Tuesday, December 30, 2008

Guinea Pig Me!

I am now a participant in a research study on a new med for Fibromyalgia, called Reboxetine. It’s supposed to help not only with the pain, but also primarily with energy, FibroFog, and even sleep. I’m excited about both the med and the chance to be able to help other with Fibro by being a part of the study. I have a 75% chance of getting the real deal rather than a placebo.

I finally had my first appointment today with OHSU, whom I’m doing the study through. The snow and ice kept causing my appointment to be postponed and today was the last possible day to join, so I’m happy it worked out. I was there three hours, full of paperwork, lab tests, and a physical exam. Besides the appointments, I’ll have to phone in every day and enter a pain level number for the day.

During the exam, this doctor had me assign a pain level number to each pressure point. o_0 I hate having to pick a number and here I am signing up for 17 weeks of it, ha. As the doctor pushed on the first place on my back, I took a deep breath and said, “Five.” The doctor, standing behind me, commented (in his charming English accent), “You aren’t very remonstrative, are you? Most people say, ‘ouch!’ or cry out.” He didn’t get a gasp from me until a spot where the pain was 8. :-p

I guess I just don’t show my pain much. I’ve always wondered why people around me don’t seem to respond with “are you okay?” or such more often when I’m in a lot of pain. But even my family says they have a hard time telling how much pain I’m in. I guess I have a more internal reaction and hold my breath through severe pain.

One of the routine tests they did today was an ECG. For a while now I’ve been having heart palpitations and thought something seemed a little off, but my doctors just dismissed it so this is the first time anyone has ever tested my heart. Whaddya know, I was right! Turns out I do have an irregular heart beat, though that usually doesn’t cause problems. However, the test also showed a possibility of an enlargement of my right atrial. He said something about it being connected to my Raynaud’s*, but I’ve never heard of Raynaud’s affecting the heart, so I’ll have to find out more about that. I’m going in to my new primary care doctor in two weeks, and they should do an echogram.

I’m excited about being seen by this research doctor who not only is familiar with Fibro but has done extensive research on it. I’m hoping my new regular doctor will be good, too.



*Raynaud’s is a circulation problem in the extremities--mostly the hands. Blood vessels overreact to cold and constrict too much. Typically it only causes minor discomfort and slightly slower healing in that area.

Monday, December 15, 2008

And the wall came a tumblin' down!

The first term of this year is over and I made it through! Health-wise it was a difficult journey, many days finding me in tears because I was so tired or in so much pain with still too much homework to do. One weekend I went on a short hike with my HomeschoolAlumni.org friends and about landed myself in the urgent care from the pain. Then for about three weeks in the middle of the term I got hit with bad FibroFog (kinda hard to interpret when you can’t remember a word for more than 0.1 second…, and hard to get around when you’re not quite sure what one is suppose to do with the elevator buttons, much less what floor you’re on ;-p ).

BUT! God is so faithful and gave me just enough strength to get through. Thanks for all your prayers. My family and friends were encouraging (and sister-in-Christ classmate Breezy was always ready with a helpful “Amy, you won’t go to hell if you don’t finish your homework.”). My tutor has been so patient, too--he’s a huge part of the reason I’ve made it this far.

As many of you know, I’ve been struggling with my interpreting skills for a few years now. Because of my vision-related learning disabilities and my Fibro, it’s often seemed foolish to keep pushing on against what felt like an unmovable wall. I added a year to the program and voluntarily repeated a few classes in hopes that it would help, but last year it didn’t seem to have made that much difference. Yet I still felt God telling me to keep walking. So I did…just kept marching in silly circles around that Jericho wall, staring at those solid stones, knowing only God could knock them down, and trusting that somehow He would.

And He did!

The end of last term and over the summer I started seeing little cracks in that wall. This year it’s come a tumbling down! My health issues have still been big chunks of rock littering my path, but my interpreting skills have grown in leaps and bounds. Last month we took our first try at the big Qualifying Exam. Most people don’t pass it the first time and I passed the voice part and was fairly close to passing the signing part. I didn’t qualify for the internship yet, but I’m so happy with my score and am confident that I can pass the next one. Just today I got my grades back from all my classes this term and I got all Bs and As. For me that’s particularly amazing.
Now I’ve got three blessed weeks off. I’ll be spending them continuing to practice interpreting, working a little, resting a lot, and finally writing! I’ve so missed writing this term. I’ll be wrapping up the last few details of the latest Peculiar People book, Delivered, and then hopefully getting back to the Heirloom Chronicles.

This month I’m also joining a study at OHSU for a new med for Fibromyalgia. It’s suppose to help with both pain and the FibroFog, so I’m excited about it and am praying I’ll get the real med and not a placebo. I was suppose to have my initial four-hour-long appointment today, but icy roads nixed that plan. Hopefully the roads will clear up sooner than the weather people think, as the longer I wait for my appointment, the longer I’m off pain meds. My family is suppose to head to the beach on Friday, too, and right now the pass is pretty much impassible. At least the snow is pretty on the foothills!
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Tuesday, September 16, 2008

8 random things about me...

Lori at Persevere tagged me with this fun MeMe.

Eight Random Facts About Myself:

1. When I was little I had an imaginary twin sister named Jamie.

2. I love to do dramatic readings with all the voices (yes, I hear voices in my head!).

3. When I was young I thought crutches were the coolest thing ever and I hoped I’d break my leg so I got to use them. It started when my older sister had to use crutches and a removable cast for a while. When she recovered, the crutches were returned but the cast stayed and I loved to put it on and hobble around the house.

4. I can mimic whistling songbirds.

5. I can copy pretty much any accent I hear, but the Australian accent is harder for me to keep.

6. I love languages and culture. I started creating a fictional language and culture when I was twelve (someday I’ll write the book that goes with it) and today I’m fluent in two languages (English and American Sign Language) and know a smattering of a third (Spanish).

7. I am easily amused. I generally don’t mind people laughing at me because, hey, what they are laughing about IS funny, haha!

8. I’m a little face blind--that is, I have trouble telling people apart. This means when I’m watching a movie with a lot of characters, I have to keep asking, “Which character is that?” And if it’s a Who Dun It and the face of the bad guy finally pops on the screen, everyone gasps… except me. “Um, which guy was that?”

In real life it means I’m always running up to someone and then as I get close suddenly pretending I was waving widely at the person behind them, because it wasn’t who I thought it was. Or the most embarrassing is when a stranger asks me to save a chair for them and then when someone comes up to use the chair I’m not sure if it’s the person I’m saving it for or if I need to say, “This seat is taken.”

Just this weekend I was at a Deaf event talking to a friend and another lady when I spotted someone across the room and said, “Hey, look! There’s *insert name of well-known interpreter*!” My friend and the other lady looked at the person and looked at me, then looked at each other. My friend says to her, “It’s okay. Amy just gets a little…confused sometimes.” LOL

Now I have to tag eight blogger friends to do this game...
1. Joanne
2. Laury
3. Josh
4. SisJ
5. Purple Kangaroo
6. Jules
7. Jan
8. Kasha Sue

Saturday, September 13, 2008

I see friends...

Yesterday I attended a Deaf gathering at a Starbucks located a few towns to the south of me. It’s a monthly event but I haven’t gone for several months due to other obligation or to pain, so it was nice to go again. Since driving tends to aggravate my pain, and to save gas and have time to chat, I carpooled with my friend from school, Breezy. As always, we had a great chat during the hour drive to and from the gathering, about God and life in general.

We went early for the event and parted ways to meet other friends for dinner, then joined up again at Starbucks. I had dinner with a school friend from my first year in the interpreting program. She also has Fibromyalgia and is a Christian and the two of us leaned on each other a lot in order to get through that year of school. Her young daughters joined us for dinner and we had a lovely time.

Events like that are hard on me physically, but I always enjoy chatting with old friends and making new friends. Getting a chance to use ASL in casual, real-life situations is invaluable, too. I got to meet a couple of students who are entering the interpreting program this year. They seem nice. One of them was very observant and asked me if I was okay (I wasn’t ;-) ) and if I needed to sit down.

He had on a t-shirt that said “Got Candy?” Breezy and I laughed that I needed one like that because I’m infamous for the amount of candy I eat (hey, I can’t do or eat anything else, so why not enjoy my lollies?). They were rolling their eyes at the fact that I stay thin no matter what I eat and he said something about switching bodies. Breezy’s like, “Oh no! No way I’m switching bodies with Amy! Nuh uh!” LOL

Later another interpreter I haven’t seen for a while came in and I discovered that she also has Fibromyalgia. I think she is a Christian, also. She and I had chatted a little in the past, but we really hit it off that night. It’s always fun to find someone who can really understand what we’re going through.

As the night wore on and my pain climbed to more severe levels, a Deaf friend was kind enough to give me a gentle back rub, which helped, some. I think I want to see if I can get my insurance to cover some massage treatments for me.

Leave-taking always takes a long time in the Deaf Community, and as I was making my rounds saying good bye and giving hugs, I thought about how much more freely many of those in the Deaf Community casually offer a platonic “I love you” along with the goodbye hugs and waves. Perhaps some of it has to do with the fact that ASL can so easily incorporate the classic “I love you” sign into a good-bye wave, but I suspect it is even more because of how highly Deaf people cherish friendship and communication--some of them have had so little of either, especially in the past.

