Monday, January 30, 2012

Benji says,

"I'm un-vincible!"

Sunday, January 29, 2012

Getting the good days to 10+ tips for surviving fibro

With fibro, I don't have a lot of control over how functional I'll be from one day to the next.

But I'm starting to discover I do have a little control.

There are certain things I can do that help me be MORE functional (and, surprisingly, not eating sugar is not as high on the list as I thought).

Here are the things, in order of importance:

1. Sleep enough. If I don't get enough sleep, none of the rest of these will help me at all. Sleeping enough means I have to sleep when my body wants it (not when society says, so for me at 3:00 am) for as long as my body wants it (so no alarm clocks allowed). I usually need to sleep a minimum of 9 hours to have a good day. If I don't have a vivid dream that I remember when I wake up, I didn't sleep long enough.

2. Take vitamins. At night before bed, I have to take a prenatal vitamin or multivitamin, 2 calcium, and a magnesium. I can skip the prenatal vitamin, but not the calcium and magnesium. In the morning, if I remember, I take potassium and fish oil. I can take the fish oil at bedtime, but if I do it too many nights in a row, then I can't fall asleep. I'm still trying to figure out how to get the fish oil worked out right, but it definitely makes a difference.

3. Make myself get up and move around. It's so SO tempting to sit in my comfy chair all day every day, but I really feel better when I get up and do very gentle exercise every day. The key is that it has to be easy, gentle exercises that don't stress my body at all. No impacts, no tensing muscles, no breaking a sweat or getting the heartbeat going. A nice gentle walk in cool weather works wonders. Hiking, calmly and in a relaxed way without carrying anything, is also great--I think because the mountain air keeps me cool, but I'm not sure. Maybe it's because I love being out in nature and that makes the exercise more relaxing--it's kind of the opposite of a gym. Gym=evil for me.

4. Eat and drink enough. Drink only water. ONLY. Healthy food helps a lot, but sugar has less impact than I thought it did if I'm doing the previous three things. If I'm not, then sugar is really bad stuff. Mostly, though, I find that the advice in the Word of Wisdom works well: Lots of fruits and veggies, lots of grains, meat (but sparingly), and then don't worry too much about the details of it. Often, when I'm already hurting, drinking hot cocoa, hot postum, hot cafix, hot cider helps immensely. I think it's the holding the hot cup more than anything, though, not what's in it.

5. Control my movements, especially avoiding holding a position (doubly especially with any muscle tensed). Never repeat a motion more than 5 times without changing the activity a bit, never hold my arms out or up, especially with anything in them (holding a cup half full of water out to a child has been known to make me lose my temper because it causes pain). Never tense a muscle and hold it that way. I read once that people with fibro should imagine an old fashioned hoop skirt hanging from their shoulders and never move their arms outside that shape. It really does help. I have to be careful to let my body "float"--not let my wrists and hands push down into the keyboard, not hold the steering wheel tensely when I drive, not hold things tightly or move with any kind of jarring motions. I can't carry heavy things because that requires me to "tense and hold" my muscles, and that's bad. Standing (like in line) for too long is very bad because it is a whole body "hold," and holding a position is painful. Sitting in a car for a long time is the same.

6. Avoid impacts. Kids banging into me, bumping into objects, walking hard (stomping my feet, for example, or jumping), getting hugged or kissed too suddenly--all are not good. This includes all kinds of sensory impacts, not just touch impacts--sudden bright lights, sudden strong smells (like from perfumes and lotions) and sudden noises are impacts, too. Emotional impacts are also on the "out" list--no fighting, no getting yelled at, no emotional extremes without any buildup or let down--I try to stay as level as possible. My lucky kids--I pay if I get mad at them, so I try not to. (Sometimes this is inevitable--I do have six kids, after all, and sometimes they get in trouble; often, though, if I'm losing my temper it's because I'm in pain, not because of something they did; pain is common, so I ignore it until it must be dealt with, and then I often experience it emotionally first, through anger, and physically afterward, when I realize I'm hurting all over). This one is the hardest to control--by nature, impacts are not expected.

