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

Moving Mountains

Wow, I didn’t realize it had been quite this long since I’ve written a post. Hope I still have some readers out there! Life is amazing. I graduated from the interpreting program this June, against all odds (only about 15% of students graduate). My friend in the picture, Holly, is one of my Christian classmates and dear friends who has been so supportive. The internship our last term was a great experience and I was blessed with good mentors. I did have some struggles because I ended up with a bit too busy of a schedule (seems pretty much everything is too much for my poor body) but stretched one term of internship hours over two terms and made it through most days. Now I am finishing up a few general education classes for my AAS degree.

Over the summer there isn’t much paid work available, but I’ve been volunteer interpreting regularly at a church. That’s been a blessing for me to be able to minister in that way and to keep getting interpreting practice and experience over the summer. I’m hoping to begin paid interpreting at a community college in a couple of weeks. I really like the supportive atmosphere at that college and I’ll be able to do just a few regular hours of work a week. I’ve also been accepted at a freelance agency and will be able to accept additional work through them during the times I’m feeling better.

My writing career is taking off as well. It can be challenging sometimes because writing takes so much mental creativity and the Fibromyalgia zaps so much of my energy, but as my school schedule is getting quieter I’m able to do a little more writing. My international collaborative fiction group published Delivered the beginning of this year. It’s a beautiful book and well worth getting, if I do say so myself. ;-) It’s available as a paperback or as an eBook on the Peculiar People website, or if you live in my area ask me to buy an autographed copy. PeP is hard at work on the next collaborative book, the Heirloom Chronicles project, and even have an agent who may be interested in seeing the finished manuscript.

I also had the privilege of being asked to speak at the international FaithWriters’ writing conference in Michigan last month. I taught a workshop on self publishing and it was a lot of fun. Despite my fatigue, I was able to speak clearly, and the whole conference had a lot of great info and even better, a lot of wonderful Christian fellowship and support.

My health issues continue to make life a challenge, but God continues to give me the strength to succeed in ways that sometimes seem impossible. One of my friends was just telling me how exciting all the things I’ve accomplished are, and even more exciting because it’s so blatantly clear that it’s not ME who is accomplishing them, but God through me, because there’s no way I could do any of it myself.

Thanks for all the encouragement and support you, my friends and family, have given me. I will do my best to actually keep this blog updated now that I’ve dusted it off again.


Overcome the odds
You don't have a chance
(That’s what faith can do)
When the world says you can’t
It’ll tell you that you can!

I’ve seen dreams that move the mountains,
Hope that doesn’t ever end
Even when the sky is falling.
And I’ve seen miracles just happen,
Silent prayers get answered,
Broken hearts become brand new.
That’s what faith can do!
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise.

Kutless—“What Faith Can Do”

Finding the Pace of Life

Last week I was chatting with my young nieces about writing and drawing, when one of them commented, “Maybe when you grow up you’ll be a writer.” I had to laugh, but I also still get a little thrill sometimes when I realize, I am all grown up and I am a writer. Last month I got published for something like the fifty-fifth time, and last month I also started working professionally as a freelance editor. Of course, I’ve been doing small editing projects for friends and for PeP for years, but not full-sized manuscripts for strangers for pay!

This term I’m not taking any regular classes—just mock interpreting in one class and doing a Human Development correspondence course, as well as continuing with a little interpreting training with tutors. It’s a quiet schedule that seems just about right for my body, and lets me do occasional writing or editing in the evening.

I feel like my Fibromyalgia is finally as under control as it’s gonna get. My overall fatigue and especially pain levels are a little lower, and the cognitive problems aren’t as severe or as frequent. The only problem is that I’ve discovered in order to keep things that way, I have to limit my active activity time to about three hours a day, most days, with some rest days and lots of naps. So it limits things a lot, but I’d rather have a few hours I can do things well than have almost no good hours like happens when I push myself too hard.

