The Handbook

September 8, 2006 at 12:41 pm (Uncategorized)

Today I am presented with a familiar dilemma. I am sick, both in the chronic and immediate sense. My lungs, already taxed by sarcoidosis, are struggling to fight off a case of bronchitis. I am on a strong antibiotic, but I’m still coughing and wheezing. Probably the best thing for me to do is retreat to my bed and read one of the library books piled on the floor next to me. Unfortunately, though, the very thing that will make me healthier faster is driving me absolutely and totally bonkers. Lying in bed is making me crazy.

What I want to do is putter around the house and tackle some of the clutter, bake some bread, put up a pot of soup for dinner, work on an essay I’ve been avoiding for four weeks, and then go for a brisk walk or a trip to the gym. Accomplishing a few things, as well as staying in a vertical position for a couple of hours, will greatly improve my mental health. But it will make me feel physically worse. I know because yesterday I forced myself down to the gym and onto the elliptical trainer, only to make my coughs richer and my head dizzier.

This is the part of being chronically ill that I’m not good at. I think when anyone is diagnosed with a chronic condition, they should be given a handbook that addresses concerns such as mine. It seems like there should be some quiz, akin to the ones in Cosmopolitan to rate your relationship, that would decide for you whether to languish or leap. Here’s an example:

Give yourself one point if your phlegm is yellow, two if it’s green, and zero if it’s clear. Assign one point for minor muscle aches and two for throbbing joint pain. Crushing fatigue earns two points; minor fatigue one. And so on. Those with a score below twenty can proceed to the gym. Those with a score below twenty-five can get out of bed. Everyone else should stay under the covers.

So many aspects of my life would be improved with a handbook. Parenthood, for instance, would be much easier if I had a simple guide to tell me what to do when Andrew refuses to sleep. I would have sailed through college if someone had let me in on the secret that just because three rum and cokes made me feel happy, three more wouldn’t necessarily make me that much happier. Alas, I’ve never seen the guides I need on the bookstore’s shelf. Instead, I’ve muddled along, figuring things out mostly by doing them wrong – repeatedly.

In a world without the corrupting influence of emotions, the decision of whether to lie abed another day would be easy. Better not to risk turning this bronchitis into pneumonia. However, the logic of this equation can’t penetrate to my core, where I am tired of the feeling of the pillow under my head. I sense time floating by around me, and I want to reach up and grab it. Or at least go for a few laps around the block.

1 Comment

  1. Deb McGrath said,

    Rebecca–I’m a friend of Leah Joki’s and was just talking to her via phone last evening and she gave me your blog site…I’ve just begun exploring…I’m a teacher and school year 2004-2005 from Christmas on I wasn’t feeling well…I had gone to San Francisco over the holiday and got a terrible influenza…from that point on–I started to get very bloated–ankles like elephants–face that would be swollen in morning and then water weight there would dissapate back to limbs. I was seeing my doctor–but she (and ME)–weren’t very agressive–and I put off a CT scan till school got out. Two days after school I had it and soon was in my doctor’s office.She entered, looked sad and weighed down, and was within a minute or two delivering the news that she thought I had ovarian cancer. Well, I could go on here with three million side details, but suffice it to say–I was sent to Seattle to the Seattle Cancer Care Center and University of Washington…and without about two million more elements of minutiae–well, I thank God was found AFTER TWENTY LONG DAYS that it was more likely that I had a heart problem…went back to Billings to good cardiologists–had a heart catheterization–and a little over a week later–had open heart surgery–I had constrictive pericarditis–and in a four hour surgery, they scraped the calcified sac off–so it wouldn’t constrict my heart from movement anymore (that’s why I had the incredible back of fluid everywhere in my body). I lost over 60 lbs. within about 2 months, started doing lots of excercise, was feeling better than I ever had as I approached my 50th birthday…but I was getting followup–like echocardiograms–and one brought warning signs…still an enlarged atrium, but now with lung pressures that weren’t normal…so off to a pulmonologist, and a chest x-ray and another CT scan…the previous xrays and scans couldn’t really “see” my lungs clearly because of all the fluid buildup in my body…well, now they could see pockets of inflammation…so this summer I had a lung biopsy–it worked out to be the not-very invasive kind instead of an 8-10 inch scar and having my ribs separated again…YEAHHHHHHHH!!! But a diagnosis of sarcoidoisis–and my pulmonologist says she feels that this also caused my heart difficulties…I’m not 100% sure–everything I’ve read about sarcoid and heart talks more of heart circuitry problems rather than constriction–but WHATEVER! I’m on prednisone now about a month–and go see doc this Wed. and will have a chest xray and lung function test and see her. Well, that’s my story. I will enjoy your blog and just thought I’d respond…HOPE YOU READ THIS. Deb M. (friend of Leah’s)

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