently had enough money for a deposit and first month’s rent, I started looking for apartments. One of the first I considered seemed perfect: it was with an old friend in a co-operative apartment complex. The place had been painted with asthma-safe low-VOC paint, and my friend had some breathing problems herself to look out for. I asked if she knew, offhand, of any hazards to asthmatics and she said she couldn’t think of any.
I moved in and immediately started getting sick. It was all of the same stuff I’d been through again. I was so crushed I couldn’t handle it at first, and took a couple weeks to see if I could stand it or find a way around it, but sure enough I couldn’t. The next place I tried was a cooperative living house, but it was also mold-infested. I tried a third place, all within a month, and that too fell through. I was causing a lot of trouble for friends who were looking for stable roommates, and I started to wonder if I was becoming just too much of a liability to get by. I wondered if I should consider doing something drastic like killing myself or working for a big evil pharmaceutical corporation that would pay me beaucoup bucks so that I could live somewhere really fancy and clean. I didn’t have to entertain either of those options, thankfully.
Once I got on my feet again, and after the financial devastation of multiple failed apartment hunts (and several months rent and deposits lost to places I never got to live in), I started the hunt again. I realized that I had to actually try sleeping in apartments to see if I could stand it there before moving in. While this is one of the most bizarre things you can ask people as a stranger and random potential roommate found on the internet, I found people to be incredibly supportive. Every person I asked accommodated this request. My life became like a massive experiment. I had to be very attentive to my symptoms, trying to feel if my ears popped when I entered a house, assessing the degree to which my sinuses felt stuffed after entering a room, taking my lung function measurements covertly in the bathrooms.
But still, I couldn’t find any place where I didn’t feel sick in the morning. I felt like I hit rock bottom and got really depressed. I felt so horrible and shitty every day that I didn’t really want to wake up or keep living. It’s incredibly hard to keep dragging yourself to work when you feel that bad, but I knew I had to. I had lots of responsibilities and worked in a competitive atmosphere, which I generally liked but which made sick times total hell. I felt like I could have found a place months sooner, if only I could have taken more time off to search for an apartment, but I felt like the search took up so much time that a day off here and there wouldn’t make such a difference anyway. Also, I wasn’t sure if I would get super sick again, and need to take my full vacation time in sick time someday, so I hoarded every vacation day. I spent most of my evenings and my weekends searching craigslist and meeting new places. I had to spend as much time as possible at every place, so I felt like I was always waiting to figure out if I would be ok.
In December, I finally found a place that was OK. It was a full 17 months after I left grad school, and 7 months into my full-time search. I felt a little sick when I got up in the morning, but felt sort of obligated to go ahead and take the place that was “good enough.” While the other roommates were around, I searched the attic, crawlspace, walls, and closets for signs of mold and found none, so I wasn’t sure what would be making me sick. It was a mysteriously new house in Old West Durham, and even though it made me a little sick, I figured it was better than nothing.
The first three months or so seemed shaky. The seventeen months of homelessness made me feel vulnerable and insecure everywhere, and I wasn’t apt to trust any house. I was still feeling stuffy and sick in the winter, so I was worried about what the summer would do to me.
Soon, though, the allergies became an afterthought. My digestive problems got incredibly bad, and I was suddenly feeling the sickest I’d felt in my life. Almost no food stayed with me. I reduced my food sources down to bread, cheese, tomatoes, and meat. I figured surely none of those could be the culprit, and so I had no idea what could be wrong with me. Months after reaching the mental rock bottom, I hit a medical rock bottom, and I decided it was time to call an acupuncturist. I had nothing left to lose.
I didn’t expect acupuncture and Chinese medicine to work, but these two systems ended up completely saving my life. As the child of Western medical professionals, and a hardcore believer in traditional western scientist, I was skeptical. I wanted to see medical studies in JAMA. Everything I read seemed tentative- like acupuncture “may” help allergies/asthma/arthritis/acid reflux/etc.
But I started going every three weeks, and sure enough I got better. My acupuncturist specializes in nutrition, which I thought wasn’t a problem for me. I felt like maybe they put me with the wrong person, since I was already on a hypoallergenic diet. The acupuncturist went through my diet and told me that all the milk and wheat were undoubtedly creating lots of phlegm and auto-immune reactions throughout my body, and urged me to quit them immediately. I was dubious, but willing to try anything. I gave up milk and wheat for two weeks, which was hell given all of my other allergies. The list of foods that were OK was incredibly short.
But then I got better. A
All in all, I made an amazing recovery, and am in a good place for now. I wouldn’t say I’m cured, but I’m stable and better managed than I ever have been. It still takes a lot of work, from continued acupuncture and allergy shots to preparing almost all of my own food (it’s hard to find no legume, no dairy, no eggplant, no squash, no citrus, no pineapple, healthy low carb take-out), I still get knocked down harder than others when colds come to town, although my seasonal allergies are actually becoming less severe than those of my peers. Ultimately, I guess I now agree with the cheesy adage that “health is a journey of discovery,” and want to encourage everyone out there to find what it takes to make your life worth living. And I strongly encourage people to consider alternative remedies when traditional medicine fails you. I’m so grateful to have found a system of healing that understands what is wrong with me and offers solutions I can live with. I appreciate not having to get everything from pharmaceutical companies and not having to wrangle with insurance companies. While my insurance doesn’t cover acupuncture, I’m actually still paying much less to keep myself together than I have in many years.
It took me a long time to even acknowledge that I was sickly enough to tell people or to write things about it. In some ways, I still feel like it’s self-indulgent to be writing this when so many people are sicker. But then I think to all the times when I told healthy people about all the crap I’ve had to deal with, and the shocked looks on their faces. It was like I’d told them I was from Mars. To stay healthy, I’ve had to adopt a diet and lifestyle that’s vastly different from that of my radical friends but also that of my colleagues, parents, and other more “normal” people I know. The process of coming out as sickly has made it very clear that mine is not a normal life, but it has also taught me that being sickly can provide me with insights that others don’t have. Now that I’m “out” I’m free to turn my attention to what it means to be sickly, how sickness and politics intersect, and paths to wellness. I hope that someday it brings someone else peace of mind. It already has for me.
So that’s the way in which I’m sick. In future posts, I’ll deal more with how this interacted with social situations and radical politics, but I figured this was more than enough for one post!
Posts
No comments:
Post a Comment