A2Z Take Two: Returning with Ragman

I’m back! In February my shoulder collapsed and had me almost bed-bound with pain. Due to my disease and a number of factors that aggravated it, some of the muscles in the back apparently gave up, so any time I was other than flat on my back, it felt like my shoulder was being ripped off with a burning chainsaw.

Eventually God brought me to the right kind of therapy and it’s finally a little better now. However, I’m still having quite a bit more pain than before, mostly in the shoulder but everywhere else, too (since I needed one more chronic thing), especially when driving. I’ve had to lower my interpreting hours at work to only four a week until they invent hovers that can be programed to deliver me automatically to work while I sleep in the back, or until my shoulder decides to behave differently—whichever comes first.

At any rate, I’m trying to catch back up with life again, including my blog. One of the first things I did when I was a little better was recorded myself performing “The Ragman” in ASL and then putting on English captions. It’s such a wonderful story that I just had to try it myself. So here’s a video of that for you. (and you can probably see how much lower my right shoulder is.) To turn on the captions click on the red CC button.

I also finally got my novel, Reaching Sky, back from my last beta reader and have sent it off for a final edit and proof read. Whew! A year and a half for a first book isn’t too bad. I can’t wait to see what the publisher says, but guess I’ll have to wait, since I haven’t even sent it in yet….

When I graduated and started doing more interpreting a few years ago, then I stopped doing much freelance editing. Well, now that I’ve had to lower my interpreting hours, it seems like God is bringing me back into editing. I have a few small jobs coming up and may be getting hired to do a big rewrite of a project to help give it more of a story feel.

Oh and guess what? many of you know the situation about how the FDIC (by proxy of a big builder) is suing my parents for all their land, retirement savings, vehicles, and forced us to move to a smaller place, through no fault of our own. Hundreds of other builders all over the U.S. are in the same situation and finally we made enough noise that the senate is setting up a hearing to review the issue on May 16th. Please pray they are able to see clearly and bring justice.

Check out more "R" posts in the A2Z meme at www.pattywysong.com and feel free to jump right in and blog with us next week for S.

A 2 Z: Queen of the Universe! Or not....

This week is National Invisible Chronic Illness Awareness week about spreading awareness of diseases and conditions like Fibromyalgia, Lupus, Multiple Sclerosis, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Chronic Lyme Disease, Rheumatoid Arthritis, Ehlers-Danlos Syndrome and many others. For my "Q" post I'd like to answer some common questions and comments I get about my own life living with invisible chronic illnesses. Feel free to skim or jump to the ones that look the most interesting if you don't have time to read them all. I've included website links to helpful resources, as well.

But you look so normal and healthy! Yes, that's why it's called an "invisible" illness. The most common symptoms of these types of illnesses are things not easily visible like pain, fatigue, and cognitive problems (brain fog).... Please don't assume that if I look normal and if I'm smiling, then that means I'm feeling perfectly awesome.

www.butyoudontlooksick.com

Aren't you too young to have all these health problems? It's actually quite common for many of these conditions to develop in the early twenties, or even younger. Others are genetic issues that are present from birth. It can be difficult for those of us assumed to be in the prime of our lives to be so limited in work and pleasure activities. We often find we have a lifestyle more in common with people of our grandparents' generation than of our own.

www.healkick.com (social networking site for young adults with chronic illnesses)

How do you accomplish so much if you are that sick? Honestly, I feel like there is so much more I want to do that I haven't been able to. Someone (Cori) once said of me that I could take over the world if I wanted--sometimes I jokingly wonder if this is my "handicap" to keep me from dominating the known universe! haha! But to be serious, I do have to spend a majority of every week resting in bed or on my recliner couch. Sometimes I'm able to do writing or other computer-related tasks while resting, by using my laptop on a special bench my dad built to take the heat and pressure off my legs. Other times I'm too worn out to even do that. So I guess my answer would be that my projects get done eventually out of pure determination to keep working at it in the little bits of time when I can.

What controls your symptoms? I have dietary limitations and some prescriptions and supplements that help slightly, but the only thing I've found that significantly decreases my symptoms is getting lots of rest. I can do very little housework or cooking and I work under ten hours a week with lots of breaks.

What's the hardest thing about living with these conditions? I have to consider each and every thing I do carefully to determine how much of my energy it'll use up, how much pain it'll put me in, and how it will affect the things I have to get done later that day or week. This includes everything from the little things like when I take a shower or if I can load the dishwasher, to bigger things like whether I can meet a friend for lunch, attend a church event, or take on another hour of work. I hate having to say no to things I want to do, especially the things that would make a difference in the world like volunteering my time to help others. However, by learning to pace I've been able to lower my pain and brain fog levels considerably, most days.

(The Spoon Story is an analogy to help us understand what it means to pace yourself all day.)

What are some blessings you've found in the midst of everything? My limitations force me to rely on God's strength for everything I do. All my accomplishments are so clearly things I couldn't have done on my own, so all the glory goes to Him. Also, I find that I'm able to have empathy with others and reach out to help people who wouldn't otherwise have let me if I was a normal healthy person.

Why hasn't God healed you? I believe God can and does perform miraculous healings. However, God has never promised that He will always heal us physically. In fact, just the opposite. The Bible is clear that while we are on this sinful world, we will  have suffering. For now I've heard a clear "no" or at least "not yet" when I've asked for healing. I rejoice in the knowledge that in heaven I will experience a perfect body and in the mean time I know God is using my challenges for His glory.

