No Poster Girl

I have a new blog! Join me as I tell the entire internet about my life with severe ME/CFS at No Poster Girl. 

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Blogepilogue

So I never came back as I promised to, did I? Until now.

Where have I been? At the end of 2007, right after Christmas, I very suddenly became bedridden. It happened almost literally overnight. And I thought I
 would bounce back some, as I always had up to that point, but I 
didn’t. So two weeks into 2008, I resigned from my job, which I had been 
doing from home since mid-2006.

What caused it? I stopped being 
able to sleep in October 2007. One night I went to bed and I just
 couldn’t fall asleep. Same thing the next night, and then the third
 night I slept for two hours. Then two days without sleep and then
 another two hours. We started trying over the counter stuff, which
 didn’t work, and then prescription stuff. After a few months of almost
 no sleep, I couldn’t walk, couldn’t stand, couldn’t sit up. Bedridden.

In
the process of trying to find something to get me to sleep, a doctor
 who failed to warn me what I was getting into had me on 2 mg of
 Klonopin, which quickly turned on me. I started a six-month hell of
 withdrawal in March of 2008. In May, we moved me from California to my
 mom’s house in Indiana, via air ambulance. And I went downhill all the
way through 2008. In the fall of that year my sleep drugs failed and I
 again went months without sleeping. Already totally bedridden, I believe
 I came pretty close to dying. I couldn’t lift a glass, couldn’t move my 
legs, my heart was going crazy, and the lack of sleep and another poorly-tolerated drug threw me
 into a sheer hell of paranoia and delusion.
 
At the beginning of
 2009, because of a fortunate leftover forgotten prescription for a
 soporific muscle relaxant from that same stupid doctor who’d prescribed
 the Klonopin back in California, I survived a couple months by finally
 getting a little sleep. Then in spring of 2009, with the combination of
an off-label prescription for an anti-psychotic and a new beta blocker
 (both of which I’m still on), I started to get some full nights of sleep
 for the first time in a year and a half.

Soon after that, we heard from Dr. Cheney,
 a prominent ME/CFS doctor whose waiting list I’d been on for a year and
a half. He could see me in June. So in June 2009, we took me – lying
 down in the back of my mom’s SUV – from Indiana to his clinic in 
Asheville, North Carolina. I spent two full days with him. He told me 
that of all the patients he’d seen in his twenty-five years of treating
 ME/CFS, I was among the half-dozen most severely affected.

When
 we left North Carolina, we took me to Pennsylvania, where Chimp had 
bought us our first house, near the college at which he’s now teaching. 
Once we got there, it took me a couple months to recover from the trip.
 While that was going on, it took about 90 days to add each medicine and 
supplement Dr. Cheney had prescribed, carefully, one by one, to avoid
 confounding any negative reactions.

Slowly, after about another
 three months, I started noticing tiny, tiny improvements. After six 
months, a little bit more. I could pet a cat a little. I could type a 
sentence or two. I could participate in a conversation for a few 
minutes. By Christmas Day 2009, I was able to walk the twenty feet from
 my dayroom to lie down in the living room to visit with my in-laws,
 who’d come up from Maryland. By March of 2010, I was able to walk to the
bathroom again – something I hadn’t been able to do since 2007.

At
this point – a bit more than halfway through 2010 – I’m still
 technically bedridden. But there are gradations of bedriddenness,
 believe me. In 2008, I literally could not get out of bed and walk
 across the room. Right now, I wake up in the morning in my bed, walk the
20 feet to the couch in my dayroom, and lie back down there, where I
 spend my days. Most days, if I want to, I’m able to get a snack out of 
the pantry five feet away. I can walk to the bathroom a couple times a
day. If I’m having a particularly good day, I’m able to get up and walk
 10 feet or so to the kitchen table and sit there for a few minutes,
 talking with Chimp. I’d say I’m about 98% bedridden.

So all of
 that’s why I’ve never been back. And because I remain bedridden, I don’t
have any plans to start blogging again. I miss the food business. I
 miss cooking even more. I miss the grocery store and my friends at the 
farmer’s market. I miss blogging somewhat less than all of those things,
 I’ll admit, but I did enjoy it.

The other thing that’s happened since I disappeared is the paper in the journal Science about the retrovirus XMRV.
 That’s what Dr. Cheney thinks my illness will eventually proved to be
caused by. (I’ll be tested sometime this year, when the “green
fluorescent protein” assay is introduced.) The XMRV discovery is huge,
 and it’s done so much for my sense of hopefulness – even though it
 possibly means I have an incurable retrovirus! Someday – hopefully soon –
there’ll at least be some treatment for my illness, and those of us who
are suffering will be believed – and vindicated.

 

On the First Cool Evening

Some nights my body is so weary I almost forget about my love of food and wish there was a microwave dinner I could heat up. Then I remember that it’s not a microwave dinner I want at all, just the ease of it. I love my box of vegetables and my piles of produce from the farmers’ market, but they are undoubtedly more work.

There was food in the fridge that Chimp had made, so without the energy to cook I ate pasta, chickpeas and tomato-zucchini stew without ceremony. As badly as I felt, I decided I deserved extra cheese on my dinner. A lot of extra cheese.

I closed up the house at around 7 p.m., with the temperature starting to drop. Tonight’s the first night that turning the oven on has felt like a welcome idea. I put some figs in to roast, and pulled from the refrigerator the bag of shelling beans I got from John on Saturday. I sat down to get them out of their pods.