On November 16th I have the next attempt at the Qualifying Exam for my interpreting program. I have to pass it in order to get an internship next term, graduate in the spring, and begin working part time as an interpreter. I feel fairly confident that I have the skills, I just have to pray my body will let me access them. It’s a performance exam, so not really something I can study for—just need to keep practicing.

Today I went to the DeafNation Expo. I took a couple of friends with me, one of whom doesn’t know much sign, so I got to do a bit of interpreting for him. Real life practice is always the best. We saw tons of people we knew at the Expo, so it was a lot of fun.
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When I grow up, I want to be...

This year God has been teaching me two things: complete dependence on Him, and, in that dependence, how to find true joy. He’s been showing me that we were created to be happy, because in Him is fullness of joy. Here on this earth that joy will never be pure and complete, and we will face many trials and times of suffering, but even in the midst of those times, He will provide joy, if we wait on Him.

This is a bit of the story of my journey. I know it’s long, so if you don’t have time to read it all, please at least read the last part.

I started grieving in the summer of 2007. The loss had come a long time before that, but I’d never fully accepted it.

The life I was grieving was my own.

Each time I waited for test results, waited for a doctor appointment… each time I writhed in pain or was too tired to hardly hold up my own head, I wondered what it would be like to get the news that I was dying. I thought about what it would be like to know I had only a few months to live, or a few years. I hoped it would be long enough to finish a few books, to leave a legacy behind. I planned what I would say to my friends, how I would tell them. I even planned what to write on my blog.

Even more, I thought about how it would be to get the other answer--the one that told me what was wrong and how it would be fixed. I didn’t have to think much about what I would do when I got that answer, because I knew. I’d been planning my life since I was little, dreaming about what I would be when I grew up, just like all kids.

But the thing I didn’t think about was what I would do if neither of those happened. I didn’t think about what would happen if the answer wasn’t death, or really even life, but something in between. How do you plan for something that isn’t a “yes” or a “no”…something that’s not even really a “wait,” but is just, well… an “is.”

And yet, it’s something we should all be planning for, something we all should know will happen. Because the day will come for all of us when God says, “You don’t get to live according to your plans. You get to live My plans.”

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Once I grew past the stage of wanting to be a pink and purple kitty cat, my childhood dreams for my future never changed a lot. All through my school years I had the same answer to that perpetual question of what I wanted to be when I grew up: A stay-at-home homeschool mom and a missionary, preferably to Mexico. The number of kids I wanted did change, rather drastically. As I matured, I realized my childhood visions of a dozen kids might be just a tad lofty. I adjusted it to the more reasonable number of six, and later even less, saying, “I’d be happy with at least four.”

I’ve always loved kids, and kids have always loved me. My mom calls me “the kid magnet.” Seriously, I can spend a total of 60 seconds with a youngster and the next time he spots me he’ll start screaming, “Amy!!” and jumping up and down excitedly. I pictured myself as the ultimate involved, imaginative Mom, with enough discipline to keep everyone happy, but with lots of adventures and fun. I figured I’d be married in my early twenties, start our family a year or two later, and after everything was settled down several years after that, perhaps be called to the foreign mission field.

You may wonder why writing didn’t play a role in what I wanted to be, and that’s because being a writer has never been something I want to attain someday. It something I am. I’ve always been a writer and I always will be one. A novelist, however, now that’s something I attain to be!

So I went happily through my young life, picturing my adult self as a wife, mom, writer, and missionary. In my senior year of high school, my hopes shifted slightly to accommodate a new love of figure skating, and a growing love of American Sign Language. My next-oldest sister and I began taking ice skating lessons. Though we were comparatively old to be learning that skill, and we both were beginning to struggle with our health, we threw ourselves completely into it and joined the group of “rink rats.” We were on the ice at least four days a week, practicing and soon entering competitions and working as assistant skating teachers. We even got to do some informal mentoring of the younger skaters in our social group.