(My Journey is the answer God gave me to my "Why?")

Have you tried _______ (this special diet, these supplements/vitamins, this exercise program, this treatment, or this medication)? My friend was CURED by doing that! Yes. I've tried pretty much everything. I have to live with this disease every day, so am very invested in keeping up on all the research, theories, and other patients' experiences. Every person's body responds differently, so what may significantly help one person could do nothing or even harm another.

I see you walking around and talking animatedly at church or the writing conference or other gatherings. How do you have so much energy to do those things? I am a bubbly and happy person and my disease does not remove my personality, so I still can seem bubbly and excited even if I'm not feeling well. Also, I'm able to do a lot more for a brief time than I can do for an extended time. Adrenaline and saved-up rest can get me through a few hours or weekend doing pretty well. I then crash at home for anywhere from several hours to several days or weeks. I've also learned little tricks like bringing a little pillow to support my back, parking near the door (handicapped spaces) if I have to carry anything, not carrying a purse, and not standing for too long.

What exactly are your conditions? I've been diagnosed with Fibromyalgia, a heart condition, frequent subluxation (joints partially dislocating), Chronic Fatigue Syndrome, Raynaud's (circulation disorder), IBS, and a vision processing disorder, plus all the things that go with those like insomnia, allergies, digestion problems, muscle weakness, and low blood pressure, etc, etc. That's an awfully long list of things to go randomly wrong and I'm now convinced that I actually have Ehlers-Danlos Syndrome III. It's a genetic connective tissue disorder that can affect your muscles, joints, skin, and organs, and would explain pretty much every single one of my symptoms all from that single disease. I'm working on finding a specialist to confirm the "maybe" diagnoses I've gotten so far.

Sometimes you refer to your limitations as an illness and sometimes as a disability. Why?  What I have is an illness but what I am is disabled. Changing my thought process over to thinking of myself as disabled was a huge step for me in accepting my disease. To me, the word "illness" means something that has an eventual end (either by getting well or by passing away). I found myself putting my life on hold, waiting to do this or that "until I'm all better." When I came to realize that I likely will never be "all better," I grieved for my dreams that were gone, and then eventually I had to get up and go on with the life I have, making new dreams or adjusting old ones. A disability is something that will be there forever, but that can be overcome to some extent. For me, labeling myself as disabled gives me permission to learn to live the life I've been given to the fullest extent possible.

I am so thankful for the internet that allows me to be so much more connected to the world than I can be just physically. Thank you to each of you who support me prayerfully and with encouragement through this journey of life. Please remember as you interact with the rest of the world that some of the reactions or actions you wonder about in others may be because they, too, have an invisible illness causing a problem you can't see. Feel free to ask me questions any time!

Check out the other "Q" posts in the "From A 2 Z 4 U & Me" meme in the link at the bottom of http://www.pattywysong.com/2011/09/cued-for-q.html

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.

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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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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Running on Empty

Hello, blogasphere. I haven’t been around much, but yes, I’m still in existence (note I didn’t say still alive--that’s debatable). I’ve had a few blog posts I was planning to write, but I haven’t had enough energy to get through the day, much less enough left over for writing blogs.

Basically my biggest problem is that I’m not sleeping (no, it’s not stress or worry). I’ve had some sleep trouble for years, but the last couple months it’s getting worse to the point that I’m only getting a few hours of restless and interrupted sleep each night, and natural herbs and supplements don’t help much. I think it may be a low thyroid (I have many other symptoms that match that), and my doctor is doing testing on January 21st.

I called my doctor’s office to make an appointment yesterday. Of course they asked why, and as I was explaining my lack of sleep and other symptoms, I made the mistake of mentioning heart palpitations. The receptionist immediately transferred me to the urgent care advice nurse whereupon I waited on hold for about a half an hour. Finally the nurse answered and asked more questions and then said someone would call me back later.

Hours later another receptionist from the doctor’s office called and said, “I got your message about calling the advice nurse about your heart palpitations, but we’re going to go ahead and just have you make an appointment with the doctor.” Hello people, that’s what I called for in the first place…I could have done that with the first guy and had it all done in five minutes. LOL. Don’t you love doctor offices? I’ve had more than my fair share experience with them, that’s for sure.

I’ve had some health problems since I was born, but they got much worse in 2000. Since then it’s been one thing after another. Many of the issues have been mostly resolved by a naturopath doctor, but a few months later something entirely different will pop up. It seems my body is simply unable to run well. Anyone know of any good body shops? I could use a new one. haha

On a brighter note, I’m excited about my school schedule for this term. As I explained a few blog posts ago, all my classes right now are repeat classes. I signed up for an ASL class and Interpreting Process II. It turned out that the process class is going to be too much of a waste of time repeating reading and bookwork that I did great on the first time around. My teacher suggested that I just practice interpreting on my own, so that’s what I’ll do. She even agreed to meet with me occasionally to give me feedback on interpreting. This will be a much better use of time for me, and will work out well considering my health struggles at the moment (especially since this class required me to get up around 5:00 AM to get there on time--long commute).

I’ve also been doing a lot lately to prepare for next summer’s FaithWriter’s conference. I’ve gotten two agents signed up to come, and have one to three interested in coming next year. This will be a wonderful bonus for our writers, and will likely draw even more attendees. I guess it can be really hard to get agents to come to a small, new conference, so God has really blessed us.

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