I’ve always been one to liberal with hugs and “love ya”s for my female friends, but occasionally in the hearing community I’ve gotten funny reactions--anything from a startled “oh, um, yeah” to “Ohhh, you’re so sweet! You know, people don’t say that often enough--we just assume they know it and we don’t bother taking the time to actually say it.”

But whether we say it, or show it, or both, I’m sure thankful for the love and care of my friends. I’ll definitely be needing a lot of it as I start the challenge of school in a week.


I see friends shaking hands, sayin’, “How do you do?”
They’re really sayin’, “I love you.”
...And I think to myself, what a wonderful world.


from “What a Wonderful World” by George Douglas and George David Weiss

Thursday, September 11, 2008

Heroes Among Us

The cry was faint. Gabriel stopped, holding his breath, hoping, waiting for it to come again. For a minute all he could hear was the mother’s stifled sobs behind him.

“Mama…”

“There!” Gabriel sprinted through the trees. He pushed through a thicket and his feet dropped out from under him. For a second he dangled over the edge of a cliff, clutching at thin sapling. His foot found a root and he pulled himself to safety.

From below, a faint whimper drifted on the wind. Gabriel leaned over the drop-off. A glimpse of pink showed, wrapped around a sharp rock.

“Mandy, honey, stay really still for me, okay?” Gabriel pulled a rope from his pack and looped it around a nearby tree. His first step down the hill sent a volley of rocks tumbling beneath him. The wails of the child increased. Finally he reached the child, who dangled secured only by a loop of her skirt that had caught around a boulder. The steep slope below the girl turned sheer, solid rock plunging another fifty feet to the bottom.

“You’re okay. I’ve got you.”


*snap*

Caleb jumped and almost dropped his book. He scowled and looked around the crowed airport.

*snap*

There it was again. He ran his eyes over the row of waiting travelers across the isle from him, noting the teen biting her already reddened lip, the mother grabbing for her runaway toddler, and--aha--a man studying a crossword puzzle and tapping his pen against his forehead. There it came. His fingers wrapped absentmindedly around the pen’s pocket clip and pulled. *snap*

Caleb picked up the book again.

Gabriel struggled to steady himself in the loose dirt and stones as he reached for the girl without dislodging her. Slowly, slowly…

*snap*

The book came down again and Caleb rolled his eyes. How could such a small sound bother him so much in a noisy, crowded terminal? And how was he supposed to get through college if he was so distracted.

“FL…T 93, BOAR…ING GROUP …. NOW.” The voice over the intercom was loud, but surprisingly muffled.

“Ah, that’s my flight.” Caleb stuffed his book, Real Life Stories of Real Life Heroes, into his carryon. “Guess there’ll be plenty of time to rescue Mandy during the flight.”

He stood in the line of shuffling people. Normal people, going on normal flights. How many of them were heroes? How many of them had risked their lives to save someone else?

Caleb wondered if he’d ever get that opportunity. He could see himself now, racing across the field, stumbling and tripping in the darkness. His ankle twisted beneath him, but he didn’t notice. All that filled his vision was the one gleaming eye of the train as it bore down on a woman who struggled in the middle of the track, her foot stuck in the--

*snap*

The airline worker slapped her clipboard down. “I said boarding pass, please!”

Muttering an apology, Caleb produced his paperwork. He filed onto the plane and found his seat. Middle chair. Figured.

“Hey, I’m Mike.” The man beside him offered a hand. “Where you headed?”

“College.” Caleb grimaced. “Not sure yet if that’s exciting or nasty.”

Mike chuckled. “I’m headed to visit my dad. Not exactly nasty, but he’s not the most fun person to be around. He’s not getting any younger, though, so I figure I’m due him a visit.”

“My dad was a hero.” Caleb bit his lip. He hadn’t meant to say that.

“Oh yeah?” Mike looked at him curiously. He motioned to the book the young man had already pulled from his pack. “You’re into heroes, huh?”

Caleb flushed a little. “Yeah, I guess. Always have been. I loved the superhero comics when I was a kid. Now I’m more into the real thing.”

“I know a hero.” Mike’s eyes lit up. “He was unbelievable. During a big storm he’d go right out in the middle of the water to save people. Most of the time he was quieter about it, though. Helping people who were sick... things like that.”

“I’ve thought about becoming a doctor.” Caleb grinned. “Be a kinda-hero, you know?”

“Yeah.” Mike nodded thoughtfully. “This guy I know does lots of stuff like that. But the funny thing was, people didn’t like him. Got pretty mad at him, actually, and threatened to make him stop.”

“That’s stupid. Why?”

“Hard to say.” The older man leaned back, buckling up as the plane started to taxi. “Maybe they felt guilty they weren’t helping people. Maybe they thought this guy was too much like God and threatened their religion.”

Caleb snorted. “Religions make people do stupid things.”

“That they do.” Mike sighed. “One time they were rioting against him. Things were getting pretty out of control. He was right there in the middle of the crowd and then he just disappeared. Showed up a long ways away. No one had a clue how he did it.”

“Wow.”

“They said he raised people from the dead, walked on water, stuff like that.”

“Just rumors, huh? They made him into a comic book man.” Caleb laughed.

“Maybe.” Mike waited as the plane took off, fighting gravity until it finally broke free and lifted up. “Maybe not.”

“What do you mean, maybe not? Hey, you really knew this guy?”

Mike pursed his lips, then continued the story without answering. “He had even more enemies than any comic book man, that’s for sure. One day they killed him. Just like that. Tortured and killed him because they didn’t like him.”

“Woah.” Caleb twisted to look at the man better. “Where was this?”

“Rome.” Mike rummaged under his seat and produced a tiny black book. “Here’s that ‘comic book’, all about his miracles.”

Caleb took it and flipped it over. “‘New Testament.’ The Bible? Man, you had me going there.”

“Yup. That’s ‘cause it’s all real. I know Him.” Mike tapped his chest. “He’s living right here in my heart. Jesus was one hero, that’s for sure. Still is, actually. How many people do you know who rose from the dead?”

Caleb shook his head. “I’ve never heard anything religious told like that before. That’s whacked.”

“Oh, don’t go making this religious. Jesus wasn’t about religion. He was about being a hero. A real life hero, come to save the world. All He wants in return is faith.”

The book was heavy and comfortable in Caleb’s hand. He flipped through it. “Those stories are in here?”

“Those and lots more. Here, I’ll show you why He came to earth.”

For another half an hour the men leaned over the “book of heroes,” talking about Jesus, and new life. After a while, Mike leaned back. “So, you interested in getting to know that hero? Having him be your friend, too?”

Caleb looked down at the red words in the book, words unlike any he’d heard before. “Yeah, yeah, I think I’d like that.”

Mike talked him through a prayer, but it wasn’t like any prayer Caleb had ever heard. It was more like… well, like talking to a friend.

“Here, you can have the New Testament. I’ll even write your name in it, and the date, so you can remember when you met your Hero.” Mike patted his shirt pocket, looking for a pen.

“Here.” The man on the other side of Caleb leaned over, offering a pen.

“Thanks.” Mike posed the pen over the book. “What’s the date? Eleventh, isn’t it?”

“Yup.” The man turned to Caleb. “I couldn’t help but overhearing the conversation. I’m a Christian, too.” He offered a hand. “By the way, I’m Todd Beamer. Welcome to the family.”



__________________
In memory of all the heroes on Flight 93 on September 11th, 2001. Except for Todd Beamer, all the characters and events in this story are completely fiction.

© 2008 Amy Michelle Wiley
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Wednesday, September 03, 2008

Summer, come back!

I can’t believe it’s September. In just three short weeks I’ll be back to school--with 19 credits, yikes. There’s no way I’d ever willingly take on that many with my health the way it is, but since I’m in a specialized program I don’t have much of a choice. If nothing else, it’ll sure force me to rely on God fully--no way I can make it on my own!

Near the end of the term we have the big QE (Qualifying Exam). We have four chances over the next two years to pass it and recieve a certificate of completion for the program. Basically the QE is ensuring that we can actually do a qualified job of interpreting. Most training programs in the US do not have a test like that, meaning anyone who can manage through the college classes with at least a low C is sent into the world to do real live interpreting.

I'm glad we have the QE, but it's rather scary. I asked my tutor yesterday if he thought I had a chance at passing it this year and he said yes! :-) He said he thought I could pass the sign to voice part pretty easily and if I can get my signing speed up then I had a chance at the voice to sign part. My brain just doesn't work like it used to (thanks to the fibro) and sometimes I have trouble thinking fast or talking in English at a normal speed, so it's doubly hard in my second language, even when I'm not trying to interpret. So that's something to work on and pray about.

I’ve been brainstorming to think of little things I can do to make it easier for me to get through each school day… things like getting a disabled parking permit so I don’t have to climb a hill and a set of stairs dragging my backpack in the freezing cold (though I’ve had trouble actually getting the permit), and arranging the schedule as much as possible so I don’t have early morning classes (that will help with sleepiness/brain fog and driving less, since traffic is less later in the day). I meet with the disabilities counselor a few days before school starts, and maybe we can think of some more things. Anyone else have ideas?