Now my goals included becoming a figure skating coach, preferably with a lot of Deaf clients. Despite growing pain and fatigue levels, I made it farther than any of the coaches and parents expected. After four years of skating, I was able to do one of the lowest sit spins at the rink (though my camel spin, on the other hand, looked horrid! lol), could land all my single jumps, and was working on my axel and double sal cow jumps. Then, slowly, skating got too expensive and time consuming, and too painful.

Besides, God was drawing me toward another focus. Two summers in a row I attended ASL camp in Tennessee at the Bill Rice Ranch, a Christian Deaf ministry. It was there God began letting me know He had plans for me as a sign language interpreter.

Though I’d been playing around with sign language since elementary school, and more recently pursuing it more strongly, the thought of being an interpreter when I grew up had never crossed my mind. And yet, it fit so perfectly. I love languages, cultures, and people. I have a deep empathy with others, am not shy, and experience little to no stage fright. Perhaps the Deaf and interpreting community was to be my mission field. And though no husband was in sight yet, interpreting was something that could easily be adapted to being a stay at home mom. I could work one or two nights a week while my husband was home with the kids, or I could just accept special assignments like weekend Homeschooling workshops.

Still, if I had not known so clearly that this was the path God wanted for me, I would have given up so many times. The two year interpreter training program is stretching into four years, as I’ve been faced with learning disabilities and visual struggles, and one health problem after another. But there was always the bright future ahead. A future after the training program, when I would finally have a basic set of skills to build on, and I could go conquer the world. Perhaps I would meet the right guy shortly after I was done with school, and I could work as an interpreter for a bit before turning my focus to a family. I would be happy and healthy and my own energetic, happy-go-lucky self as an interpreter, wife, and mom. I could be a missionary here at home, or go work with foreign Deaf missions. And in between all that, I could write all those novels building up in my head.

And then…

Then came that answer, the diagnoses after all the tests and all the doctors. Fibromyalgia. It was a long word, and one I understood too well, since my oldest sister lived it every day. It was the answer that wasn’t a yes and wasn’t a no. It wasn’t death and heaven, and it wasn’t health. Instead, it meant a life of constant pain and fatigue, a life of sudden boughts of cognitive dysfunction, IBS, and innumerable other symptoms. A life with an illness that doesn’t kill you, but yet doesn’t get better or go away.

It meant a life that didn’t match my life. Suddenly my brain doesn’t always work well enough to understand English clearly, much less translate it into a whole second language system. Suddenly I’m so fatigued I can hardly think of any words, much less write amazing fiction stories. My pain levels teeter so high I can hardly load the dishwasher, sign for more than a few minutes, or hold a pen long enough to write a thank you note.

The thought of working full time and then returning home to an evening of housework and socializing suddenly is impossible. Thinking of caring full time for children is overwhelming. Life becomes defined by four letters: PACE. Pacing is the single most important thing to managing my symptoms enough that I can live…at least a little. I must work a little, and rest a lot. Before I do anything, I must think how it will affect me, and if it’s worth it…which is certainly challenged by the fact that how it affects me changes daily or even hourly.

“Why?” I cry out to God. “Why do you give me all these talents, skills, and dreams in one hand, and then fill the other hand with…this? How can I grow up to be the successful person You want me to be, if I’m to be sick, forever?”

Slowly, as I learn to accept my disability and learn how to live life as fully as I can with my limitations, I begin to see. Still, only as in a mirror dimly, but I see in my reflection how God uses my life--not the one I dreamed of, but the one I have--to bring Him glory, to reach people that other life would never have touched, and to trust Him and depend on Him completely.

As I do that, I see bits of those talents He’s given me can still be accessed. I grasp a little energy to write with, and times of less pain to interpret a while. As I learn to pace, those times grow. Perhaps someday I’ll even gain the strength to care for a family. I don’t know what the future holds. But I do know one thing.

