Invisible Illness

On the last day of school the kindergartners had a "beach party." On the upside, Caitlin wore her bathing suit to school under her clothes (which is how she thinks she should dress every day!). On the downside, the whole day was 60-65 degrees, with a cold wind blowing down from the mountains. While this would qualify as a beach day on the cold coast of northern California, it wasn't nearly as much fun for the kindergartners as a nice warm day would have been.

Initially, Caitlin had wanted me to stay the whole time. She wanted me to watch her running around, getting wet, and playing in the tanbark (there's no sand here). Since it was a cold beach day, she ran around doing crafts inside, and played a bit on the kindergarten playground. After an hour and a half, she said that I could go if I wanted to. And I did. I was pretty run-down from surviving the last week of school, and was getting a cold. If I stood a chance of beating this cold before leaving for the Outer Banks, I needed rest. School was out in an hour anyway. As I was leaving, one of the other mom's asked if I was going back to work. When I said that I don't work and that  I was going home to finish some things (that, and resting), she gave me the funniest look and said, "Oh. I just need to be here with boys. I'm so sentimental. I need to cherish these moments."

I'm not sure how I'm processing all of that.

It wasn't the fact that she's sentimental and I'm not (I am, sometimes to a fault). It wasn't the fact that she wants to cherish these moments and I don't. It's the look she gave me. The tilt of her face and lost look in her eyes that  said she didn't understand *at all* why I was leaving if I wasn't going back to work.

The funny thing about fibromyalgia is how exhausting it is. And how invisible it is. Anyone who has fibro or has been around others with it understands when I say I'm exhausted. They understand that my body aches. They understand that my brain gets foggy, I get clumsy, and I need to rest. Sometimes in the middle of the day. There are times I feel like I can barely move! I don't even know to explain it. I don't even know where to start. Really. I didn't understand this before it happened to me. I'm not sure how to begin to explain how I feel. Because, in the eyes of others, I "don't look sick." I don't feel sick, either. I feel like this is a "condition", not a "sickness." Arguing semantics, however, doesn't seem to be the way to go. I feel a bit better knowing that right now, this doctor is on my side. I've seen several in the last few years, explained what I'm going through, and I've felt like I needed to convince them that I wasn't feeling well. I guess I should have presented them with a persuasive 5 paragraph essay. Maybe then a diagnosis wouldn't have taken so long. The truth of the matter is, I've gotten very good over the last 5 years at pretending I'm fine and looking the part, even when I felt like I'd been beaten up in my sleep. I've tried to do everything that everyone else did, and exhausted myself in the process. I dubbed 2009 and the first half of 2010 "the years of trying too hard," as I was so mentally and physically exhausted. Some drastic changes were made, and things have gotten better. And at least now I have a name for what I've been going through.

I'm not even sure where this post is going right now. I'm just rambling. But I know that this is not "in my head." I can't expect people to understand how I feel. That the things they take for granted aren't easy for me. Often times I feel like a little old lady. Most of the time I can't make it through a day without napping or resting (now that I take something to help me sleep at night, I usually only have to rest in the middle of the day). There are days that turning knobs or faucets is excruciatingly painful. Some days my skin feels like it's on fire and I can't stand being touched. There are many nights I lay awake, fully in pain, staring at the ceiling fan. But then again, some days are better. I stopped carrying the kids years ago because I was afraid I'd drop them. Something like going on a little hike without doing it on my terms is exhausting. Not for one day, but for the rest of the week. I want to go with my friends, but it doesn't always work. I want them to know that I want to be included. My fibromyalgia isn't as bad as some others I've read about, but that doesn't make it wonderful, either.  Often times, I can "push through" the pain. I come out exhausted on the other side, but most of the time I knew that would be the outcome when I started. It took me several days to recover from a MOPS retreat in January, but I was glad I "pushed through."

The challenge of having something people can't see is to explain it without complaining about it. I'm hoping that I can do that at some point. Back to the last day of kindergarten - Caitlin really didn't care if I went home. She was having fun. My little water baby also knew that we were going on vacation a few days after school got out, and that there would be a beach and a pool! As for me - I have to take care of myself. I hate the wondering stares. The ones that think I should be with my children all the time, unless I'm at a job (which is the only valid excuse to some). In as much as I'd like people to understand what I'm going through, I need to accept the fact that they don't, and maybe never will. And I need to move on.