This summer didn’t quite go how I’d planned. I’d hoped to have the postcard project critiqued and to the final editor by the end of the term--I haven’t touched it all summer. I had some other projects I wanted to work on, also, and though I did keep up with my signing somewhat, I didn’t do nearly as much daily practice as I’d determined I would.

I feel like I spent half the summer in some doctor’s office or another. But at least that was effective and I now have a diagnoses and some treatments that are helping.

Today I got a new mattress for my birthday present from my parents. My old one was some 11 or 12 years old and not very cushy anymore. Last night Dad and I went to the only place in the US where the three major mattress companies have stores literally side by side (Dad says there’s only one place like that because no one else is that stupid, lol). It sure is handy for the shoppers, though.

Of course, there’s not that much that can be told about a mattress by laying on it for 30 seconds, and by the time I’d walked to the next store it was hard to compare them, but I finally just picked one. It’s nothing really fancy (not gonna pay four digit numbers for a mattress!), but has both support and a bit of a cotton topper to make it soft.

My bedroom is in pretty bad shape, so I had to work at it today so Dad could even bring the new mattress in. I’m one of those people who likes things to be neat and tidy, but not quite enough to actually go to the work to make it that way. I’m pretty organized with certain things like organizing the conference and Peculiar People, but I don’t have any energy left over at the end of the day to worry about a bedroom.

I was actually feeling okay most of the day, so I tacked the bedroom for probably too long. Tonight the frequent bending has me sore and stiff. But there is a wide clean swath through my room (I seriously found almost $20 in loose change laying around!) and a new mattress to look forward to! I’m curious to see how it feels to actually sleep on it. Off I go! Good night.

Thursday, August 28, 2008

An Award!

My new blogger-friend Lori honored me with the Arte y Pico Award. Lori is a lovely Christian lady who also lives with a chronic illness. Thank you, Lori!

I'd like to pass it on to my friend Joanne, who is able to find messages and truths from God in her everyday life, and then passes them on to the rest of us through her blog.

Tuesday, August 26, 2008

Invisible Illness Awareness Week

This is Invisible Illness week. From Laury’s blog I’ve borrowed excerpts from a list from of Ways to Encourage Chronically Ill Friends by Lisa Copen, and added a couple of my own at the end. But first, I’d like to share a story I wrote a few days after being diagnosed with Fibromyalgia. I’ve been able to share it with a number of people in my pain management class and other places.

My Journey
By Amy Michelle Wiley

The bridge arches against the horizon, the firm wooden slats giving slivered glimpses of the river below. The scent of cedar rises strong and heady in the breeze. He stands on the bank before it, waiting for me. He calls me by name, and we step together, He and I, onto the bridge. Onto the path of My Journey.

We reach the middle, the tallest point. I gasp, jerking to a stop. The joy so nearly bubbling from within me dies, the creeping grasp of dread reaching to my throat.

On the other bank the smooth wood of the bridge abruptly meets a dirt trail, rocky and pitted with crevices. The dark path twists downward, emptying into a valley filled with fog so thick it allows only shifting glances of thorny hedges and jagged boulders.

"But Lord," I turn to look at Him, tears already finding their way down my cheeks, "I do not understand."

"This is your path, my child." His eyes fill with empathy--something stronger yet than that, a knowing, an understanding beyond my own.

"I cannot cross that." Fear and confusion fill me.

"No, you cannot," He agrees. "Only through My strength can you travel that path."

"But," the word escapes me once more. I seem unable to stop it. "Why me? Why this path?"

He reaches out a hand, gentle and yet strong, lifting my chin so slightly. "Because, child, within you is a faith strong enough to make this journey. You will cling to me, and grow stronger because of the trials. I will teach you, and you will learn. In that, I will be glorified. This is your path."

I do cling to Him then, because my legs will not support me. My eyes leave His, drawn once again to the darkness of the trail. "Is that the good that will come of it, then? That I will draw closer to You?"

"Not only that." He kneels, drawing me to His side and pointing into the charcoal smog. "Look."

At first I see nothing, only the choking swirl of haze. Then I see a glimmer of light, far in the distance. It grows clearer until I can see a small house, lit only by a dim candle that seems one flicker from going out.

"You are the one I will use to brighten that light, encourage it and fan it into a flame so brilliant it will glow for miles around." His voice rings with a timbre that fills me with something--almost an excitement. "If you do not follow that path the light will continue to grow dimmer, until it fades to only an ember."

The fog closes once more, and I stand still, taking in the rocks that spike from the ground, the thorns leaning over the path, ready to shred any who pass by. Slowly, I take my gaze from them and turn back to Him, seeking assurance.

He lays an arm around my shoulder and points once more. The fog shifts in another area and this time I gasp in wonder. A meadow of emerald green shimmers in a gentle breeze, mingling with flowers blooming so brightly I can see them from the bridge, almost smell their sweetness. Birds swoop in gentle rhythm, playing among the limbs of the trees that circle the glen. It all flows in a dance of worship, of joy, of peace.

The Creator smiles. "This is a place of rest I have prepared for you along the way."

My heart sings. He cares.

He loves.

He has created for me.

He turns and looks full into my face. Compassion fills His eyes. "The path will be difficult. You will fall. You will hurt. The journey will be long."

He searches my face. I have no words to give Him. I can only grip Him tighter, and wait for Him to continue.

But I will be with you. Every step of the way I will be there. I will raise you when you fall. I will mend your wounds. When your strength fails, I will lift you and carry you." A tear drips down His face, filled with a rainbow of feelings… pain… empathy… strength… love… "All you have to do is reach out your hand and I will hold you up."


At last He holds out His hand, scarred and mangled, strong and beautiful. "It is time."

My hand is small and white as it slips into His. Strength flows from Him as we cross the span of the bridge. I cling to His hand and, together, we step onto the path.

© 2008 Amy Michelle Wiley


From "51 Ways to Encourage Chronically Ill Friends"

By Lisa Copen


“A good friend is a connection to life - a tie to the past, a road to the future, the key to sanity in a totally insane world.” ~Lois Wyse


~Understand that she lives in a constant state of making decisions for which there is no guarantee that she is making the right choice.
~Put meals in disposable containers and attach a note saying “This doesn’t need to be returned.” ~Wash his car and put a little note inside for him to find later.
~Ask, “What do you wish people understood about your illness?”
~Don’t make her feel guilty about things that she cannot do.
~Instead of saying, “I will pray for you,” say, “I’d like to pray for you right now, if that’s okay.”
~Mop the floors.
~Ask, “Do you have an errand I can run for you before coming over?”
~Ask her to do spontaneous things, like go to a concert in the park, or just for a picnic. She may be more likely to participate since she knows if it’s a good day or a bad day.
~Don’t say, “So, why aren’t you healed yet?” or “I wonder what God is trying to teach you that you just aren’t learning!”
~For a unique gift, provide brightly colored paper plates, napkins, and utensils in a gift bag with a note that says “For when you don’t feel like doing dishes.”
~Be her advocate. If you are at an event and walking/seating is an issue because of her disability, ask her if she’d like you to take care of it. If she says you can, be firm but not rude. ~Don’t embarrass her by making accusations of discrimination or by making a scene.
~Don’t tell her about your brother’s niece’s cousin’s best friend who tried a cure for the same illness and. . . (you know the rest).
~Ask, “What are your top three indulgences?” and then spoil her soon.
~Hold the door open for her. They are heavy!
~Ask your church youth group to come over and clean up the yard during seasonal changes.
~If your friend has a disabled parking placard and you are driving, allow her to tell you where she wants to park. If she’s feeling particularly good that day, she may not want to park in the “blue space.” Don’t be disappointed that you’ll have to walk farther.
~Accept that her chronic illness may not go away. If she’s accepting it, don’t tell her the illness is winning and she’s giving in to it.
~Don’t say, “Let me know if there is anything I can do.” People rarely feel comfortable saying, “Yes, my laundry.” Instead pick something you are willing to do and then ask her permission. Try the coupon in back!
~Don’t ask, “Why can’t the doctors help you?” or insinuate that it must be in her head. There are millions of people who are in pain with illnesses that do not have cures.
~Avoid having gifts be “pity gifts.” Just say, “I saw these flowers and their cheerfulness reminded me of you.”
~Offer to drive when we do things together.
~Ask if you can help carry anything.

Lisa Copen is the founder of National Invisible Chronic Illness Awareness Week and the author of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend, which can be found at bookstores everywhere.

Sunday, August 24, 2008

United Together

Yesterday I attended two weddings. They were each about an hour drive from home and from each other. I was worried I’d be in a ton of pain, but it wasn’t too bad, praise God. Both weddings were beautiful outdoor ceremonies. It rained all week and cleared up just the day before.

The first wedding was a classmate’s. She had a sweet ceremony, set looking out over the Columbia River Gorge. I didn’t know she was religious, but it was a strongly Christian wedding, much to the challenge of the sign language interpreter (a classmate from my first year who recently graduated), LOL. She did a great job, though.

