Wednesday, April 7, 2010

Part 2: Living with Lupus, Seeking Well-Endowed Healthcare

As my fingers became more rigid, I lost the ability to open jars and push the dispenser button for the laundry detergent. As my toes became more rigid, I began shuffling around the house in slippers, going to work in sneakers. I applied for, and was denied, Medi-Cal because I didn’t have children. I knew I was going to be denied for that very reason, but I had to apply anyway in order to apply for county assistance. I was denied that, too, on the basis that my husband was a full-time, unemployed student; that, and we both owned cars with a combined worth of $14,000. If I was to get medical attention, I needed to sell our cars, and my husband needed to quit school and get a job.

The process of application and denial was degrading and time-consuming. For the first time, I experienced poverty as a class distinction, rather than as a college-student’s income level. In my attempt to get medical care, I waited in lines that snaked around large buildings, I waited in rooms filled with people who stared at me as if I were from another planet, I waited for hours only to be told: You’re too poor to afford health insurance; you’re not eligible for assistance—sorry. All I kept saying to anyone who would listen was, I’m a human being! I don’t deserve to be treated like this.

I applied for private health insurance, for which my in-laws paid high premiums. More blood was drawn. More tests were run. I was officially diagnosed with lupus.

I hated my body. I felt betrayed by it. I had no control over what was happening to me. Positive thinking had no effect. My doctor had no miracle drug for me, only more Motrin. My arthritis became less severe, but I was exhausted and my thoughts were jumbled. My boss was having none of it. I was assigned fewer and fewer classes. As my financial situation worsened, my stress increased, leading to worsening symptoms.

I gave up teaching in favor of a full-time job with benefits, one that required being on my feet eight hours a day and working with my hands. Time passed, and I became despondent. I felt that I was a failure. I felt like I brought nothing but misery into the lives of my husband, mother, and friends. I became fixated with my gas oven. The day came when I realized that I no longer feared death. I began researching women in psychiatric hospitals for an article for Insurgents’ Ink, and on a whim, took an online depression test. An orange box popped up, imploring me to call a suicide hotline number.

I cried. I hyperventilated. I paced the house. I read the words: Remember, suicidal thoughts will pass, but suicide is forever. I breathed. I waited for my husband to come home. I told him everything. I called my doctor. Drugs, therapy, yoga—it’s working pretty marvelously, actually. The only side-effect has been vivid dreams: Sometimes my husband accidentally leaves the gas on after cooking, and we blissfully drift off and never wake up. Other times I’m sitting in a huge Catholic church and am asked by the priest to take the collection plate around to each individual person, and they look at me in a creepy, cultish way as they place their money in the plate. Still other times I’m relaxing in a tub filled with blood.

Although I’m no good at interpreting dreams, I can say that this experience has changed me. I used to feel secure in the fact that I am an American. I assumed that laws existed that protected me from falling through the cracks if I ever needed assistance. But when I actually fell through the cracks, I lost my sense of security. I wasn’t a lucky American citizen: I was expendable.

I still have moments when I feel isolated, discarded. And I have a lot of questions, like: Why is the only treatment for lupus a malaria drug developed in the 1960s that can cause color blindness? Why is the information on lupus vague and variable depending on the source? Will my symptoms get worse? Will they get better?

Each doctor and specialist seems to have different answers, or none at all. There’s just not a lot of research currently being done. But the act of writing has helped me to counter my feelings of powerlessness and frustration, and I hope that my story can help others in some way.

The Lupus Foundation of America website has been a great source of information:

There are also a number of books on the subject, including Flannery O'Connor's posthumously published collection of letters to a friend in which she writes about her own experience with lupus.


  1. Wow....I can totally relate to most of this. Fortunately, as a single mom with 5 kids, I was able to get medi-care and SSI...the dreams, I have them often. My Dr. said they may be small seizures when they are so vivid..I have actually walked around in my sleep and dreamed about it. My prayers go out to you!!!!!!!!!

  2. Thank you for your comment! It makes me feel better to know that I'm not the only one who's had these experiences. I hope you're managing ok now (between lupus and 5 kids!). Thanks again for sharing your story--I'll have to look into the vivid dream/small seizure connection.

  3. I have reflex sympathetic dystrophy, so I can certainly relate to most of your experience. I'm sorry anyone has to go through this.
    Thank you, Bonnie, for sharing the information about vivid dreaming. I will be asking my pain management specialists about this next week.

    Today is my first time visiting this site, and I'm enjoying!