Introducing....

Introducing the newest fourth grader and first grader! Or, as Brandon has coined, a "thourth" grader and a "firstergartner." He thought that since he was no longer in third grade, but yet not quite in fourth grade, that the terms needed to be combined. The other one he coined for himself was "fird" grader, but that one just sounds like he can't pronounce his words correctly!

Some Improvement

I've been on a gluten-free diet for about 3 weeks now. Only 2 1/2 months to go! It's really not that bad at home, although I do miss having the occasional sandwich for lunch. I also miss it being easy to go out and eat. There is a lot of gluten out there - buns, breads, pasta, sauces, flour, breading, noodles - you name, it has gluten! We've experimented with a couple of different types of flours and mixes. Some are good, some are not so good. The Bob's Red Mill gf pancake mix might be Brian's favorite now! I even bought a package for our upcoming vacation! It might not be available where we're going.

People who know that I'm doing this ask if I've felt any improvement. And I have - but only in my hand strength. About a week ago I was cleaning up after dinner. Brian had made dinner, and had used our enamel-coated cast iron pan. It's nice and heavy and flat, won't warp, and heats evenly. We got this pan in December, after reading that we could use an enamel-coated pan on our ceramic topped stove. I rarely use it because lifting it can be excruciating. I've lost my grip on it before, even using both hands to lift it, and almost dropped it. I chipped the enamel on the pan, and a spot of enamel on the rim of the oven. Luckily I didn't break the glass stove top, or my toes! Anyway, when I was cleaning last week I carefully lifted the pan off the stove top to bring it over to the sink. And it wasn't excruciating! It was heavy, yes, but my hands didn't ache! Amazing! I still can't open a bag of chips without scissors, or cut up chicken and veggies for dinner without taking pain-killers, but this pan experience was big! I was even able to zip up my shoes without using a jar opener as a grip. I've washed the pan once or twice since then, and was able to lift it and even put it away without issues! Go me! My hand strength has steadily declined over the last few years, and I'm not back to where I was before we moved here, but improvement is improvement!

As for any other improvement, I haven't felt anything. People told me I'd lose weight. Hmm... no improvement there. I guess they didn't realize that things like potato chips and chocolate are gluten free! As are nuts and most cheeses! Oh well. Going gluten-free has made no difference in the rest of pain or any internal issues that I've been going through for years (I'll spare you the details). In fact, some things are worse. Being that it's only been a few weeks, I'm not diagnosing any areas yet. I'm not as fatigued in the middle of the day as I was a couple of months ago, but then again, I've been taking medication for 3 months to help me sleep. After 5 years of sleeping poorly most nights, I've logged several 6-hour stretches of solid sleep in the last month! That's a first! Who knows if going gluten-free helps with that or not. I'm taking the doctor's orders about being calm and not over exerting myself very seriously, and declined several offers of joining the PTA or starting a Moms-Next group (a MOPS group for parents of older children). We'll see how summer goes. Being with children all day, every day can be quite draining. Then again, if we're all well rested, maybe we won't be as crabby in the middle of the day!

Princess Shoes

Caitlin calls these her "Princess shoes."

Looks like the princess has fallen on hard times. 

Almost forgot - here's the princess (trying to make her mom laugh)!

Learning New Things

I keep reading that one of the ways to ward of dementia and alzheimers is by mentally training our brains. Learning something new. Called neuroplasticity, it's the brains ability to reorganize itself by forming new neural connections. And it doesn't stop. The brain of a 70 year old is just as capable of learning new things and changing as the brain of a 30 year old. Besides wrapping up my Bible study, trying to organize a MOPS garage sale at my house this Friday (my final contribution to MOPS before my children are officially too old for me to attend. Go me! But seriously, my garage looks like we should be featured in an episode of "Hoarders"), and attending to my home and children, I'm also working on this...

Going gluten free.

It's not forever. Unless it works, I guess. I know I don't have celiac's (my ANA blood test came back negative). My rheumatologist wants me to try it out for 3 months (yes, 3!) to see if it helps the pain, fatigue, and stomach issues I'm going through. It's been an interesting week to say the least.

