My lupus story really begins in 2004, despite the fact that I had suffered from other health issues (that may or may not be lupus related) before things went from bad to worse. Things turned sour over Christmas break 2004-2005. I noticed my need for sleep had increased dramatically and I found myself suddenly sleeping all day long. Attributing it to the stress of final exams being over, I didn’t think much of it. During this time, I also developed a UTI that wouldn’t go away. After several rounds of antibiotics, it was still coming back for more. Despite the pills, a couple times I was hospitalized in order to have intravenous antibiotics.
My boyfriend at the time decided he wasn’t a fan of me sleeping so much and told me that because I slept so often, it had made him fall out of love with me. Granted, we had only been together a few months, but as it was the first time I had been in love and my self-esteem was somewhat fragile, this completely crushed me. I had not seen it coming and it set me up for almost a decade of being convinced that my fatigue would be too much for a future partner to handle.
I returned to college that spring, but I was literally a shell of myself. Devastated from my break-up (and even more devastated when I found out he had a new girlfriend a couple weeks later), increasingly fatigued and constantly on antibiotics, I withdrew from most of my friends and family. I spent a lot of time seeing doctors, crying and sleeping. I can safely say that this was one of the most difficult periods of my life: reeling from the pain of a first heartbreak and trying to fix a broken body that just wasn’t having it.
I ended up withdrawing for the semester and went back home, where I spent my time sleeping and seeing doctors. At first, I was told I was depressed because of my history with the illness and my recent break-up. Then, when it was clear there was something more to it (although depression is serious and I don’t want to give off the impression that it isn’t) I was diagnosed with Chronic Fatigue Syndrome, a label that stuck around for a while. During this time, I did research into every possible disease as I found I had more symptoms than Chronic Fatigue seemed to display. I asked that I be tested for a whole host of things after doctors proved to not be too interested in my case and didn’t test beyond the routine lab work to make sure I wasn’t vitamin deficient. Remembering my grandfather’s lupus, I asked to be tested for it and the doctor obliged, telling me I was likely wasting my time. The test for lupus was a simple ANA test, which came back negative, so it was assumed that I didn’t have it and I moved on to attempt to solve the mystery. It should be noted, however, that there is no one test for lupus and doctors diagnose it through a whole host of things including blood work and symptoms. The ANA test is just one part and should not alone diagnose or rule out lupus.
I spent most of the summer of 2005 sleeping in between summer school courses. Once, I slept for a full 24 hours, having fallen asleep on the couch in front of the TV around 2pm and not rousing until the same time the next day. My mouth was constantly dry and I struggled to complete tasks that people take for granted, like going to the grocery store or even getting the mail. Somehow, I earned six college credits that summer, which I honestly don’t know how I did it in the cloud of fatigue.
For people who don’t struggle with fatigue, I find this symptom, which has always been the most debilitating for me, very difficult to explain. Yes, I am aware that everyone is tired, but more than likely, “everyone” is tired from the stresses of everyday life like having a 9-5 job and then picking up the kids and then taking them to flute and soccer practice before frantically putting dinner on the table, helping them with their homework and then finally tucking into bed yourself. Yes, that is tiring, no doubt. But, that is not the same as fatigue and people with fatigue cannot just “get on with it” (a gem of wisdom I’ve been told so many times). There is a huge difference between fatigue and general tiredness. Tiredness is the scenario I just described, where you would love to have a nap, but even if you can’t, you know you’ll be able to slug back some caffeine and make it through to bedtime. Fatigue is when your body is weighed down to the floor and it takes all of your energy to keep your eyes open. As my disease progressed, fatigue also began to mean pain in my joints. Fatigue is when you physically have no other option but to go to sleep. It isn’t something that will simply pass or something “we all feel.” It is all encompassing.
Although I continued to see doctors, I was not given any medication because there is no known treatment for CFS and although I still believed I had something else, it was the only label I had to go on. I simply tried to listen to my body and my fatigue and was able to study abroad in France and graduate with my BA. In the spring of 2007, I took an internship at a Broadway theatre company with the intention of moving to New York City. I was accepted into a graduate program at NYU and looked forward to the next chapter in life, although I think I was still in a bit of denial that I was ill, most likely because a doctor couldn’t really find anything in my blood. At that time, the thought that perhaps I was just lazy and if I put my mind to it, maybe I could get over the fatigue and increasing joint pain I was having.