One thing the pastor at that wedding said really stuck with me. He said, “Marriage isn’t about finding the perfect mate--it’s about becoming the perfect mate.” How true that is. In this culture of high-speed marriages that seem to end almost before they start, so many forget that it is a commitment that takes work, but reaps in joy.

The second wedding was a long-time friend. Her mom and my mom were roommates in college and our families are still good friends, though we don’t see them often. It was great to see other long-time friends that were also there, and reconnect a little.

It’s funny, mostly I’m quite content right now being single, or even with the thought that I may never get married. But there’s something about attending weddings that awakens a bit of longing in me. Ah well, God’s timing. I decided I should keep a little notebook with all the things I like from each wedding so that if my day should come I can remember some helpful/cool things to incorporate.

Today we’ve had a lovely quiet day. Tammy, another FWer, flew in last night, so it’s been fun chatting with her. Shari flew back home after church today. :-( It was so much fun to have her here, and it was sweet how well she took care of me, making sure I got rest when I needed it.

This evening Tammy, SisJ, and I met David Ian to see a Christian improv acting team, a farm team (learning team) of Comedy Sportz. It was a lot of fun! We want to play some of the improv acting games at the talent show at the next FaithWriter’s conference.
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Friday, August 22, 2008

Books, signing, and pansies

Today as I was driving down a main road I saw a pansy growing out of the crack between the curb and the sidewalk. It was so bright and unexpected there in a place that normally is empty or holds only weeds, and it got me to thinking. It’s like many of us Christians, placed in a work or school environment, or even difficult health… or any challenge, where we are surrounded by hardness and weeds. We must have the bravery to bloom for our Creator, and give the world a glimpse of Him through our bright faces.

Okay, mini devo over, back to our regularly scheduled broadcast. ;-)

Yesterday Shari and Chrissy went along to my language tutor with me. They chatted to my Deaf tutor, James, and I interpreted for everyone. It was a lot of fun and great practice for me! Mostly I was able to keep up pretty well, but there were a few funny goofs. One time we couldn’t understand one particular word through Chrissy’s accent. Even James was trying to help out by lip-reading, but he guessed the word wrong, too! He found some of the names of Australian towns (like Wagga Wagga) to be amusing and kept asking if that was really the real name, haha. Then of course, there was the time I mixed up a couple of similar signs and said, “it’s naked to talk with your mouth full.”

After tutoring, we headed over to Powel’s City of Books. It’s called that for a reason. Powel’s is one of the largest used and new bookstores in the world. It’s three stories of a full city block--completely filled with books! We meandered through, drooling over cool titles, and feeling inspired just by being in the presence of so many written words. The place oozes with creativity.

I picked up Just So Stories by Rudyard Kipling (stories like “How the Leopard Got His Spots”, so that’s all right best beloved, do you see?) and a collection of short stories by James Thurber. Thurber writes the most amusing stories. My favorite, “The Secret Life of Walter Mitty,” is about a rather hen-pecked husband who has the most exciting adventures in his imagination, only to be jerked back to reality at the most exciting points.

Of course, as wonderful as Powel’s was, it’s also in downtown Portland--a town that’s on the maps for being eclectic and, well, weird. Last time I was at Powel’s a scary man followed me around, watching me. So I warned Chrissy and Shari that we needed to stick together--no wandering off alone to check another isle or getting left behind in an exciting browse. Sure enough, some guy seemed to pop up everywhere we went. We figured the three of us could take him on with a few hard-backed books as ammo, no problem. LOL

As we left the store several hours later and headed back to the parking garage, I was concentrating on ducking around a group of men smoking--hurrying past before I had an allergic reaction. Suddenly out of the corner of my eye I saw a man walk straight up to me, acting really strange. It scared me. I jerked back in alarm, only to see that it was my tutor James, laughing at me. Ha.

Today the weather finally cleared so we can see the mountains. We walked down our quarter of a mile driveway so we could see Mt. St. Helens clearly. She’s not as pretty as usual this time of year because she’s short enough that most of the snow was melted, but it’s still nice. Our neighbor’s horses were excited to see us and get some pats, too. Tonight whoever is feeling up to it is going to Portland City Fest. Luis Palau will be speaking and several popular Christian bands will be there. I'm hoping I can sit where I can see the sign language interpreters.

[edit--added after festival] Well, scratch the above sentence. Luis was a pretty good speaker, but there were so many people there it wasn't until after Luis Palau spoke that I even found the Deaf section, and there weren't any chairs. That means I had to stand for three hours. Well, I had brought a blanket, so I did sit for a few minutes, but my back and legs don't hook together right, so I can't sit on the ground very effectively and that's as painful as standing.

I'm really, really wishing I hadn't gone. I'm not sure why I didn't leave... I guess because the band I most wanted to see, Chris Tomlin, was the last event. I can be too stubborn for my own good. I'm already in a lot of pain and typically I don't feel the worst of it until the day after. Tomorrow I have to drive a bunch (another pain trigger) and sit through two weddings. Please pray the pain isn't too bad. [end addition]

Tomorrow another FaithWriter, Tammy, will be flying in to visit us. She was missing out on all the fun and decided spontaneously to come join us. We're so thrilled! She is CRAZY fun.

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Wednesday, August 20, 2008

Happy Birthday to me!

Yesterday was my twenty-sixth birthday. It’s hard to believe a year ago I was just finishing up the FaithWriters’ conference (I was one of the coordinators), and getting ready to fly for a month to Australia to care-take for a another FWer, Chrissy. This year I had another special birthday.

Chrissy and Shari (from Ohio) are here staying with my family for a week, and a few other FaithWriters from the area, Pup, Wren, and David Ian were able to visit. In the afternoon a few of us went to a wildlife preserve nearby that has a driving trail. It was a little rainy, so we didn’t see a lot of things, but it was still fun.

We saw tons of nutria (they are like a small beaver with a rat tail) close up and got to see them playing and eating. Very fun! Someone else there said they saw some albino ones, but they hid from us. We also saw lots of swallows and ducks. And, of course, every five minutes the whole ride someone pointed at me and yelled, “Look, there’s a sparrow!!” *rolls eyes*

In the evening I had the perfect birthday dinner. All of my family was there (including my nieces and brother-in-law), plus a bunch of FaithWriter friends, plus all but one of my closest “other” friends. We had a lovely dinner and then laughed our heads off playing Apples to Apples past midnight. (beware of the sharp bananas! look out for the short cows! but no worries--you’ll be ok if you have a helpful chicken.) the only thing that could have made it better would be if even more of my FW friends could have been there.

My sister AJ, Wren, Shari, Pup, Mom, SisJ, Me, David Ian, Chrissy. (my other friends had already left when this pic was taken, except for the one taking the pic--thanks Meg! and my dad was not yet back from a trip to visit his aunt.)

People keep asking me how it feels to be twenty-six. Honestly, I couldn’t say. Because of the Fibro I feel more like 80 more often than not, though it's been a little better lately. After the late birthday night (and all the late nights recently staying up for the Olympics) I was pretty done in on Tuesday. I went to my pain management class in the morning and was about to drop dead by the time I got back.

Everyone is taking good care of me, though. I walked in the front door and everyone turned to look at me. Shari said, “Amy, you look tired! Are you ok?” They sent me to go take a nap and waited an extra hour to leave for Multnomah Falls. That was enough to get me more or less okay again, and helped that Shari drove down there.

The falls were lovely. It waited to start raining until we were just leaving.

Today we’re having a rest day. Right now Chrissy, Shari, SisJ, and I are sitting in a fast food restaurant all squeezed around a table using the WiFi, haha. We’re posting pics from their visit so far and trying to find cheap airfare to fly another FWer here this weekend.


Friday, August 15, 2008

Inspiration

My first experience with acupuncture went fine. I like the lady who does it, which is nice. I’ll have to ask her more how it works, because I don’t really understand it. First I laid on my back and she stuck needles in my feet, lower legs, and one on each arm and hand, and a little disturbingly, about three in each ear.

There was a small prick as each needle went in, and then I nothing or just a faint burn (especially if I moved the muscle it was in). The ones in my ears I could feel as pressure the whole time they were in. Then I just laid there for fifteen minutes. After the allotted time, the needles were removed and discarded and I flipped to my back, where the process was repeated.

There wasn’t much pain, but I have to admit it was a tad unnerving to lay there knowing I had needles sticking out all over my body. And when my nose started itching, I didn’t dare lift a studded arm to scratch it. ;-)

All that said, it was definitely worth it and wasn’t bad at all. This weekend I seem to be able to do a little more with a little less pain, so it seems the meds and acupuncture are, indeed, helping. Praise God for that!

Tuesday was my middle sister’s birthday. She’s had a challenging year, trying to finish her biology degree with debilitating health issues. She’s worked so hard, and is almost done, but probably won’t quite finish her incomplete class in time to officially graduate in 2008.

SisJ is a wonderfully sweet, caring lady, very sensitive to the feelings and needs of those around her. I’m proud to have her as a sister and friend. It’s really nice having her back home now. Mom, Sis, and I went out to a birthday dinner at Sweet Tomatoes, our favorite restaurant--an everything-natural salad buffet with homemade soups and breads. It’s perfect for the two of us with our many food allergies.

