Awareness, ME/CFS, Personal

ME/CFS News and Petition

A brief summing up of what’s going on:

(T)he CDC (Center for Disease Control) intends to issue a sole-source contract with the Pacific Northwest Evidence-based Practice Center (EPC) to expedite the development of federal evidence-based treatment guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME).

Basically, they’re hiring these people to write up guidelines for treatment. So what’s the problem?

The EPC previously conducted a systematic evidence review in 2014, but failed to account for the use of the Oxford definition and other overly broad diagnostic criteria used in many studies and which do not require a hallmark symptom of this disease—post-exertional malaise (PEM). This led to the erroneous conclusion that GET (graded exercise therapy) and CBT (cognitive behavioral therapy) were effective treatments for people with ME.

I don’t want doctors who know little or nothing about ME/CFS to recommend these treatments to patients. Exercise can have devastating effects on us, and we have to be incredibly careful. I would hate for anyone to get even more sick just because they were trying to follow their doctor’s instructions.

As for CBT, it has its uses, but here’s the thing: ME/CFS isn’t a mental illness. You can’t, you CANNOT, train yourself out of it.

My sister Isabella, a fellow ME/CFS patient, shared this email with me, and since I don’t use Facebook or Twitter, the best way for me to reach out is with my blog. Please sign and share it. They are requesting signatures regardless of country/location. What negatively affects the ME/CFS community in one part of the world is bad for all of us.

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baking, dessert, food, fruit, Holidays, King Arthur flour

Summer Classics: Strawberry-rhubarb Pie

I didn’t get many pictures of this dessert (too busy making and serving it), but it turned out really well. My dad loves pie (looooooves pie), so I made him a strawberry-rhubarb pie, one of his favorites, for Father’s day. I considered trying a new recipe, but in the end I stuck with the old tried-and-true from my Joy of Cooking book.

For the crust, I chose pâte brisée (a butter crust). To help keep it flaky, it does have a bit of shortening, but it still has a gorgeous buttery flavor. I made the pie on a warm day, so I was a little concerned about the crust becoming oily, but I left it in the fridge for about an hour before rolling it out, and it turned out to be one of the best crusts I’ve made.

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As you can seen from the pictures, I did a lattice top, and I used corn starch for a thickener. Recently, I’ve been reading up on using less sugar in baking. I’ve been cutting the sugar in my fruit pies for several years, and I am happy with the results. As this King Arthur Flour article points out, sugar isn’t key to the structural integrity of pie the way it is to cake. If you’re working with good fruit, it doesn’t need a lot of sugar anyway.

However, this pie is a little bit different, because it has rhubarb. Now, I love rhubarb, but it is extremely tart, and you really can’t make a dessert with it without using a significant amount of sugar. For a pie filled only with rhubarb, Joy of Cooking recommends 1 1/4 to 1 1/2 cups sugar. With strawberries substituted for half the rhubarb, they instruct to drop the sugar to 1 cup. I cut that down to 3/4 cup, and was glad I did. The strawberries I was working with were wonderfully ripe and quite sweet by themselves, and limiting the sugar meant that the tartness of the rhubarb really shone through without being overwhelming.

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I brushed the pie with cream and sprinkled it with turbinado sugar–not only does the sugar look good, but it fools the tastebuds into thinking the dessert is sweeter than it really is. The pie set up beautifully, and sliced easily. It was well received by the whole family, especially by my dad, who said it was the best strawberry-rhubarb pie he had ever had. 🙂

As we finished eating it, everyone started deadpanning about how no one had enjoyed it, and they only ate it to be polite, because that’s just the sort of thing we do, and my sweet five year old niece assured us all: “I enjoyed the pie”. She’ll grow into silly sarcasm in time, I’ve no doubt, but I was touched by her support. ❤

ME/CFS, Personal

ME/CFS Awareness Day 2018

I am incredibly worn out (which is a thing that is likely to happen when you suffer from ME/CFS) but I didn’t want to let the awareness day pass without a mention from me.

Here are the things I would like people to be aware of:

  • Doctors and researchers: that the disease is real, its symptoms, and that there is a crying need for treatment and research.
  • Your average person on the street: that the letters ME/CFS mean that someone is really sick. After all, I don’t think any given person knows that much about AIDS, or MS, or ALS, but when people hear those letters they know that someone is really sick. And that’s all I want people to know: that it’s real and it’s serious.