Moving to New York City was amazing for me. I loved the creative atmosphere, the endless options for live theatre and even better, a large portion of my friends from California had moved there creating a tiny little second family.
During my internship, I increasingly found that work 9-5 was difficult for my body. I began to be tired all of the time, my joints beginning to ache intermittently. This was especially difficult for me as my internship gave me free tickets to tons of Broadway shows and discounts for others, allowing me to spend almost every weekend at the theatre: one of my major loves. Being too tired to go to a job I loved and engage in the activities I loved in the evening was like dangling a carrot in front of a horse and never giving it to him. At that time, I relapsed into anorexia nervosa, something I had struggled with as a teenager.
Without eating, I became sicker and sicker. My liver began to swell and I found myself almost bedbound. I joined an eating disorder support group in New York and gradually had to quit my internship in order to focus more intensely on my therapy. Although doctors still couldn’t see anything in my blood, I still persisted and went to see a Lyme Literate Doctor, or LLD that is apparently able to treat people who have what is called chronic Lyme disease. He took blood samples and said I did not have it, but the cause of my symptoms was a deficiency in vitamins. Obviously, since I was suffering from anorexia nervosa. I went a couple times for infusions and gave myself shots in the arm of vitamins. Despite this, my liver began to swell and I had to quit my internship, spending almost a month in and out of bed.
That summer I checked into an eating disorder clinic where I could only really keep up with the intense all-day therapy regime for about two weeks before feeling my body fall apart again. However, during that time, I learned alternate skills to cope better with my anxiety and unpredictability of my health and I really am grateful for the time I was able to spend in the facility. Since then, I have had problems with major depression, but have not abused food (except for occasional slip ups but nothing long term) in order to cope with my illness.
By 2008, I was in graduate school at NYU and my joints began to feel worse and worse, to the point that I would call my mother in California crying in the middle of the night. She would suggest I go to the ER, but that usually offered little relief besides being told to just take something like Advil. It was then I started seeking out rheumatologists. One told me I had fibromyalgia. In addition to the joint pain, fatigue and constant fevers I was developing, I began to have pain in my eyes as well as rashes on my body that included a raised butterfly rash. Unable to accept it was fibromyalgia (and being sent away again without any treatment), I went back to another rheumatologist while I had a fever and severe joint pain. This time, they finally found markers in my blood that pointed to a connective tissue disorder. I was diagnosed with Undifferentiated Connective Tissue Disorder and put on my first round of Plaquenil.
I finished my MA in the spring of 2009 and my health started to feel relatively stable. Itching to continue exploring the world after my taste studying abroad in France, I signed up to teach English in Budapest, Hungary. I didn’t want this illness to define me and I wanted to trudge forward and continue to experience life despite it.
Budapest was an amazing and horrible experience all at once. I learned so much about myself, about the world, about Hungary, about my area of study (the Holocaust) and my Eastern European roots. I could write a whole other story on Hungarian culture and the shock and displacement an American feels there (especially a Jew), but it would totally undermine the rest of this story (which is already getting pretty long, so congrats if you’ve made it this far guys…keep going and grab a snack!). Maybe I will write about Hungary in my blog one day, because it is truly a unique experience most Americans do not get.
At any rate, of course, lupus (although I had not yet officially been diagnosed) reared its ugly head and wanted to make sure I knew it was there. I began feeling extremely ill and came down with bronchitis which they were worried would develop into pneumonia. Luckily it didn’t, but it did lead to about four bouts of tonsillitis before I finally decided to make my way back to the US, but not before experiencing the Hungarian healthcare system.
A couple of times in Hungary, I was taken to a private hospital that mostly foreigners visited in Budapest. For the most part, it was clean and everyone spoke English. However, when I got my chest X-rays, I wasn’t given anything to cover up with. When I covered my breasts in embarrassment, I was asked if I was cold. When I told them I just wasn’t used to baring my breasts during doctor’s appointments, they told me this was most definitely the norm in Hungary. The doctor I saw there was especially nice, but she did let me in on the fact that they had stopped reusing needles (although disinfecting them between patients) just a few years ago (this was in 2009, mind you). She also tested my blood by putting it into a machine and whirling it around by hand.