Last night I had the opportunity to go see a presentation by Coco Roschaert, a Deaf-Blind Canadian lady who just got back from working in a school for disabled children in Nigeria. After a hiatus here, she'll be going back for another year and a half. Yesterday’s temperatures were over 100 (thankfully we only have a few days a year that hot) and we were all crowded into a little second-story room with no AC. But it was worth sitting there drenched in sweat to get to hear the stories Coco told.

Until just ten years ago many disabled babies born in Africa were left in the forest to die. Considering that, access for the disabled has come a long way, however is still far behind America. Coco’s job at the school was to find places on campus that needed improving or better accessibility.

Coco mostly uses tactile sign language to communicate. (That is, she gently rests a hand on the signer’s dominate hand to read the signs while they sign pretty much normally.) In Nigeria so few Deaf-Blind people are educated or employed that tactile signing is not well known. Instead, the people there attempted to talk to her by actually physically grabbing her hands and forcing them into the signs they wanted--very alarming and uncomfortable for her. She said the first few weeks her arms were covered with bruises.

All of her stories were very inspiring. Coco went all the way to Nigeria. And, Fibromyalgia or no, I can definitely get through the rest of school with God’s help, and face whatever else He has for me. Bring it on!
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Monday, August 11, 2008

Of movie-making and doctor-picking

Yesterday I got to be an extra in a little Christian movie, Dialtone. About twenty-five of us stood scattered in the middle of a field of waist-high grass and thistles. We wore dark shirts and stood in solemnly--after all, we were dead. ;-) They did shots of us in each section of the big field and hill, and later will compile them to make it one shot of a full field. Afterwards I even got to do a one-liner. The movie will be about 45 minutes and entered in the San Antonio Film Festival (if I remember correctly) this fall.

After the shooting, they had a bunch of equipment to pick up and carry back down the long trail to the parking area. I didn’t carry anything heavy, but I really shouldn’t have stayed to help pick up after everything else. It’s just so ingrained into me to help out--what can I say, my mom taught me well. I’m having to learn to undo some of that now that I have Fibromyalgia and trying to not let myself feel guilty for not helping with things.

I thought I was doing okay during the shoot and that evening, but today I’m paying for it. I have that flu-like ache all over my body, even my hands. I can’t quite figure how standing in a field and climbing a bit of a hill can make my hands hurt, but whatever. It was still fun and I got to mostly rest today, even if that wasn’t what I’d planned for today.

Tomorrow I’m going to an acupuncturist. Though I know it doesn’t work for everyone, I’ve heard that it helps with both pain and sleeping problems for many people. My insurance referred me, so I’ll only have a $20 co-pay each visit. The HMO sent me this list like six pages long of acupuncturists I could pick from. Yowz. I don’t know much of anything about it, so I didn’t have a clue how to go about picking someone.

Finally I just prayed that God would lead me to the right person and started calling all the females on the list who lived closest to me. I left four or five messages asking them to call me back. Then someone called me back. I asked if she’d worked with Fibromyalgia patients before.

Ha. Turns out she started working for a rheumatologist who specialized in Fibro. She did her thesis on Fibro. During her research she saw that acupuncture seemed to provide great results for people suffering from Fibro, so she decided to train to become one herself.

Um yeah, I think she knows a little about Fibromyalgia. And that was the very first lady who called back. Thank you, God!
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Sunday, August 03, 2008

Happy Birthday, Ebee!

My youngest niece is three today! It’s her golden birthday--three on the 3rd. This year has been a good one for her. The first two plus years of her life, she had some serious health issues and the poor thing spent much of her time either screaming in pain or sitting in an almost-unresponsive lump. But this year she apparently grew out of most of her severe food allergies and now is an extremely happy, and mostly healthy toddler.

Ebee has the most delightful deep belly-laugh chuckle, so unexpected in such a little girl. She’s very easily amused and the contagious chuckle comes rolling out often through the day. Earlier this summer my whole family, nieces and BIL included, got to spend the week together at the beach. Though I was having a bad Fibromyalgia flare at the time, I could always count on Ebee to make me laugh, my middle niece M&M to give me a cuddle, and my oldest niece AJ to do what she could to help.

The three-year-old is now a very hardy little girl--not much phases her and she bounces up from her frequent toddler tumbles with a quick, “I’m o-tay!” My guess is that all the pain she experienced in her early life makes the little bumps no big deal.

I can’t wait to see how God continues to mold her into a young lady with a heart after Him. Happy Birthday, Ebee!!
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Friday, August 01, 2008

Diagnosis: Fibromyalgia

Yesterday I had an appointment with a specialist who actually diagnosed me--finally. As I suspected, I have Fibromyalgia. The doctor listened to and questioned me for over an hour, and then poked and prodded me all over, testing reflexes, muscle strength, and pressure points. I've been wanting someone to do that for a while now, so I'm glad to finally have found a doctor who did.

As many of you know, the pressure points are 18 places on your body where, if pressure is applied, most people feel just that--pressure. Fibromyalgia people, however, feel intense pain. You have to be sensitive in at least 11 points in order to get diagnosed with Fibro. I yelped, gasped, or cried on about 16 or 17 of the spots. The poor doctor kept saying, "So sorry to put you through this. Your body didn't like that one. Oh, even I felt that! (when a muscle spasmed in response to his thumb)" The pain goes mostly away when the pressure is released, but today I feel rather as though I got beat up.

When he was done he declared that I undoubtedly have Fibromyalgia. He did some blood tests to make sure I don't have any other rheumatic diseases, but all of them came back fine (though my RH factor was the highest normal number).

I have mixed feelings about the diagnosis. Even though I didn't think I had something more serious (like MS or Lupus), it's nice to know for sure. Knowing exactly what's wrong also makes treatment easier. But the diagnosis also means a lifetime of pain and fatigue that may get less at times, but will never go away.

I feel sad, but mostly I'm just ready to move on with learning how to live as full a life as possible. I kind of already went through a mourning stage a few months ago. I've had some health problems all my life, but more serious ones the last eight years or so. During that time, I saw several naturopaths who found various problems and began working to help them. I would get better for a while, and then something else would come up that we'd begin working on. I had a couple of years when I seemed to be getting and staying better.

Then last year, even though I was under less stress and was only taking a few college classes, I started getting markedly worse. The general tiredness became almost debilitating fatigue at times, my sleep was getting worse, my brain function was declining (my friends started calling me Blondie) and a few months ago the pain that has always come and gone moved in with all it's bags and furniture.

At that point, I began realizing that while I will have better times, this isn't going to go away. It's going to be there, interfering with my writing, my social life, my interpreting...even a future life with husband and kids. So yes, there was a time of mourning. A time of asking God why. But then, with His strength, I began moving on...changing my thinking from "How can I fix this?" to "How can I live the best with this?" It means the difference between sitting around waiting until I'm better, or embracing life how I am, where I am.

So this diagnoses is another step along that road--a big step, because knowing what's wrong goes a long ways in helping me and my doctors learn ways to minimize the impact.
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Sunday, July 27, 2008

Happily Ever After

The production went awesomely today. Everything just fell together and all the students did the best they’ve done so far, with very few glitches. I was so proud of them! It went great for us voice actors, too. I definitely want to volunteer again next year if I can.

It was funny, as the dress rehearsals started this morning, I couldn’t find my notebook with my scripts anywhere. I ran to my “boss’s” office and checked there, and then ran across campus to check my car. I was half-way there when I remembered it wasn’t my car--I’d carpooled with a friend. So I slipped back in the auditorium and got her keys and ran back to the parking lot. That is, almost to the parking lot. The campus gate was still locked and I couldn’t get out! So yes, I hurry back, again, and found a teacher who loaned me her key card and went back to the car. No notebook. I must have left it in my car and forgot to transfer it to my friend’s.

I decided I could get along without my script and could peek over a teammate’s shoulder if I needed to. (we each were three or four characters in each play, so we can’t completely memorize the lines in the four days we had). Since I knew my lines pretty well I discovered it actually went better without my notes. Then I could just concentrate on following the actors and their ad libbing, etc, and juggling the mic at the right times.

Naturally, right before the actual presentation, my friend found my notebook--in the office where I’d looked first. *rolls eyes* Oh well, it ended up being for the best. :-p

In between each of the five skits, some of the high school students decided to tell stories so the audience didn't have to just sit there waiting for the props to be set up. It was kinda last minute--they decided the day before the production, but thankfully we on the voicing team got the chance to practice with them. The story I was voicing for was a classic Deaf joke I knew, so that made it easier.

As my friend and I were driving to the school this morning, I was practicing telling her the story. I'm infamously behind the times on current slang, but I felt like the casual story needed some slang for "he started speeding." I tried, "he was going along at a pretty good clip." My friend looked at me. "Amy, no one says that." I protested, "I do." She laughed. Everything I came up with met the same reaction. In the end, I just said, "he started speeding." LOL

We got some pictures of our voicing team, but I forgot to ask permission to post one here. Sorry. I looked at the picture and shook my head. "I look awfully young today." Everyone looked at me. "Today? You always look young." Yeah, yeah. I looked about the same age as the teenager student that was on our voicing team. I'm in my mid twenties and (I'm not exagerating), people ask me what grade of high school I'm in all the time. Oh well, I know it'll be handy later, but it'll be nice when I at least stop looking like a teen. ;-)

This evening I was hosting the monthly Homeschool Alumni NW game night. I ended up getting home late and the first guests had already arrived. Good thing my family was home to let them in! We had a great time at the game night and I even managed to be more or less alert despite my busy week. After some English Country Dancing on our driveway, hehe, we played Dutch Blitz with a twist! Since it was a large crowd, we were playing three different games of it. So someone suggested we play it like Bunco--with the losers and winners moving up or down a table each round. That was cool!