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    In case you are wondering what is up with the pair of empty shoes, they are the visual symbol of ME/CFS Awareness day. Pictures and displays of empty shoes represent all of the people missing from society because of this disease. This is one of my favourite pairs of shoes.
bonsai, houseplants, nature, projects

Bonsai seedlings, week 5 update

 

It’s been five weeks since we planted our bonsai seeds, and I am happy to say we have seedlings for each species of tree. I was a little anxious about the Norway spruce (picea abies) because it had only one seed, but it sprouted! Oddly enough, we also have only one jacaranda sprout (jacaranda mimosifolia), even though that was the plant for which we had the most seeds. I’m a bit disappointed about that because that’s the tree I was the most excited about, but there’s still time for more to grow. Fingers crossed! As for the flame tree (delonix regia), two of our four seeds are growing, and five of the six Rocky mountain bristlecone pine (pinus aristata) sprouted. I’ll be posting more updates as our little bonsai babies grow.

bonsai, houseplants, nature, Personal, projects

Bonsai: a beginning

Both my husband and I love houseplants. Which is why our apartment currently has close to 50 plants in it. (Greenery overload! Some of them are refugees from my husband’s office and need to be re-homed.)

A few years ago, we went to a bonsai show. We wanted to get one for ourselves, but didn’t really feel justified in the expense at the time. Then, last year on our wedding anniversary, my gift to my husband was a juniper bonsai, which currently lives in our kitchen on top of our microwave (why yes, we are running out of flat surfaces on which to put our plants!).

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Our juniper bonsai, with a tortoise at its base.

Unfortunately, when it arrived it was infested with fungus gnats, which were killing its root system. After a couple of treatments*  the gnats died and the plant is recovering.

Then, last week, there was a further development in our bonsai saga: my mom gave us a kit to grow our own little trees from seed! Very exciting. And it’s just the right time of year to plant things.

The first step was soaking the seeks for 24 hours. The seeds for the flowering trees changed the color of the water, but the evergreen seeds didn’t. After they had soaked the requisite amount of time, we prepared the peat for potting. This involved pouring very hot water over the little discs of dirt and watching them expand to many times their original size.

After the dirt was rehydrated, it looked and felt like half-cooked brownie batter. In order to prevent mold, the instructions bade us squeeze the water out, which also helped to cool it down. That bit was pretty fun–there’s something very satisfying about sticking one’s hands in dirt and mucking about.

Then it was time to plant the seeds. Unfortunately, we only had one seed for picea abies, the Norway spruce, so I’m really hoping it sprouts. In clockwise order from the top left, the seeds are picea abies, the Norway spruce, delonix regia, the flame tree, pinus aristata, the Rocky Mountain bristlecone pine, and jacaranda mimosifolia, the jacaranda (I’m very excited about this one! Such beautiful purple-blue flowers). The close up is of the flame tree seeds, whose outer layer peeled off like old plastic.

 

At the bottom, you can see how much the peat disc expanded, and the last picture labels all the seeds and gives the date on which they were planted. The instruction booklet said that the Norway spruce can live for thousands of years, so . . . perhaps we will have to make arrangements for it in our will. Is there some sort of institution that cares for bonsai that outlive their owners?

They will not be sprouting for a least a few weeks, but when they do start, I will be posting updates about their progress. I’m very excited to see how they grow!

*A triple attack of hydrogen peroxide and diatomaceous earth (to kill the grubs, which do the actual damage) and cinnamon (to prevent the adult from coming back to lay more eggs). To paraphrase Mr. Darcy, fungus gnats “are my abhorrence”.
handicrafts, knitting, projects, Uncategorized

Noodling about with (knitting) needles

In January 2017, I made what (at the time) I considered to be a wildly optimistic New Year’s goal: to complete one knitting project by the end of the year. My previous knitting had consisted of two scarves and part of a hat. I have long harbored delusions of knitting grandeur: knitting blankets, sweaters, even lace. Unfortunately, I also harbor bafflement regarding anything more complicated than knitting and purling. Increasing? Decreasing? The words make sense, yes, but the techniques . . . and then there’s slipping stitches, passing slipped stitches over, yarn over . . . the list goes on.

So I decided that my next knitting project would be something uncomplicated. Something familiar, to ease my passage back into Knitting Land. Yes, you guessed it, I made another scarf. But this time I got fancy–I used three different colors of yarn.

And once I started, I really got into the swing of things, and finished it quite quickly. I didn’t use anyone’s pattern for this scarf, I just made it up as I went along. It’s pure wool, so I’m sure it’s very warm, but unfortunately it is very scratchy, so I’ve scarcely worn it. Not to mention we had an exceptionally warm winter.

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The finished product

At any rate, my success with this scarf emboldened me to throw myself back into knitting, and I have another project in the works. 🙂

ME/CFS, Personal

ME/CFS: coping by prioritizing

What I want to do: write a thoughtful post about ME/CFS. One that makes fellow sufferers say, “Yes, that’s exactly how it is! You’ve captured my feelings exactly”. One that helps people without ME/CFS understand what we go through.

What I am currently capable of doing: . . . not the above.

So, instead of that post, you’re going to get a post that requires less of me. What I’m doing right now: watching the Brother Cadfael mystery series (set in England during the 12th century). And noodling around on the internet. Yeah, doing two things at once is a good recipe for not really enjoying either one of them, but the impulse is difficult for me to resist. ME/CFS makes me restless and then robs me of the ability to concentrate or perform sustained physical activity. Whatcha gonna do.