7. Stay away from tight and bulky things--especially things you wear that are tight or bulky. Anything that squeezes at all is too tight--nylons squeezing my legs, socks squeezing my ankles, skin-tight shirts squeezing my arms, waistbands squeezing my waist, earrings pinching my ears, hats squeezing my head--all are bad. Even gentle squeezes from clothing can make a whole limb ache. And I can't stand to have shirts (or anything else) tight around my upper arms, or have anything touching my armpits. It's just bad. I can barely stand to wear glasses because they squeeze my nose and ears (or else fall off). I am very limited in hairstyles I can use because I can't blow dry my hair (that's a tense-and-hold position) or put anything in my hair that makes it squeeze my head. Interestingly, I find it especially important to not have anything pushing on my toes. I can't wear nylons because they squeeze my toes. I can't wear shoes that touch my toes almost at all (shoes, in fact, are a serious issue for me--finding shoes that don't make my whole body hurt within a few minutes is very difficult, and when I find them, I wear them until they literally fall apart and can no longer be worn. My shoes have to be easy to get on, not touch my toes, soft to wear, loose but not take any effort to keep's tricky!). Also, no layers (too bulky).

8. Sit when I get the urge to sit, and then only on my soft chair that reclines a little too far and cradles my back in just the right way. Sometimes I only have to sit for 5 minutes and then I can get up and get moving again, but when my body says, "Sit now," I HAVE to sit--right then--or I pay for it. Sitting on hard chairs, benches, the floor, or even the wrong kind of "soft" chair is a nightmare that makes my whole body hurt. Church is especially hard because of this.

9. Avoid temperature extremes, but especially cold. Getting too cold makes my whole body ache. Ironically, though, the things you usually use to bundle up and stay warm are all tight or bulky, and both of those are bad. My husband got me a pair of leather gloves lined with something soft, and those have been heavenly--they're a size too big, so they don't squeeze anywhere, but they keep my hands warm when I drive. I wear coats that are a little big, and my mom got me a scarf that has a hood sewn into it, so I can keep my head warm in the winter without anything ever squeezing it. I also very much enjoy the hot wax bath for my hands that I "adopted" from my mother.

10. Avoid medications as much as possible. The side effects as so much worse, usually, than whatever I'm dealing with that it's just not worth it.

11. Get in the sunshine often, but without getting hot. Sitting in the sun and getting hot doesn't help, but sitting in the sunshine when there's a cool breeze, or when I'm eating a popsicle--that helps. Sitting in the pool DOESN'T help. I'm not sure why. Perhaps it's because the reflection of the sun on the water is too bright, or because a pool is rarely quiet, and calm, or maybe because I don't like getting my face wet, so being around the threat of getting my face wet is too tense, or maybe it's too much chemicals. I try to avoid chemicals.

What doesn't work? Exercise (other than the extremely gentle ones I mentioned before), high anything diets (for me, fibro control is all about balance, levelness, gentleness to myself), massage (feels so nice when I'm getting one, but my whole body hurts for a week after), "toughing it out," pushing my way through the pain, walking it off, working when I'm tired, getting 8 hours of sleep on a regular schedule,

Interestingly, if I can a) get enough sleep, b) get my vitamins, and c) control my environment to adjust to all the rest of these, then I am a fairly functional person. I still can't pick up toys, but I can get a lot of things done, can have meaningful interactions with my kids, can avoid taking any medications (for sleep, for depression, for anxiety, or for pain, all of which most people with fibro need). What more could I ask?

I have a lot of friends and family with fibro, and as I write this, I'm curious: What do you do to survive? Any tips or tricks that work for you?

Saturday, January 28, 2012

Ten Years Ago....

This is what Tim was doing:
See that firefighter with the beard? Yup. That's Tim.

And I narrowly missed being killed by a hockey puck because I dropped my ticket and bent down to pick it up....