Friday, July 25, 2008

I present to you...!

Wow, these have been a busy two days. Yesterday I put in about an eleven hour day, volunteering the in the classrooms (8:00 AM to 3:00 PM) and then four hours that evening just working on our voice acting. Then my aunt from Indonesia was here when I got home at 9:30ish, so of course I stayed up chatting with her. I was so glad I got home in time to see her.

Yesterday I was pleased with how well it went voicing for the girl I was working with (I mentioned her in my last post). I occasionally had trouble following the other teens' chatter, but that can be difficult even if it's in your first language. ;-) I'm pleased with how much my receptive skills have improved this year. Even though I'm not technically interpreting, it's awesome practice and gives me experience seeing the kinds of things you have to deal with in an actual classroom.

When I first entered one of the classrooms, the teacher suggested a job I could help with, but I didn't know much about that. Then she mentioned that one of the students was trying to learn to juggle for his role in the play. Now that I could help with! He had already figured out the basics and was juggling pretty well already, though, so I just gave him a few tips.

Today our voice team spent the whole day sitting in the auditorium, practicing the voice acting as the actors went through their skits. Even though the school owns about eight microphones, they somehow lost all but one of the cords. So four of us are trying to juggle a mic back and forth as we're voicing rapid dialog. That's...interesting. Especially since handling the mic creates a pretty loud rustling noise. But hey, we're making it work. Between the weird seats and all the twisting, it's been a bit hard on my back and another lady's.

Man, the Deaf actor who is advising and helping direct all the plays is being run ragged. He's scheduled to be with a class pretty much every minute of the day, all day. Poor guy has been working non-stop for a week and a half at this camp, then he gets about a day and a half of a break and another kind of camp starts up. He's a great teacher and in high demand. He was one of my favorite teachers in college last year.

Picking the different voices for the characters is fun. My favorite of my roles is in "The Emperor's New Wig." One of my roles is the "invisible wig" maker. I have a script with lines that are written in sort of half English/half ASL, so I have to translate them a little and have fun coming up with something that matches the character. "I present to you an exquisite wig, visible to only the most brilliant among you. Those who are fools see nothing!"

Another fun role, but also one of the most challenging, is a rejected princess in "The Princess and the Pea." She's French and the script has her written with an outrageous personality, so I've been attempting a French accent as I go all out with the performance. I was a bit taken-aback when the actor came out. (I hadn't gotten to see that part of the performance yet.) She is a very understated actor, so now I'm trying to tweak my voice to make it match her affect better.

Tomorrow will be similar to today. There is a dress rehearsal in the morning, a BBQ, and then the production! Despite the challenges, I've been having so much fun, and it's been a valuable learning experience.

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Wednesday, July 23, 2008

Adventures with the MooLoo herd

I wasn’t going to post today, but since ya’ll are enjoying my camp adventures and requested more, I guess I will. ;-) Today I worked in the 5th and 6th grade class in the morning and that was almost more challenging than the younger kids. Almost half of the ten kids in that class have learning problems, or at least attention problems. They are all great kids, though, and their play, “The Emperor’s New Wig” (lol, they figured a kid running around acting that he was bald was better than acting that he was naked) is coming along nicely.

In one scene, when the Emperor is parading down the street in his invisible “wig,” all the townspeople are ooing and awing. In the skit the teacher is having them stand in a line and have a ripple of comments move down the line as the Emperor walks along it. It was a challenge for the kids to say their line smoothly, without long pauses as they realized it was their turn, so we spent part of the day practicing rhythmic turn-taking games like clapping games. It was cool to see them improve throughout the day until they could do it smoothly.

This morning a Deaf-Blind woman visiting the area from Seattle came by and spent a little time in each of the classrooms, explaining a little about life as a Deaf-Blind person and letting the kids ask questions. I’ve gotten to meet Deaf-Blind people a few times before, but not often, so it was a great learning experience for all of us.

The woman explained how, just as each Deaf person has a different level of hearing loss, so does each Deaf-Blind person have varying levels of hearing and vision. This lady has Usher’s Syndrome--a hereditary disease that results in the person being born deaf and then gradually getting tunnel vision that grows smaller and smaller throughout young adulthood. She gave us a glimpse of what life is like for her by having us roll up a piece of paper into a tight tube and then look through it with one eye.

Depending on their visibility issues, different communication methods are used for the Deaf-Blind. Some can see signing, but need tight signs in a very small area, or very close to their face. Some even need it far away, perhaps on the other side of the room, in order to see it best. This lady, and most of the Deaf-Blind people I’ve met, used tactile signing. She had two aids who took fifteen minute turns feeding her signs and visual information. She would lay a hand gently over her helper’s dominate hand, and he would sign pretty much normally. When a student asked a question, he would indicate their raised hand and point in the direction of the child. She’d motion for the student to go ahead and then the aid would copy-sign (repeat) all the child’s signs so she could feel them.

In the afternoon I was an aid for a young lady student who is loosing her hearing and starting to learn sign language. Since she can still hear quite well, but doesn’t know much sign, I was voicing the signing and such so she could follow along with what was going on in her high school class. During the time I was there the class was practicing on the real stage, so it was a challenge to be able to see what all was going on, not get in the way of the other actors, but still be close enough to her so she could hear me. Often actors had their back to me, and I haven’t quite learned the art of x-ray vision yet, to see through their backs to their hands. ;-) She was easy-going and content with whatever I could tell her, so that made it stress-free.

Mostly she was enjoying playing with her character’s imaginary herd of cattle. ;-) They were following her all over campus, you understand, and she had to watch out that no one stepped on them. They are miniature MooLoo cows--about a foot tall with purple bodies and pink hearts on their chests. They’ve been in the bovine military, so they were quite orderly and well-behaved, until they got hungry (then they went kinda crazy and started eating people’s shoes. Note to self: beware of hungry MooLoo cattle!).

I spent most of the day standing, so my feet are pretty sore and my ankle and wrist joints have been complaining (goes along with fibromyalgia, I think), but I can tell ya’ll are praying for me because I’ve been holding up remarkably well, at least until I can crash at home. The week is going by so fast!

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Tuesday, July 22, 2008

Shhh, I'm a Secret

Today I only got to spend a half a day in the classroom at the Deaf camp, because I had a pain management class in the morning. I was needing it pretty badly at that point, too, after yesterday. I had just as much fun in the 1st and 2nd grade room today, though. Last night I put together a script from everything they’d been working on.

Right before the teacher handed out the scripts, she told the kids I’d written it up for them and pointed to me, asking them who I was. The kids responded enthusiastically with my name or name sign…that is, kinda my name sign. The teacher turned to me with a puzzled look. “Your name sign is secret?” I laughed and showed her the real one--similar to the sign for “secret,” though I’d never noticed that before. My name is so short everyone just fingerspells it--this is the first time I’ve had people regularly use my name sign.

The teacher I’ve been working with was asked to teach here only the day before camp started--the one scheduled had something come up. This lady normally teaches older kids and has never taught drama before. She’s doing a great job and is great with the kids.

I got to try out teaching just a little today, too! Since I’ve had a little experience with drama (though not teaching it to kids), the teacher asked me to take the floor a little more today. It was so much fun but a challenge, too. There’s nothing that makes one feel as if she’s signing pig latin quite like trying to explain a complicated concept to kids who aren’t that interested in the first place. ;-)

Imagine trying to keep the attention of nine 1st and 2nd graders sitting in a circle. Most of them spend most of the time fiddling around and playing with a piece of paper or tag on their shirt or whatnot, right? but they can still listen to the teacher. Now picture the same circle of kids, but all of them are deaf. It’s the same situation, with one twist--the kids only know what the teacher is saying if they are actually looking at her. This is a real challenge for the kids that can pay attention better if they can move around and be active while they are learning.

I tried to think of some fun acting games we could play and have the kids “put on” the personalities of the characters from their skit, but we ran out of time to do much. I did have them think about how their character would walk (or swim--we’re doing “The Little Mermaid”) and practice that a bit. That was fun!

Another funny thing happened today. At one point the teacher put three bits of masking tape on the floor to help the young actors know where to stand. She was a bit puzzled, though, when instead of facing the audience, the kids stood stiffly and precisely facing odd random directions. She finally realized that instead of just standing on the tape marks, they’d lined their feet up exactly parallel to the direction the tape strip happened to be facing.

Tomorrow I’m moving to another classroom. It’s good to get a variety of experience, and seeing all the classrooms will help prepare me for voice acting the plays on Saturday. I’m gonna miss this class, though! I’m suddenly wondering if I’ll end up as a teacher’s aid at this school after I graduate. ;-)

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Monday, July 21, 2008

Acceptance

This week I’m volunteering at a Literacy Faire camp for Deaf kids. The kids are in five groups, each studying and then performing an adapted story of Hans Christian Anderson. I’m on a voice acting team, which means when the kids act in ASL, we’ll be reading the script out loud in English so non-signers can follow along.