He had told me there were three types; I put three bowls in front of myself. I quickly found three types, then four, then five; I incorporated two similar types into one bowl, then two into another.

The pods were of varying maturities. Some peeled open easily and the beans fell into the bowl almost without effort. Others I had to pry open with great attention. Every so often I misjudged the amount of force needed, sending a loose bean careening into space in a grand arc. The cat watched one fly and sniffed it on landing. It was swiftly deduced that it was clearly not cat food nor a cat toy and it and subsequent missiles were disregarded.

I combined one batch of beans with another, coming down to two bowls. Eh, I figured, even if they have different cooking times and some get softer than others, they’ll still look pretty together.

The warmth of the oven began to reach my spot at the table, warming my back. I sat shelling, aware of the darkness gathering outside and the rising smell of the roasting figs with a sweetness like a batch of molasses cookies.

The beans went in a bowl and the pods went in a growing pile. I thought for a long time about a friend struggling with a still-evolving problem and the difficult decisions that lay ahead. I thought about how much more pleasant it is to think on others’ troubles than your own, and how much easier it is to solve others’ problems in your mind than your own.

The last of the pods snapped open, I looked at the two bowls. I decided the difference between them was not really important. I combined them into one.

I got up and took the figs out of the oven and watched their edges curl around their flesh as they cooled.

I decided I would cook the beans plain, with butter.

Radish, Cucumber, Onion & Chickpea Salad with a Lemon-Parsley Dressing

Frankly, given how often I make this, it’s hard to belive it hasn’t made it to the blog before now.

This is one of my favorite dinner salads. We make it in spring, when the first radishes appear, along with green onions and green garlic. At that time of year, it tastes like a spring tonic after a winter of cooked green vegetables. The salad gets a rest during the height of the summer when the heat is too much for radishes here, and then it returns with the fall crop. This time of year, we use mature onions and garlic, and it’s a reminder that the days are starting to gather in.

Part of my love for this salad is that it’s super-easy – if the chickpeas are already cooked, it’s just a little chopping and getting the dressing ingredients into the food processor. Sometimes I’ll toss a little cooked grain into this salad – bulghur is my favorite, but quinoa or millet or even some cold brown rice would be nice. I do that – as I’ve mentioned before – because the grain picks up the dressing nicely and also gives the salad a bit more heft and a pleasant chewiness.

We had this with Yukon Gold potatoes from our CSA box that I roasted with olive oil and tossed with lemon juice, parsley and garlic after they came out of the oven. They were the sweetest-tasting white potatoes either of us had ever had.

Continue reading “Radish, Cucumber, Onion & Chickpea Salad with a Lemon-Parsley Dressing” →

Grocery Chain Wegman’s Grows its Own

ImagesThe always-innovative Wegman’s grocery chain is going a step beyond private label and has begun developing its own farm to supply some produce to its stores. The Wegman’s Organic Research farm is the subject of this article from the Rochester Democrat & Chronicle.

The privately-owned Wegman’s chain is known as a grocery industry leader because they really know service – and they really know food.

From the Department of Yikes!

120pxpopcorn02For those of you who have been following the stories about lung injuries from diacetyl suffered by workers at popcorn plants ("Popcorn Worker’s Lung" – and it’s not funny; this has killed people), here’s the first report of a consumer with the same illness, which has been at least correlated to his twice-a-day microwave popcorn habit.

Apparently he liked the smell of the stuff so well that he would open the bag and take a big deep whiff of the escaping steam, inhaling diacetyl each time.

The story, from the New York Times, also notes that despite it being the likely cause of his severe shortness of breath, the man was "really upset he couldn’t have it anymore"…but since breaking the twice-daily popcorn habit, has lost 60 lbs.

Maybe somebody could teach him how to make it the old-fashioned way on the stove like I do? I haven’t eaten microwave popcorn in at least a decade; I started avoiding trans fats in the mid-90s and all of them were loaded with hydrogenated oil back then (pre-Newman’s Own with tropical oil) and it had come to the point where the fake-butter (diacetyl) smell gave me the heebie-jeebies anyway.

Though I use plain old non-microwave popcorn, for those of you who are landing here with Google searches about Newman’s Own and diacetyl, I wrote to Newman’s Own Organics to ask them if their "natural butter flavor" contained the chemical, and here is their helpful reply:

Jocelyn,

Diacetyl is not added to any of Newman’s Own Organics varieties of Pop’s Corn, however, it is a naturally occurring substance found in butter in miniscule amounts. I hope you find this helpful.

Peggy Westenhofer
Director of Customer Relations
Newman’s Own Organics

Then I wrote to Newman’s Own, at a commenter’s prompting, about regular (not organic) Newman’s Own microwave popcorn, and here’s the reply I received:

Dear Ms. (my last name),

Shuster Laboratories, Inc. is a technical consulting organization retained by Newman’s Own, Inc. to provide technical and quality assurance services.

Currently, diacetyl is a component of butter that is in the flavor. It is a potential hazard in concentrated form as inhalant to workers in manufacturing. All safety precautions are in place at Newman’s Own manufacturing facilities. Newman’ Own is working to remove the diacetyl from the popcorn. We hope you find this information helpful.

Sincerely,
Newman’s Own Customer Service Team

So there you have it: Newman’s Own Organics microwave popcorn is currently diacetyl free (except for the minute amount naturally occurring), Newman’s Own microwave popcorn is in the process of going diacetyl free but is not there as of this September 9, 2007.