Fibromyalgia is a medial condition characterized by chronic body-wide pain, tenderness in the muscles, joints, tendons and other soft tissues. I've dealt with chronic back and neck pain for years - since the end of high school. That pain has been steadily improving over the years. Since we've moved here, however, I've dealt with chronic lower back pain, leg pain, knee and elbow pains (and other joints), sleeplessness, anxiety and fatigue, to name a few. The abnormal pain response that my body has gone through has not been fun (it's thought that the brains of those who suffer from fibromyalgia process pain differently than people without it). The other night I couldn't sleep because I was in so much pain! It's really no fun. No fun at all. Right now I'm on medication to help me sleep and help with the pain. I haven't felt much of a difference in the pain, although I am sleeping better. The meds make me dizzy from about noon on - like I've stood up too fast - which isn't fun, either. I sometimes wonder if I should be driving. I'd like to be able to get this under control, sleep through the night, get off the meds, and take a more natural approach, but I'm not there yet. After reading about how gluten could cause the pain and fatigue to worsen, and after talking to my doctor, this is where I stand.

I've become a fixture at Vitamin Cottage, which is a Colorado based health food and supplement store. Their prices are excellent for what they sell, and I can get a lot of things in bulk (like dried polenta, which is hard to find around here). No one bats an eye at you when you ask for things like GABA or xanthan gum, both of which I have in house now. It's amazing how many types of gluten-free flours there are, and the prices at Vitamin Cottage don't make me cry (weep a little, but not sob outright). I should check out Whole Foods one of these days and see what they have to offer. But Whole Foods prices can make a grown woman cry. It's closer, though, so I guess I'll be there soon.

My kids got all excited when I came home with rice cakes. Woo hoo! They're a little strange (the kids, not the rice cakes). The brown rice pasta's okay, but not as good as the whole grain pasta we usually eat. The GF brown rice bread is fine for toast, but is so dense that you could never use it for a sandwich (although it would probably make a fine sling-shot if you twirled the bad over your head and released it!). On the whole, it hasn't been so bad at home. Most of our meals seem to be fairly gluten-free anyway. The GF flours are good for thickening sauces, so no worries there. I need to figure out  the whole bread-crumb thing because I do like breaded and baked chicken. We cook it more in winter, so I've got a little while.  It's when we go out that's hard. You just don't know what's in anything, and it's amazing how much stuff is breaded or uses flour. I've eaten a lot of salads lately. Then I realized pad thai uses rice noodle.... a breakthrough night on the eating out front! I'm trying to concentrate on what I can eat, and not what I can't. Seems like half the residence of this area are gluten free, so I have plenty of resources should I have questions.

I guess through all of this I'll be making new neural connections as my brain figures it out. Luckily, though, around here I have a lot of shopping options, which will make my life easier. Next week I'm going to get some more almond meal for "breading" chicken. Going gluten-free and warding off dementia at the same time. Who knew?

Money Well Spent

We finally did it - we got a whole house fan. We've only been talking about if since we bought the house. A whole house fan is a fan that's installed in your ceiling, and when turned on pulls all the hot air out of our house into the attic. It has several benefits. Not only does it suck the hot air out of your house, but the force of the air into the attic pushes most of the hot air out of your attic as well. The fan also draws in cooler air from outside (when turned on during the cooler parts of the day). It works well on days that cool down. As a benefit, we're hoping it will lower our A/C bills in the summer when Colorado is amazingly hot. We had one in our rental when we first moved to Colorado. It worked well when we'd open all the lower story windows and turn in on in the evening or the morning. The trouble with that one, as with much of the house, was that it was old and cheaply done. The sound of the fan being turned on was akin to the sound of a jet landing in your hallway. It was so awesome that it was right in between the kid's rooms (sarcastic emphasis added)! Such fun when you have a one year and three year old. This one is also right between the kid's rooms, but it is a much quieter model. Even I might be able to sleep when it's on. Well, maybe when it's on low.....

Brian's hoping for a hot day so we can test it out! I'm not. We've got the rest of spring and summer and fall to test it out. I wish we'd had one in California. It would have made our fairly uninsulated rentals much more bearable!

Here's the nice hold they cut in our ceiling.

And, here's my attic (I know you've always wanted to see it!)

All the while, our driveway sort of looked like a spare parts yard.

Here is the final result. Looks pretty good, does it?

What it looks like when it's open.