faustmanlab.org
pubmed.org faustman dl
the ny times is full of fluff and since you have skin the game your thoughts and actions with respect to a simple and effective process for those with lupus and autoimmune diseases lsted in the claims of faustman's patents would be useful
please respond here
see also pubmed.org ristori + bcg
google denise l faustman
USE YOUR TALENTS FOR USEFUL ENDEAVORS?
“Should we just get married?” Chris asked.
“O.K.,” I said, then passed out from exhaustion.
I didn’t know what was wrong with me; my body felt like it was shutting down. I needed to go to the hospital, but as a struggling actor who took on part-time jobs to pay the bills, I had no health insurance.
Chris and I had been happy together for three years living in our separate New York City apartments. Neither of us was eager to get married. He was divorced and not ready to rush into anything. I wanted to be with someone I loved but thought of myself as way too progressive for such a conventional arrangement.
I was cynical about love, or perhaps cynical about what marriage could do to love. My childhood memories of my parents’ marriage haunted me. When I was 5, my mother married my stepfather four months after meeting him, not realizing how difficult it would be to merge our vastly different families.
Both of them had lost their first spouses to unexpected illnesses but had approached single-parenthood from opposite perspectives. Basically, she became strict and he became lax, which meant combining our families was like “Leave It to Beaver” meets “Shameless.”
They stayed married, but much of my childhood was a painful mess that convinced me there was no such thing as love, only a temporary, delusional euphoria.
But here I was, defying my convictions and accepting a proposal of love (and health benefits). My illness had sneaked up on me gradually. I didn’t recognize the gravity of the situation until things got bad one Sunday night at Chris’s parents’ house.
While sitting at the dinner table, I became ridiculously cold and didn’t even have the strength to keep sitting up. “I’m getting the flu,” I said. “Got to lie down.”
Buried under three blankets on the couch, I was still shivering.
Chris’s father joined me in the den. “That’s no flu,” he said. “You have to go to the doctor.”
I procrastinated for two days, then called my internist friend in Reno, Nev. I described my symptoms, including the bizarre rash on my face and newly swollen ankles. He ordered me to go to the emergency room.
“Do I have to?” My capacity for denial was astonishing.
“There might be something seriously wrong with your kidneys,” he said. “Go.”
I tried not to panic as I spent the next two days exploring options for health insurance. Freelancers Union insurance turned out to be too expensive, and declaring bankruptcy seemed like courting disaster. I was freaking out just as much about money as I was about the idea of dying.
That’s when Chris asked me to marry him. It wasn’t what most people would consider a dream proposal, but he was doing what he could because he loved me and wanted to save my life. What’s more romantic than that?
I worried I might be using him because, although I loved him very much, I didn’t believe in marriage. I didn’t see how a piece of paper would change our relationship, other than we’d be living in one small apartment instead of two (though of course we could do that without marrying).
In any case, I didn’t have the capacity to think about it right then. I tried to assure myself it wasn’t a big deal, but I knew there were both tangible and intangible differences.
Chris called in sick Monday morning, then asked his human resources department how long it would take for his health insurance to go into effect for a new spouse. The answer: Immediately!
He asked his best friend, Frank, to be our witness at city hall in a few hours. A cautious man, Frank said, “Uh, let’s wait a minute and think this through ——”
Chris hung up on him.
I called my actor friend Rachel, who was overjoyed to help. Next, Chris headed to his place to get the required copy of his divorce papers. He took the subway downtown and walked across the Brooklyn Bridge to call his therapist for support. Parental consultation would have been too complicated on all fronts, so we skipped it, deciding we would suffer the consequences of their hurt feelings later.
I put on my nicest jeans, my favorite Macy’s black lace top with embroidered pink and red flowers, and pulled the sides of my hair back. I lacked the strength to make a real effort, but I didn’t want to look like a total slob at my own wedding.
Chris, Rachel and I all converged on the city hall steps in Lower Manhattan, the ones they always show on “Law & Order.” Rachel gave us the plastic toy rings she had gotten from a supermarket vending machine. She and Chris half-carried me to two buildings to take care of paperwork as the late afternoon cutoff time quickly approached and then, just barely, passed. Luckily, Rachel, who knows how to flirt, worked her magic on the clerk, and he pushed through our paperwork.
He sent us to a third building for the ceremony. The dank municipal room looked like it was frozen in the 1960s. We stood in a long line between what we guessed was a mail-order bride and her groom and a knocked-up teenager with her 25-year-old, greasy-haired boyfriend.
Our judge vaguely resembled Judge Judy. As she spoke, Chris held me up on one side and Rachel held me up on the other. The whole thing lasted about five minutes.
“Congratulations,” our judge said. Then she shouted, “Next”
Rachel hailed a cab for herself and me, while Chris rushed to his office to put me on his insurance. He called as we were stuck in traffic to find out which hospital we were going to and met us in time for my admission processing.
Over the next five days I spent there, a slew of specialists concluded that I had lupus, an autoimmune disease that causes the body to attack its internal organs. I had been on the verge of kidney failure and could have died. For many, finding out they have lupus is a long and mysterious path, because there is often no definitive diagnosis. But I was “lucky” — an unmistakable case with every clear-cut symptom.
Chris was a superhero during our first week of marriage, which I spent in the hospital. He would go to his job, then to my apartment (if I needed something), then to the hospital, where he would sometimes stay all night. Then he’d do it all again the next day.
Our fifth day of marriage was Halloween, my favorite holiday, and Chris showed up with punk rocker wigs and Mardi Gras beads. I was released that night, and we wore our costumes out of the hospital, onto the street and into a diner, where I wolfed down real food for the first time in a week. Thus began my adventures as a lupus warrior and married person.
Nine years later, I have had a spinal tap, a kidney biopsy and countless platelet injections. I have taken enough medications to kill a horse. I have seen my doctors every six to 12 weeks without fail, completely changed my diet and lifestyle, and slept more than I thought humanly possible. It took me years to recover from that initial flare, but I have been fortunate enough to experience two periods of extended remission, the second of which I’m in right now.
Chris and I are still married and live in a studio apartment with our bichon frisé, Willie. We haven’t wanted to kill each other a single time. (Well, maybe once, but when you or your spouse has almost died, you’re less likely to be bothered by the small stuff.)
After my immediate health crisis passed, I was able to look back and appreciate how much Chris had stepped up to take care of me. His passive side disappeared the moment he proposed. I had never seen him take charge like that. (It was sexy!) Even though he risked major fury from his traditional parents, whom he correctly assumed would freak out once we told them we eloped, he married me anyway.
I like to think that if we hadn’t been pulled into marriage by circumstance, we would be living much the same way as we are now, but without rings. I suspect we would have moved in together, eventually. I kept my own name, so that would be the same. Family obligations might be different, but maybe not.
But would we have grown this close if we hadn’t experienced the medical emergency that pushed us into marriage? I doubt it. Lupus woke me up and forced me to take a leap of faith with Chris.
And it taught me this: Being married to someone you love is a lot better than being married to your own cynicism.
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