Did I just read that?

From "BOUNTIFUL -- Last March, Julene Weaver gave birth to her daughter Sarai in her home, the first of her three births carried out that way. "

She had three babies at home since last March? That's tricky. She has 3-month gestations? That would be nice...

Thursday, January 26, 2012

Latest from the Kazoo Man

And I bet you didn't know Tim can make a kazoo rap.

Wednesday, January 25, 2012

Did I just read that?

"Wednesday, the Utah Legislature considered changes to the state sex offender registry, mandating college entrance exams for all high school students as well as changing the definition of emotional abuse in nursing homes, among other bills." Another from's home page today.

So right now the sex offender registry apparently doesn't mandate high school students take the ACT, and the sex offender registry has defined what consists of emotional abuse in nursing homes.

Does that mean the state sex offender registry is another name for the Utah Legal Code?  What does that say about Utah's congress?

Did I just read that?

"A man is holding himself hostage at the Rite Aid pharmacy on 150 N, 900 W in Salt Lake City."  From the home page of today.

That is tricky. He's not allowing himself to leave? Hmmm....

Sunday, January 22, 2012

More reading program frustrations...

Can you tell I'm building a reading program right now?


I've looked at dozens (if not hundreds) of "how to read" activities online, and I have found a consistent pattern: the teachers think that in order to learn how to read, the students have to have a fundamental understanding of how reading works. (And this is categorically not true.)

So the activities have students doing things like identifying the diphthongs and the digraphs--using those vocabulary words, even--or identifying different phonemes.

The trouble is, it isn't necessary to know those things to learn how to read. It's necessary to know those words to discuss reading education, but to learn how to read? You don't need to know that "TH" is a digraph. You just need to know the sound it makes you when you come across it--both sounds, actually ("That" and "Teeth" have different TH sounds).

So these "brilliant" reading ed specialists who make these programs consistently teach things that are confusing and unnecessary, and they continue to insist that "ink" is an example of the short "i" sound--as in "pink"--and that "oo" is an example of the long U sound--as in "boot" and "foot" (because we pronounce them "beaut" and "fewt," right?) Someone needs to teach all these experts how to hear!

And then they wonder why the kids can't read.

Nathanael says,

Nathanael's primary goal in life is to get big.

Yesterday, I asked him what he wanted to be when he grew up. He didn't understand what I was asking, so I tried to clarify: "Do you want to be a doctor?"

"No," he answered solemnly. "I want to be bigger than the doctor!"

Tim has a strange job

This is what he did this week:

Saturday, January 21, 2012

Diaper Duty...

I have two kids in diapers right now. I've had two in diapers for years now, and three in diapers for a little while at one point.  And last night I finally hit a wall where I suddenly realized I was sick of changing diapers. After over 10 years of having someone in diapers all the time (and usually more than one someone), I finally got sick of it.

So I started doing a little math. I estimated that the kids average out at about 6 diapers a day for 3 1/2 years before they're potty trained. (8-10 per day as newborns and for a big chunk of the first year, but it peters off to about 4-6 per day for the last two years, depending on the kid.

That means I've changed around 39,420 diapers as of today.

Yikes. And at least 6500 to go just for Nathanael and Elijah. And if we have two more kids (we've planned on having 8 for many years now), that would add another 15,330 diapers to the total....I guess I'd better stop thinking about it. I have a long way to go, and a lot more diapers to see before I'm done.

(And I estimate I will have changed over 61,000 diapers by the time I potty train my last child.....YIKES!).

Wednesday, January 18, 2012

Reviewing Reading Resources--ouch

I don't know why people who write educational content are not very accurate with their content. It's driving me crazy!!!

Funny does not mean "full of fun."

'wh-' makes a different sound in "Who" and "What"

"Ankle" is not an example of the short a sound.

And "ink" is not an example of ANY 'i' sound, short or long. It makes the long e sound, as does "pink."

