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.

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.

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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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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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.

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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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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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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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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