Recently, in an effort to cut down on feelings of despair that accompany the inactivity enforced by my illness, I have taken to making a mental checklist on bad days: what are the one or two things I really need to do today? If I can decide what those are, I kill two birds with one stone: I am less likely waste my energy on nonessentials and waffling about what to do, and I feel less guilty for all the things I didn’t do. Somewhat ironically, setting my priorities often allows me to do more than just the basics.

It’s true that sometimes I don’t manage even the most basic things I wanted from a day, but I’m learning how to move on from it. To forgive myself, and extend myself the same understanding I would give to someone else. I do have bad days (weeks, months), but I like to think I do what I can. And that’s all I can ask of myself.

food

Homemade Pasta

A few months ago, I finally got up the gumption to use the pasta maker I got for my birthday a couple of years ago, with able assistance from my husband.

The dough is very simple: flour and eggs (with water if you need extra liquid). It doesn’t even have salt!

It needs to be rolled through the pasta maker at least 6 times before you actually put it through the attachment which cuts it. You add flour each time, and it starts looking less like a ragged strip of playdoh and more like food.

It was quite fun to work the crank and feed the dough into the machine. When we were done with that part, we put the dough through the fettuccine attachment. It only took 3 1/2 minutes to cook it, and it was delicious! I might cook it longer next time, though.

We have since used it to make lasagna noodles. We are still figuring things out, but are pretty pleased with the results so far.

If you adore pasta and like cooking, I recommend trying this out. 😃

baking, bread, King Arthur flour

French-style Country Bread

I’m baaaaack! I haven’t posted in quite a while, what with one thing and another. But I haven’t stopped baking. This is my first-ever attempt at artisan bread, and it went well, considering I didn’t have bread flour, which is what the recipe calls for. My bread machine is defunct, so I kneaded it by hand. The recipe wanted me to mist the oven every few minutes, but I didn’t have a spray bottle, so I put a cake pan with water on the bottom rack to provide the necessary steam.

I’m definitely happy with the way it turned out: it tastes like it came from a bakery, has a lovely chewy crust, and slices really well! But I’d like to try it again so I can do it exactly as the recipe suggests.

food, fruit, projects, Traditions

Strawberry Jam

 

When I was a kid, every year around the end of May, my mom would enlist us to help her in the kitchen with strawberry jam. The kitchen would be filled with pounds and pounds and pounds of strawberries, needing to be washed and hulled and cut into quarters. There was sugar waiting to be measured and pectin packets to be opened, all ending up in a large pan on the stove.

We put the jam in small plastic containers, which were ideal for storing in the freezer. All through the next year (but it was a particular treat in the winter), we would take out one box of sweet red goodness at a time, perfect for toast, PBJ, pancakes, and crêpes.

As an adult, I haven’t made my own jam until this year. I came upon this recipe via my sister Isabella (she scouts out recipes and shares the best ones with me, hooray!). It comes from a book called The Homemade Kitchens: Recipes for Cooking with Pleasure by Alana Chernila.

How to turn fruit into jam

  • Makes 1 1/2 to 2 cups

The secret that jam makers keep is that making jam is easy, and it can be done with whatever and however much fruit you have. A jar of jam can last two to three weeks in the fridge, so you can make one jar at a time with just a few minutes of stirring at the stove, no canning required. Thicken it with a little sugar, pour it into a jar, and you have jam. If you’re not canning your jam, you don’t have to pay attention to pH or acidity, so if you like to experiment, play around with sweetness, herbs, and other flavors with your fruit. Sugar is a preservative, so take note that if you use less sugar, you’ll need to eat your jam faster. This formula works well with berries, rhubarb, stone fruit, pears, and cantaloupe. Just adjust the water and sweetener according to the water and sugar content of the fruit you’re using. This is a quick jam that’s great for all sorts of uses in the kitchen. In the interest of ease and versatility, this recipe creates a loose jam, and there’s no need to worry about temperature or getting it to “set.”

  • 1 pound fruit, fresh or frozen (weighed after pitting, peeling, or cutting it appropriate)
  • 2 to 4 tablespoons water
  • 1/4 to 1/2 cup sugar or honey
  • 1/2 teaspoon fresh lemon juice, or more to taste
  • Optional: herbs, spices, other flavor additions
  1. Combine the fruit and water in a heavy-bottomed pot and set over medium heat. Bring to a low boil, cover the pot, and reduce the heat to medium low. Cook, stirring every few minutes, until the fruit breaks up into sauce, 10 to 15 minutes.
  2. Uncover the pot and stir in the sugar or honey. Raise the heat to medium and continue to cook, uncovered, stirring often to prevent the jam from burning on the bottom of the pot, until the sauce thickens, 15 to 20 minutes. Stir in the lemon juice. Taste, and adjust for sweetness if necessary. Allow to cool and transfer to a jar. If you’ve added whole spices, you can either remove them now or leave them in the jar to continue to infuse the jam for a stronger flavor.