I love doing dramatic readings and playing around with different voices, so this is extra fun because I also get to be working with sign language and kids, too. Besides preparing for voice acting, we’re helping out in the classrooms as much as we can.

Today I worked with the 1st and 2nd graders. That’s such a fun age! The kids are old enough to go to the bathroom themselves, hehe, but not so old they have massive chips on their shoulders. They are so accepting of everyone at that age. We have nine kids in a wide range of signing levels, ethnic backgrounds, and a pretty even mix of boys and girls, including one with some medical issues. For a minute I thought I might have a problem when one asked if I was Deaf or hearing and was rather shocked at my answer. “Hearing people aren’t allowed!” but they quickly seemed to forget my “shortcoming”, and accepted me fine.

My back pain mostly stayed under control, despite the toddler-sized chairs and tables. I’d love prayer that I can continue the week without problems. A couple of the kids were sick, too, so hopefully no one else will get it.

I’ve just finished writing the rough draft of that classroom’s script, and Thursday we should have all of them ready. Then we’ll be able to start playing around with voices and practicing for the voice acting!

I think I’d enjoy teaching…as long as I didn’t have to sit in pee wee chairs all day every day! :-p

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My Mountain

Laury lovingly teased Mari and I for how we talk in possessives about our beloved Northwest. I can see "my mountain" (Mt. St. Helens) from my bedroom window, and I cherish being surrounded by "my foothills." The last Sunday Laury was here the four of us--Laury, Marita, SisJ, and I--drove up to Mt. St. Helens.

We didn't make it all the way up to the Johnston Observatory, which is the place with the best view and the cool seismograph, plus videos and info stuff about the 1980 eruption. But we did go to a lower observatory and saw some cool stuff like a chart that explained how the eruption forced the sound waves so high up that there was miles and miles of a "silent zone" around the mountain before the sound waves came back down as far away as Seattle. We got a pretty good view of my mountain, too, though there wasn't much pretty snow left on it.

We asked someone to take a pic of all four of us, but it was a teen boy and he half-heartedly snapped on picture and handed the camera back. Not surprisingly, that picture didn't turn out, so you'll just have to imagine Marita in this picture. ;-)



Saturday, July 19, 2008

Gull-able

Here’s a belated entry about the lovely weekend when Laury was here last week.

It started with a dandelion. Apparently only one kind of dandelion grows in Illinois, and Laury was incredulous that the almost-dainty-looking blooms with the small circlet of pedals balancing on tall stems were, indeed, dandelions. We finally convinced her and she rushed along to each of the flowers in our field, eager to see what other treasures the Northwest had to offer. “The Pacific Northwest is like a completely different country!”

“You know,” Marita joked, “We could tell her anything and she’d believe us.”

I grinned. “Yeah, see that, Laury?” I pointed to a pile of rocks. “That’s the rare….umm…Jubjub flower.” Mari and I laughed.

Laury spotted a flower on the other side of the rocks and peered at it. “Really? That white one?”

We laughed harder and she looked around in puzzlement before she realized I was pulling her leg. From then on whenever she asked a question I didn’t know, I would make up a silly answer (typical for me, anyhow ;-) ). And from then on, if Marita or I gave her a true answer, she would say doubtfully, “huh uh.” but if it was a made up answer she would gasp, “Really?!” Kinda backwards…so of course I had to tease her more. And of course she teased me back just as hard. ;-) We pretty much laughed the entire weekend--it was so fun.

Here’s a bunch of random silly pictures and the stories to go along with them:

< Laury and I giggling with our laptops during the sleepover at Marita's house.



>>I'm not singing--really. Mari caught me in action as I was telling a story. And to think, some people believe I'm quiet and shy!




Saturday Mari and Laury and I drove to Seaside, OR. It was a lovely day--not too hot and not too cold. It was the first time Laury had ever seen the ocean. We splashed in the cold waves a bit and then settled down to eat our lunch. As always, seagulls flocked around, eager to find any bit of food. Marita and I pretty much ignored them, but Laury was enjoying them and snapped some pictures. Then...out of the corner of our eyes... Marita and I saw Laury start to toss a bit of bread to a bird. Mari lunged for her, yelling, "No!"
It was too late. The bread fell to the beach and the entire Northwest population of seagulls made a dive. Straight for us. One bird gulped up the bread. The others made a circle around us. The three of us humans in the middle huddled closer together. "Rule number one." Mari and I told Laury. "Never, never, EVER, feed the seagulls."

The circle tightened. The birds didn't make a sound, just stared at us with menacing dark eyes. You could just see the "Mine? Mine? Mine?" thought bubbles hovering over their heads as they watched us eat.

Finally someone else made the fatal mistake and the birds flew to gobble up someone else's lunch. All but one bird, that is. Perhaps it was the one, and only one, who had gotten the piece of bread Laury threw, but it stuck close to us the rest of the day. In fact, Laury started calling it our guard-gull and you can see it in the background of the above picture.




< Two dizzy people trying to hold each other up doesn't work so well. "I'm not dizzy." I tried protesting. "I just...sorta...loose my balance sometimes."

"Hon," Laury patted my arm, "that's called dizzy."




>>Mari and Laury had never heard of drip castles, so of course I had to demonstrate the fine art, as taught to me by my dad. True
to my life as a "kid magnet," I had no sooner started when two little boys rushed over to see what I was doing. I showed them how to scoop up a handful of wet sand and let it dribble through your fingers to form a bumpy, almost-spooky-looking castle. The younger boy discovered that his hands were dirty halfway through the first drip, and rushed off to wash them (doubly funny because I used to do that during mud pie making when I was that age, too), but the older boy and I had fun making our castles.

Friday, July 11, 2008

Sand Bubbles

Laury, a FaithWriter from Illinois, flew to visit Marita, Janelle, and I this week. We talk on IM and the phone all the time, so it didn't really feel like meeting her for the first time. It's been so much fun to laugh and tease in person, though. The three of us have sore cheeks from laughing so much. Both Laury and my pain levels are much lower than they've been for a while.

Marita lives right on the Columbia River, a couple of hours northwest of me, and today I drove to stay the night at her house with her and Laury. Mari's family is out of town, so it's just the three of us giggling away as we please. As I type this, we're watching a movie. Mari says she's never going to watch one with the two of us again. LOL ;-) I thought I was bad about talking during movies...Laury's even worse, ha.

After dinner today we went wading in the slough where the river is very shallow and lazy. The sun was slipping below the horizon--just an orange glow lighting the tops of the foothills and casting a silver sheen over the rippling water. The tide was up, and that created a fascinating phenomena with the sand--I've never met sand that acted quite like that. As you stepped into it, the sand sunk down a few inches, releasing a cascade of burbling bubbles that massaged our feet with every step. As the sky darkened, tiny fish jumped from the water, catching their dinner in glistening streaks.

Sunday, July 06, 2008

An Open Book (a meme)

Joanne tagged me with this fun meme:



1. Do you remember how you developed a love for reading?
This is my all-time favorite picture of myself--pretending to read to my baby-doll before I was old enough to really read. I know my mom and older sisters were huge readers, so I’m sure that played into my love for reading. It goes back several generations--both my mom and my grandma used to get in trouble for reading after they were suppose to be asleep, and my sisters and I followed right in their tracks!


2. What are some books you read as a child?
I’m told my favorite book as a young child was Marvin K. Mooney will you please go NOW! by Dr. Suess. To this day I still have parts of it memorized, ha. Oddly, I didn’t like most of the other Suess books.

As I got a little older I loved mystery and historical fiction books, especially if they were combined. I read a lot of the TrailBlazer books by Dave and Neta Jackson (each book told the story of a famous missionary told from the view-point of a fictional child) and enjoyed the Sugar Creek Gang and Robert Elmer’s historical adventures. And yes, I read the Hardy Boys and some of the older Nancy Drew books. Another favorite series is the PepperMint Gang--they are now out of print but are fiction stories based on the life of a missionary kid in South America. They were especially fun because my dad remembers some of the events and characters in the books from his own childhood in South America.


3. What is your favorite genre?
I read pretty much any genre if it’s well-written and clean. I guess historical fiction and adventure are still my favorites, though.


4. Do you have a favorite novel?
Nope, sorry. I can’t even pick one favorite author--too many good ones.


5. Where do you usually read?
Where ever I get the chance. Lately most of my pleasure reading has been in bed right before I sleep.


6. When do you usually read?
Right now primarily in the summer because I'm in college.


7. Do you usually have more than one book you are reading at a time?
Often, yes. Sometimes I’ll have one book downstairs and one or two upstairs.


8. Do you read nonfiction in a different way or place than you read fiction?
Honestly I don’t read a lot of non-fiction. Most of what I read is for school so yes, I try to take notes as I read. I also have always had the habit of sharing interesting tidbits with my family as I read non-fiction. This can be rather annoying at times, I’m sure (especially during the home schooling years when everyone else was trying to do their own school!), but I love sharing cool facts and it probably helps me remember them, too.


