I lost Saturday. I went to bed on Friday night,  and when I couldn’t sleep, I read into the wee hours. I fell asleep at about 5:30 a.m. My intention was to get up around noon. When I first awoke, it was late afternoon, and I wasn’t able to get up. Darling Son always asks, “what bad thing would happen” if I did get up when I say I can’t. It’s not that simple, I explain. I just couldn’t get up. I suppose if there was a fire and I had to leave to save my life I could. But if I had an appointment, a meeting, a plan for the day, I would have cancelled. In the past, I have done just that. Over and over again. So I slept until 9:30 p.m. and finally felt human. But I didn’t get up then because that would start a cycle of me being unable to sleep at night, only for a different reason. So I stayed in bed and dozed on and off until Sunday morning.

This happens to me about once a week now. It used to happen just around the time I get my infusion of Actemra, a biologic drug used to treat Rheumatoid Arthritis. I’d sleep for 30-48 hours. That it’s happening more often means it’s probably time to change meds again. I take 32 prescription pills per day, plus about 14 supplements — turmeric, fish oil, green coffee extract and others that have some science indicating they might have anti-inflammatory properties. The co-payments for my prescription medications, not counting the monthly infusion, run around $1,400 per year with my current insurance. I am on a program for my infusion that for the time being covers the $400 per month co-pay for that treatment. I’m not complaining about the cost here. But keep in mind the financial cost.

In the 11 years since I was diagnosed, I have never been in remission. I have bounced from one biologic drug to another. I may start to feel better, but then some reaction to one of my drugs will kick in, or something will be recalled. Then I have to claw my way back to par. Or just below whatever par was before my meds changed. I’m tired of being ill, of losing days. People who hear me say I have to take a nap or have a rest often comment on how lucky I am and how much they wish they could have a rest in the middle of every day.

When I was in college, I lived for a time across the way from a quadriplegic man and his wife/caregiver. One hot day — I went to UC Davis, where temperatures spring quarter could reach triple digits — I saw her riding the back of his chair as he tooled across campus. “I’d love to have a ride on a day like this,” I said, mostly to her. He looked at me and said, “It’s the one benefit of being stuck in a chair.” Color me red. And suddenly aware of how little we know of other people’s plight, pain, and hardships. (As an aside, I have a handicap parking permit. It’s my one benefit of being ill.)

The thought returned to me a decade ago when I walked by a house I’d walked by a hundred times before, usually with some disdain. It has worn paint, grass grown knee high and full of weeds. Often there is a lawn mower left mid-lawn. There are old cars that don’t run, dusty toys, a falling fence. It’s on a nice street, so I was usually very judgy about it. Then I got sick and my own home and yard suffered from neglect. What did I know about the lives led by the people who lived in that house? For all I knew someone who was ill lived there, someone with severe depression, someone wounded in a war, someone cared for by his or her children, rather than caring for those children as a parent should.

So, yes, I nap. But don’t be envious.

I wish there was a cure on the horizon. But there isn’t. And jaded as I am, I think there probably isn’t a lot of interest in finding one, at least not by the drug companies. If my biologic treatments alone run around $30,000 per year or more, why would they want to find something that would turn off that spigot of revenue? In 11 years, my various insurers have paid out well over a half a million dollars in drugs and physician fees. It’s lucrative to Big Pharma. I’m lucrative to Big Pharma.

I’ve been telling people I’d like to crowd source the funding for a bone marrow transplant. They think I’m joking. I told my doc I was serious, but she said no, it was too dangerous. I sent an email a few weeks back to a doctor who does a lot of research into RA and other inflammatory auto-immune diseases. Is anyone working on a cure? And is anyone looking at completely resetting the immune setting with bone marrow or stem cell transplants?

This was her response — some of it is heavy on the science side, but I’ve left it intact:

“You are correct that the cause of RA is still not understood, although some progress has been made based on the understanding that induction of inflammation by environmental factors (such as smoking) can trigger production of enzymes (PADI) that citrullinate proteins and in an individual with the susceptible MHC class II allele those citrullinated peptides can activate a self-targeted immune response. There is research focused on the synovial fibroblast and its special destructive properties, but the whole story of RA pathogenesis requires further study. A number of academic centers do study the underlying mechanisms of disease. I can’t say to what extent biotech and pharmaceutical companies investigate the cause of RA, but companies such as Genentech do collaborate with academic investigators to study synovial tissue from patients to understand the basis of responsiveness to the various drugs. Current NIH grant support is terrible, and research in most areas of biomedical science is suffering. So you are certainly correct that more research should be done.

“Regarding bone marrow or stem cell transplant – it is being done in some centers but more for diseases that have greater mortality – such as scleroderma or lupus…(B)ut I don’t know anyone who would recommend this for a patient with RA.”

She didn’t really answer my questions, did she? And the last part? Well it ticked me off. Greater mortality doesn’t mean squat if life comes to a halt, if there is no quality to that life, right? No one would recommend this to an RA patient but an RA patient. It bugs the shit out of me that some doc who doesn’t lose days to this disease, who doesn’t know what it’s like to not be able to sleep but is exhausted says this to me. She doesn’t know what it’s like to not be able to work out, to not be able to work enough to take care of her family. She can’t comprehend what it’s like to never be able to keep up with her life in any meaningful way. In the 1,500 cases where someone with an autoimmune disease has had a transplant (for whatever reason), there have been deaths in 17% of cases, most of those in the earlier part of the 15 year period in which they took place. About a third of the patients experienced complete remission. That doesn’t sound like great odds to most people, but to me it sounds almost worth it.

Maybe I’ll have to find a doc in Germany or Korea or China or somewhere else where they are looking for a cure, where corporate drug giants decide how much they can get for the privilege of patients feeling a little better. Sometimes. For a while. It would be worth it to me.