Later on when I got sicker before Christmas, the main rheumatology department in Budapest was unable to take me in for an exam, so the Hungarian woman that brought foreign teachers in to Hungarian schools took me to a hospital in her car to a little town outside of Budapest. I think it was called Gyal, but I can’t be positive. Anyway, it was much different than I was used to in the US and the doctor didn’t speak a lick of English. Everything had to be translated back and forth, which made for a rather frustrating experience. I was already used to doctors not really listening to me, but this took it to a whole new level! From what I could tell, the doctor was very nice and examined me thoroughly telling me the disease was active.
I was taken to a different area of the hospital where an ENT was to examine my tonsils. The ENT exam room consisted of what looked like a Soviet style torture chair in the middle of a light green room. A female doctor with a lamp taped to her head then came at me with a metal tongue depressor yelling at me to relax in Hungarian. Although most Americans or English people don’t really have a concept of Hungarian (it isn’t related to any of the other languages like Polish or Russian that inhabit the languages around it), it really isn’t a language that sounds pleasant when being yelled at you. When finished, the doctor placed the tongue depressor in a disinfectant with other used instruments, presumably to use on a new patient.
I do not want to misrepresent Hungary or its medical system and will say that this is just my experience. My standards as a westerner are very different and what is considered shocking to us may be everyday to someone else. Hospitals in bigger cities may also be much different and cleaner and I do not want anyone reading this article to come away feeling offended. I have Eastern European heritage, which I am incredibly proud of, so in no way am I trying to insult the people of that region or their intelligence or way of life.
In 2010, I moved back to the United States. After having my tonsils taken out, I moved back to New York with a friend from California where I made my living as a freelance writer. Gradually, however, my health began to decline and I ended up spending about six weeks in bed. I started seeing a doctor at Hospital for Special Surgery (Dr. Jessica Berman to be exact…she is a saint!). I was rendered unable to work and went to see her for steroid infusions a couple of times a week. It was there that she read my blood work and diagnosed me with lupus; she told me mine was a very odd form because I developed symptoms before it showed up in my blood (usually the other way around) and my ANA is negative when the lupus is inactive.
Dr. Berman put me on Imuran, a very strong drug that a lot of doctors were against, but it was very successful in cutting down my fatigue and getting me back on track. Unfortunately, I had to move back in with my parents because although I was feeling better, I was still not able to work enough to keep up with my rent. I felt terrible letting down the friend I had moved in with, but really there was nothing else I could do.
Since then, my disease has mainly been under control with minor flares and setbacks here and there. I have learned to listen to my body and make peace with the fact that I may never do as much as everyone else and that’s okay. Although I still am frequently tired and struggle controlling bladder and kidney infections that occur every couple of years, generally I am doing much better. I still sleep a lot and still experience pain (and sometimes spend entire days in bed), but I am slowly building a career around lupus and not letting it define me. I have had to quit a couple of jobs as I’ve navigated my ability to perform, but this has further inspired me to develop a career of my own where I can be my own boss and not worry about letting other people down.
In 2011, I received a full scholarship to study Holocaust and Genocide Studies at the University of Amsterdam and I spent a year immersed in one of the world’s most beautiful cities. In 2012, I enrolled in a PhD program at the University of Leicester in the UK. I spent the summer of 2013 in Paris studying the Holocaust (although it was marred a bit by a repeat bladder infection that wiped me out for a lot of the time I was there).
In 2013, I moved to Milton Keynes in the UK where I met my current partner and live in a wonderful house nestled on a canal. We happily live with two other people, my dog and our landlord’s canine companion. I maintain a blog that is growing in popularity, just started a YouTube channel, self-published a novel (that is doing much better than I ever hoped) and have another book on the horizon next month. I also teach about my specialty (Anne Frank) to students in the United States via the magic of the Internet and spend my Tuesday nights Irish step dancing, something I once never thought I’d be able to do again. Praying all goes smoothly, I will receive my PhD in History from the University of Leicester in the Fall of 2015.
The end of this story is not a happy ending, mostly because it isn’t an ending. Lupus will always be a part of my life. I will always have pain, I will always struggle with fatigue, I will always have days when I am terribly upset at the things I cannot do. There will always be plans I have to cancel because I am too tired, a dog that will go unwalked every now and then and a room that won’t get cleaned when it needs to be. But that’s the very nature of lupus. You must learn to live with it, in spite of it, and let everything else about you define you. Although lupus is a major aspect of the life of anyone with it, in order to live a full and happy life, it must be but one of the many aspects that define you, not the thing that does.
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