9. Do you buy most of the books you read, or borrow them, or check them out of the library?
All of the above. I have a little bookcase in my room that goes half-way up the wall and it’s overflowing… Most of the books I own were either gifts or ones I found at discount or second-hand stores. My mom has six floor-to-ceiling bookcases that are full--many of them double-stacked.


10. Do you keep most of the books you buy? If not, what do you do with them?
Pretty much the only reason I would get rid of a book is if it wasn’t a good book. Then I either toss it or sell it, depending on how and why it was bad. I do have some old schoolbooks (from college) I’m planning to sell, though honestly I have a hard time parting even with those!


11. If you have children, what are some of the favorite books you have shared with them? Were they some of the same ones you read as a child?
No children, but my nieces come over to borrow from “Grandma’s Library” often and are reading some of my favorites. :-)


12. What are you reading now?
I have been reading a lot this summer--making up for all the reading I didn’t do during the school year, I guess. I think I read eight or nine novels the last two weeks, (but a few of them were E.B. White children’s books). I think my favorite was a book called In Search of Eden by Linda Nichols. It was about a lady who had given up a child for adoption when she was a teen. Another good one was Abraham’s Well by Sharon Ewell Foster. It was a historical fiction about Black Cherokees during the Trail of Tears.


13. Do you keep a TBR (to be read) list?
Not really.


14. What’s next?
I found a couple of books I haven’t read when I was cleaning this week--a novel by Elizabeth Elliot and a non-fiction about a horse ranch for troubled kids. I’d also like to find a non-fiction book someone recommended to me, Pain: the gift no one wants.


15. What books would you like to reread?
I eventually reread pretty much all the books we own. Sometimes the mysteries aren’t as fun to reread because it’s missing something when you already know the secrets, but other times it’s fun to see the clues you missed the first time.


16. Who are your favorite authors?
Stephanie Grace Whitson, Jamie Langston Turner, Dee Henderson, some of Ted Dekker, A.A. Milnes (I love the way he uses capitalization for emphasis), Lewis Carroll, to name a few off the top of my head.


If anyone else would like to do this meme, let me know to look for it by posting here! :-)

Wednesday, June 25, 2008

Broken Seashell Thoughts

A wave slips around my toes, the kiss of cold foam stirring the sand, revealing a glint of pearly pink. I bend and pick up the shell, just a fragment, the swirled design cut short by ragged edges. It’s been crushed by the waves, ground by the sand, yet I admire it and slip it into my bucket with the others I’ve collected.

The bright bottom of the plastic castle-shaped bucket is filled with shell pieces of all shapes and sizes, the few rare purples standing out in dark contrast to the pale tans and pinks. All of them are beautiful. All of them give a glimpse of the once-whole home that was so carefully built to house the various creatures. I’ll make something pretty with these pieces… I’ll make them into a whole.

It occurred to me that we are like those shells. The world has crushed us and battered us. Perhaps we have a few sharp edges, or ragged tears. We’ve given part of ourselves to the world, and contributed to its change, perhaps just as subtly as the few grains of sand each shell adds to the beach around it. We’re broken, and lie in the midst of the busy world, sometimes feeling useless and forgotten, buried in the sands of time.

Then He comes. Our Heavenly Father scoops us up, just like I picked up that broken shell. He sees a reflection of Himself as the Creator in the colors that curl across the hard surface, in the emotions that swirl in our hearts. He sees what we once were, what we would have been had we not been marred by the sin of the world. He knows what we will be, when we are whole once again--perfect and untarnished.

Most of all, He loves. He sees beauty in our broken offerings, lifts us in His hands, and puts us safely into His kingdom, His castle. He has chosen us. We have accepted Him. Nothing we can do can change the way He sees us, because He sees us whole, redeemed, His own precious shell. His child.



These are my reflections today, as I wandered the beaches. My family is vacationing for a glorious week. I’ve been in a lot of pain and nausea, but still I find grace. I have time to relax (as much as possible) and read, book after book. I can gaze out the window and watch the sunset over the waves right from my bed. Even now as I type I see the golden-crested waves slowly giving way to the deep blue of dusk. The royal blue that fills my soul and touches my heart with a beauty only a Creator could give.

This week I listen to my nieces giggle over the wonders of the ocean, and reach for lots of wet hugs and sandy snuggles. My family gathers together, playing games, talking walks, being together. My sister and I lie awake, pain chasing the sleep far from our eyes, and we talk and giggle long into the wee hours of the mornings.

All of us crowd together to peer at the odd spectacle of a piranha stretched dying on the shore, far from his native waters, showing sharp lines of jagged teeth as he gasps for breath. We rush to the window to spot the huge crabs that line the beach, count the seventeen pelicans that fly above, or squint to catch a glimpse of the otters that play just below the water’s surface.

Yes, there are times I can’t walk much because I feel too sick, or times I can’t play much because it hurts too bad. But even in those times I know beauty and love, from my family and from God. And, as I watch the sun dance on the tips of the waves like glittering paths of live embers, I know all is well. For broken as I am, I’m secure in the Creator’s hand. He sees beauty, and I love in return.


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Thursday, June 12, 2008

Fish!!

I did it! I made it through the first year of the interpreting program still alive and with okay grades in all my classes. ;-) It feels so nice to have it done. This summer I’ll be working hard to improve my interpreting even more so I’m ready to meet the challenge of the second year head on.

My finals went pretty well, thanks to everyone’s prayers. By the last day of my busiest week, I was definitely worn out and not at my highest potential, but even so made it through with an okay grade. Now my classmates and I are celebrating with a couple of parties this week. Then it’s back to practicing every day!

As though the word is out that I’m done with school, I’m already starting to get more editing and critiquing projects again, and even got my first paid one! This summer I’ll be dusting off a lot of my old stories and a few poems and submitting them to magazines, as well as doing some new writing. My goal is to finish editing the postcard project, also, and have that ready for the editor at least by the end of the summer.

This week I got referred to pain management classes and to another kind of sleep clinic. They will both start next month and be weekly appointments for a few weeks. I’m sure they will cover a lot of information I know, but hopefully I’ll learn some new things as well, and can take some steps to get healthier this summer so I’ll be more equipped for school next fall. The next term in October will probably be the most challenging yet. I’m hoping someone will actually diagnose me with something. It seems odd to me that my doctor is referring me to this stuff but hasn’t done much to verify what is causing the pain and sleep problems.

The end of this month my family is going to the beach. All of us are going together this time--my parents, two sisters, brother-in-law, and my three nieces. It’ll be fun! I plan to do some reading and writing as well as lots of playing with the little ones.



*”Fish” is the mouth-shape made while signing FINISH. It’s become a joke among my classmates and one of our teachers so now it’s not uncommon to hear someone to ask in English “You fish?” instead of “Are you finished?” or to actually sign FISH instead of FINISH. LOL

Sunday, May 25, 2008

Learning to Live

I’m still learning how to live. Learning how to not get mad when my body doesn’t let me be me. There are days I can do it… days I accept that I can’t do everything. The days I make the most of what I can do, and know that even if I can’t do it today, I might be able to do more tomorrow, or next week, and if I can't, then that's okay, too.

Then there are the days I forget. The days I make plans to live my life the way I want to live. To do things and go places! Then just as I’m walking out the door, it slaps me in the face. Maybe it’s pain, maybe it’s nausea, maybe it’s the overwhelming fatigue that saps every bit of energy. Or maybe it’s just remembering. Remembering that I can’t do things because I want to do things, or even because I need to do things. Remembering that I can only do things if I can do things.

I’ve been focusing too much on what I can’t do. This week I was trying to think about all the things I can still do. But seems like that backfires. I start forgetting that I have to be careful… I overdo it or make grand plans only to get sick or realize I can’t after all.

Last week one of my teachers suggested I go volunteer at a camp for Deaf Blind adults in Seattle this summer. It’s a wonderful experience and they desperately need more volunteers, she explained. I asked my language tutor about it during group tutoring, and he too raved about how fun it was, and how it would build our skills while helping others. “It would be a great experience for you all,” he told us, looking at my classmates.

Then came the slap.

“But Amy,” he looked at me, “I don’t think you could do it. It’s long hours, hard work. It would be too much for you, I think.”

I got mad then. Not mad at him--it was sweet of him to be watching out for me--but mad that I need to be watched out for. Mad that I can’t do what I want to do…even what I need to do to build my skills. My learning disabilities mean I need even more practice and work than the teachers recommend, but my health means some days I can’t even manage the minimum requirements.

So here I am again, back where I started. Learning to accept the life I’ve been dealt. Learning to live life to the fullest when full isn’t always very big. But most of all I need to remember the things I’ve already learned. The things like how God will use my health problems to make me lean on Him. How He’ll use them for His glory, to let me encourage others because I can understand a little of what they go through. And how when I do succeed, everyone knows it’s because of Him, not because of me.

I recently wrote a short story with this same lesson: When a Lifetime Comes. It’s a lesson that keeps coming back for those of us with health problems, one that somehow never fully gets learned. But step by step, we grow a little more every day, becoming more like the person God is molding us to be.

Life isn’t about how much you can do. Life is about how you do what you do… how you choose to live the life you have. May I have the grace to live completely.


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