Oh, and "sight word" means you cannot sound the word out using the rules of standard English. "Girl" is a sight word. So is "margarine."  "Light" is not actually a sight word (it follows the rule that says that "igh" makes the long i sound). "That" is not a sight word. Neither is "She" or "go," but "do" is.

Biggest pet peeve, though, is "leveled readers" that include words and sounds the student hasn't learned yet. And also "leveled readers" that have too many words in them. Reading, at first, is exhausting. First readers for K-level emerging readers should have 2 words for the students to decode.


Thanks for letting me vent.

I have come to the conclusion that the best reading educational program is a reader and someone who wants to know how to read, a pen, and a paper. And lots of time. All the programs in the world can't compensate for a lack of one-on-one reading teaching. It's really the best way.

Monday, January 16, 2012

Strawberry Shortcake

Daniel informed me this week that we needed to have strawberry shortcake. Since strawberries were on sale, I thought that was a good idea. 

So today we tried it.

When my family had strawberry shortcake, we really meant strawberries and cream on angel food cake. Some people mean strawberries and spray cream on those little fake sponge cakes they sell in the stores by the bread. 

I had read recipes for strawberry shortcake before, though, and I knew it was supposed to be more like a biscuit than a cake. 

So tonight I pulled out four cookbooks and compared recipes. I picked the one that was the least amount of work (Thank you "Bed and Breakfast Cookbook"!). It said it made six, and I was going to double the recipe until I saw it had four cups of flour in it. I didn't think I needed to double it, and I was right. I made eight shortcakes, and they came out HUGE--as big as a small plate, not nearly the size of a biscuit like I had guessed (those, it turns out, belonged to the recipe in the 1950 edition of the "American Cookbook"--in that recipe, though, you had to roll them out and cut them, and then stack two biscuits and bake them that way).

And our conclusion:

There is a reason strawberry shortcake ends up in so many cookbooks. That was GOOD. It would have been better with real whipped cream, but when I was shopping yesterday I stood in front of the cream for a long time and couldn't remember why I thought I needed to buy it, so I didn't buy it. So we were stuck with cool whip. But with real fresh strawberries and real shortcakes--YUM. 

Yet more yogurt adventures

We tried more than one new kind of yogurt this week.

One of them was almond milk "yogurt," raspberry flavored, sweetened with fruit juice. It was called amande, I think.

One word:  Inedible.

Sunday, January 15, 2012

More Yogurt Adventures

The guy at the Sunflower Market today told me that Noosa yogurt was very popular and that the word on the street was it's more addictive than drugs.

And it was on sale.

So I tried it.

He was right.

Noosa is a local company, though, so you might not have this most yummy of treats in your area, and I'm so sad for you if you don't. It might be worth driving to Colorado to get some.

Saturday, January 14, 2012

Nathanael says,

Upon being handed a bowl of chicken and broccoli soup for dinner, Nathanael said (in the most plaintive voice), "Aaahh. I wanted a plate of marshmallows for dinner!"

Monday, January 09, 2012

The "New" Living Room so far

The wall gallery. There are 14 pictures hung on this one wall (not all are in the photo). Eventually, we'll have a piano where the two computers are, I hope, but for now we need the screens. Also, ignore the stuff piled everywhere--we're emptying cupboards and bookshelves to move them.

The ceiling fan I put together and installed, plus the temp shade. We're watching for a smaller one, but this is the only glass shade at the store the day we looked. For now, it works.

So that's the start in here. Moving step is moving bookshelves and cupboards. Then building a new full-wall shelving system with two built-in computer stations. Hooray!

Friday, January 06, 2012

Re-doing things part 2

We aren't just re-doing the living room.

I've noticed lately that Tim is on the cusp of a music revolution.

It's not all that new--he's been developing it for 10 years. But he's just right on the verge of going over the cliff now, and it's kind of exciting.

What we both noticed is that invariably, a cappella music, both recorded and live, is mixed as solo vocals with background vocals. This makes sense at first glance because all the music is being produced vocally.

