{"id":191,"date":"2008-08-07T13:25:03","date_gmt":"2008-08-07T18:25:03","guid":{"rendered":"http:\/\/72.9.147.40\/archives\/2008\/08\/monique-tells-why-she-doesnt-see-herself-as-e.html"},"modified":"2011-11-27T11:02:10","modified_gmt":"2011-11-27T16:02:10","slug":"monique-tells-why-she-doesnt-see-herself-as-e","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2008\/08\/monique-tells-why-she-doesnt-see-herself-as-e.html","title":{"rendered":"Monique tells why she doesn’t see herself as “e”"},"content":{"rendered":"

I’m delighted to present a guest post from cancer patient Monique Doyle Spencer, whose husband found the henna relief<\/a> for hand-foot syndrome we mentioned yesterday. She is a stitch. To me she’s about as empowered as they get, but she says she’s always felt a bit cowed by all this e stuff. We persuaded her to gift us with an essay. –e-Patient Dave<\/em><\/p>\n

It used to be true: I didn\u2019t understand this \u201ce\u201d thing — e-patientcy, e-patienthood, e-patience, e-patient-nation. I was more of a d-patient \u2013 disengaged, disinterested, detached. The only \u201ce\u201d I had was \u201celectronic,\u201d but why would I use that \u201ce\u201d for medicine when there are so many jokes to find and I have a discount coupon for www.more.stuff.i.want.and.if.i.buy.even.more.ill.get.freeshipping.com?<\/p>\n


\nI suppose everyone in the e-patient movement has that e-ureka moment when they get it. Mine is an upside down moment, because it required no engagement on my part at all. In a routine check-up with my oncologist, six years after my diagnosis, he ordered a bone scan. I had hurt my back doing yard work the night before. You know the rule: wait two weeks before you panic about new pain. So what was he doing ordering a scan? I asked him if he was the real Dr. Munchhausen \u2013 and sure enough, in two weeks that yard work pain went away. But the bone scan he ordered said that I had metastatic cancer up and down my spine.<\/p>\n

I asked Lowell Schnipper why he ordered that scan. What he said knocked me over: \u201cYou weren\u2019t yourself.\u201d<\/p>\n

So I realized why I\u2019m not an e-patient: it\u2019s because I have an e-doctor. How many doctors observe their patients closely enough to know that one of them is not herself? I also have an e-nurse, who notices that I\u2019m dehydrated when I have no idea that I am. I think this is amazing because the people who usually notice me carefully expect a hefty tip.<\/p>\n

Six months later, chapter two began. I was aching from Hand-Foot Syndrome caused by Xeloda. I couldn\u2019t stand the blisters. Nobody\u2019s remedies helped. Then my long-suffering husband, doing more and more research, discovered a study in Turkey using henna for HFS \u2013 very successfully. And it worked on me. That\u2019s chapter two: I have an e-husband.<\/p>\n

As the chapters speed by, I notice that I also have e-friends. E-children, a lot of the time. E-neighbors. Only the dog is not E, because it\u2019s hard for him to be E when he is napping for as long as I want to be. Everyone else in my life? Nothing but Es.<\/p>\n

So I\u2019m a c-patient: Complacent. Now that I\u2019ve been shocked by my experience I know that\u2019s true. My e-doctor and e-husband are both older than I am, and they take such good care of me that I will outlive them. What happens then? My e-friends, my e-neighbors, will eventually move away on their own journeys. I will be left with that non-e dog, the p-canine. I will have no e-patient muscles developed. Scary.<\/p>\n

I haven\u2019t changed yet, but I\u2019ve started up the first step of the Irish ladder: I do feel terribly guilty. There\u2019s this whole e-patient movement doing all kinds of interesting things and thinking, while I am taking an afternoon nap right after my morning one and before my evening snooze. I feel the same way when I write checks for the Walk for Hunger for other people to walk and I stay home eating all day.<\/p>\n

Step two of the ladder will be fear: what will happen to me when I am out of marbles and have no e-friends left? When I’m a stranger to my doctor, just like everybody else?<\/p>\n

I guess I get an F as an e-patient for now. Probably will for a while. Eventually, I\u2019ll have to get into it, because somebody will do a study. Remember the Mayo Clinic study proving that optimists live longer then pessimists, which didn\u2019t surprise the pessimists, not one bit? Well, somebody is going to prove what we already suspect: e- patients get better medical care, without being rich. C-patients get sub-standard care. E-patients live longer. And, e-vidently, e-ssentially, better.<\/p>\n

Monique Doyle Spencer<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

I’m delighted to present a guest post from cancer patient Monique Doyle Spencer, whose husband found the henna relief for hand-foot syndrome we mentioned yesterday. She is a stitch. 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