But it doesn't leave the finished product with a deeply satisfying sound. It sounds rather vapid, bloodless and soulless (although harmonic). Even when a cappella groups cover dance songs, they never make you want to get up and move. They're just kind of there, being a cute novelty.

Two days ago, Tim sat me down in front of his great studio speakers and said, "Listen," and he began to play songs for me, starting with one by Nine Inch Nails (who I've never listened to ever before. Ever.). We went through a few songs--NIN, the Killers, a couple of rock groups with Eastern European folk influences, Midnight Oil, and more--and I started to hear what Tim was hearing. In the mixing of these rock songs, instruments are not treated the same way as vocals. Especially in rock music (not as much in Pop, especially since modern boy bands came along 20 years ago) instruments are pushed way more forward in the mix than background vocals, so that they are almost competing with the lead vocals (but not quite). Rock is mixed more like live orchestral music or live big band music--every part makes an equal sound to every other part, with the lead or solo line being pushed front and center, but not by too much.

I've been telling Tim that I wanted his recordings and live performances to not hold back, and to have an edge that they have been almost hitting but not quite, and when I listened to all the rock music, I understood what was missing: the background vocals needed to be mixed like instruments, treated like instruments, and given the musical status of instruments, not of background singers. The instruments are core, essential parts of the music. The background singers in most songs are color.  Can you imagine if they put the drums, bass, and guitar into a rock song in a sort of secondary role? The songs would be vapid, bloodless, and soulless.

Just like a cappella is 99% of the time, especially in recording.

And with technology the way it is now, there is no excuse for this.

Tim doesn't want to go from doing things all vocal to fronting a band. There is a sound quality that voices produce--even heavily effected voices--that is unique. You wouldn't want to substitute a tuba in for an electric bass, right? It's just a different sound, even if they can hit the same notes. Same with voices for Tim.  But he wants the voices colored and mixed and "placed" right in the performances and recordings.

Interestingly, one of his good friends stopped by this week with a new toy--a super-cool mega effects pedal. When they were playing with it, I was upstairs and couldn't tell if they had turned on a professional music track or if they were looping. It sounded AWESOME. And the new effects pedal pushed everything into that realm that Tim was looking to reach. Interestingly, but not surprisingly, it's an instrument effects pedal, not a voice effects pedal.

Tim's friend, Matt, pretty  much summed it up. He told Tim, "I don't want to sound like a voice anymore."

So the revolution has begun.

And I predict that very soon people will no longer try to class Tim with the singer-songwriters at events, and nobody will ever again try to put him in a little cafe in the corner at festivals...any more than you would put the Killers there.

Tim is finally defining his sound, and I think it's going to surprise you. In a good way.

We're re-doing things around here....

I stared at my house for a long time the week before Thanksgiving, and I realized that we never really moved in to this house.

We've been here for a little over 2 years now (this second time around), and we never really unpacked boxes. Never really unstacked the boxes, even.

Consequently, everything was everywhere, and when we cleaned it was just boxing up the chaos again and moving the boxes to a different spot.

I decided I needed to do something about that.

Then Tim got us a couch for Christmas, and that spurred the change. We needed to make a space to put the couch in.  Right on the heels of that, the one lamp we had in the living room burned out and I couldn't find the right specialty bulb for it, and it was broken anyway--propped up in the corner by a table because it could no longer stand on its own.

I sat down one night and thought through every single room and what I wanted to do to make it right. And I sent the list to Tim. The next day he came home with the shelf I wanted for the bathroom.

Not long after, we sat up one night after the kids were in bed and talked through the whole living room, puzzling out how to rearrange it.

So when Tim went to Vegas, I took down the Christmas tree. Then, as soon as he was back, we started changing things up.

First, I re-did the living room arrangement--took out the table full of mostly-unused computers, moved a bookshelf and my rocking chair, put in the couch.

Then I tackled the lighting problem. For a couple of days, Tim and I searched for one of those lights you hang from a hook and run a chain to the outlet--swag lights, I learned they were called. No good. Nobody's made those for years, and even the people at the thrift stores hadn't seen one come through in a long long time. But on one of my loops through Home Depot, I discovered they make a swag chain kit for a ceiling fan!

Every summer for years now, since 2004 when we bought this house, I've wished for a ceiling fan in the living room. But we don't have an overhead light fixture in the living room, and, to complicate things, we have no attic or crawl space, so installing a ceiling fixture seemed impossible, and a ceiling fan doubly so. So finding a swag chain kit for a ceiling fan got me all excited.

I bought that. The next day, I went out in search of a ceiling fan to install. I finally found one in a box at the local thrift store for $6. There were others, some even all put together, but they cost more. A quick survey let me know that all the parts--including the installation manual--except the glass cover for the light bulbs was there. Even the screws were all in the box. The fan was dirty, but it was complete. So I bought it, brought it home, and started searching for instructions for installing a ceiling fan.

Turns out there are tons of instructions, but none for installing one directly to the joist, not to an electrical box. Finally, I took the hanging bracket to the Home Depot and asked for the right hardware. Turns out there is a kit for installing ceiling fans directly to the joist! So I bought that.

Then, with three kits, three sets of poor-written instructions (one set with no words, and pictures that were so tiny they were impossible to read), and no overall instructions, I set to work. I opened everything and examined all the parts, dragged the ladder in from the garage roof (where it's been for 3 months because I was too lazy to move it), and got to work.

I quickly discovered that people with fibro arm pain shouldn't install things on the ceiling. I also discovered that Elijah likes ladders and is perfectly willing to climb them. Still, I got the mounting plate up working 5 minutes at a time, resting 10 minutes to half an hour between.  Every time I got off the ladder, I had to fold it up and lay it on the floor again so the baby wouldn't go up.

The biggest problem I had was the ceiling mounting box had a hole for the swag chain kit to attach to, but it was the wrong shape and size. I tried a zillion different things (or it felt like it anyway), but nothing would hold for long enough for me to get the box and the mounting bracket attached to the ceiling plate--especially since I couldn't do it without immense pain in my arms.

Finally, I MacGyvered it with a couple of paper clips, and it worked. Tim had to mount the box and the hanging bracket (which go on at the same time), though, because I just couldn't hold my arms up over my head that long. (Sometimes, I am reminded dramatically that fibro is a disability).

Once that mess was solved, the rest of the installation was very straightforward. We got the motor mount and canopy up, the fan blades assembled and installed, and the light fixture installed without too much trouble (from them anyway--the kids were another matter). Plugged it in, and--voila!--an overhead light and ceiling fan, in the living room. They're elegant, too. I am very excited and pleased.

Thank goodness Tim came home to do the overhead work though. He had spent most of the evening giving a lecture on the historical origins of modern college a cappella, comedy a cappella, and the Yale Whiffenpoofs at DU for their music series (my husband is a genius, by the way, in case you hadn't noticed...).

Now I just have one more swag hook to install (it got to be bedtime, so I had to quit working), and the glass piece to buy tomorrow, and then we'll be on to part 3 of the living room: designing and building built-in shelves/cupboards for the living room so we can put away all the junk that has been sitting around in boxes for 2 years.

Tuesday, January 03, 2012


Tim showed me a few pictures of my best friend from 3rd grade on facebook. She's all grown up now, of course, with her own family.  And when I saw her family, my first thought was, "HOLY COW! Look at all those kids!"

And then I counted.

She has six.

Oh. Um....

I have six.

No wonder people stare at me when I go to the grocery store with everyone!

Sunday, January 01, 2012

Nathanael says,

Nathie and I went to the store on New Year's Eve.  As we walked past the milk, he noticed the cartons of milk (we always buy jugs). The Horizon Brand especially caught his eye--it has a picture of a cow on the carton.

"Look, mom!" he said, "Cow juice!"