God is enough. In Him is fulfillment, and in Him is fullness of joy. Despite this earth, with its emotional and physical pain, we were created to have joy. Though it won’t come completely until we reach heaven, for now it is enough.

Today, on my twenty-seventh birthday, when my life is so different from how I dreamed it, I know what I’m going to be.

When I grow up, I’m going to be happy.

Hold on Tight--life's a wild ride!

Life is certainly never boring around here. Let’s see, last blog post I was waiting to hear back from my echo on my heart, right? Thankfully it turned out normal. Most all my symptoms can be explained by Postural Tachycardia, which is annoying but not serious, and more related to the circulatory system then the heart itself.

As I’d hoped, my health started getting a little better this term, now that my school schedule is more sane. I finally got a sleep aid that helped, also (before that, if I was sleeping at all, I was waking up as often as every fifteen minutes). I finished up the study I was doing on the new Fibro med. I’m hoping to be able to stay off a pain med and just have the sleep med. I really don’t like to be on prescription meds at all if I can help it. So, I had about two weeks of things going pretty well.

Then the next thing hit.

I started having a lot of nausea and abdominal pain, different and longer-lasting than what I normally have with IBS (Irritable Bowel Syndrome--goes along with my Fibro). It didn’t feel like a virus or bug to me, so after several days I saw a doctor who decided it seemed to be a bad flare of IBS and gave me a med, with warnings to watch for appendicitis symptoms.

On Wednesday I was feeling sick and out of it with Fibro Fog, but went to school anyway. At least the cognitive problems provide good humor relief, if you let them! To give the rest of us practice interpreting in K-12 classrooms, a classmate was pretending to teach a 1st grade class, teaching shapes. Those who weren’t interpreting were pretending to be the 1st grade students. Some students pretended to answer questions wrong. As for me, haha, I didn’t have to pretend at all! The “teacher” passed out cardboard shapes and asked a question about road sign shapes. I held up a triangle and announced that yield signs were that shape--rectangles! Then when asked to find two squares, the “teacher” looked at what I was holding up and said, “Um, good try, Amy. You’re almost right!” LOL

I was finally feeling better last Thursday morning. I was excited because my Deaf interpreting tutor, James, had time free during my Mock Interpreting class for the first time all school year. (Mock is where a partner and I go to a real college class and interpret, but with only an imaginary Deaf client). I’m loving the class we’re interpreting in, though it’s a challenge, and I like having a real person to interpret for, so I was looking forward to having James be there. My Mock partner is a classmate, sister in Christ, and dear friend, Holly.

Thankfully I got through the class just fine and was headed to lunch with Holly before we met the tutor again to get feedback. We were almost to the cafeteria when pain hit. Bad. Like a knife ripping straight down from my belly button to my groin. For the next hour it hit me every few minutes. Sitting and laying down just made it worse.

I decided I better call my doctor. I knew they’d want to know if I had a fever, so I asked the college librarian if there was a nurse on campus. By that time I was shaking violently and pale and sweating from the pain. She quickly called security (1st aid response). He was cute. I told him I had Fibromyalgia and he looked blank for a minute and then brightened. “Oh, that’s a liver disease, right?” Um, yeah, not so much. I would have giggled if I hadn’t been so sick.

By then it was time to meet James. The stabs were coming a little less frequently, so stubborn me decided I would try to just push through the hour tutoring time so we could get feedback from James while it was still fresh in his mind. James watched me for a minute and then just got up and left. He’s like, “I’m leaving. Holly is driving you to the doctor.”

It’s so cool how I can see God’s hand in even things like this. Besides the timing of being able to finish the Mock class, it “just happened” that Holly was driving to a place a few blocks from my doctor’s office. She lives 45 minutes away in the opposite direction. That doctor looked at me and sent me straight to the ER (Mom came and picked me up).

I wish I could have the ER doctor for my primary care doctor. He actually talked to both mom and I (instead of ignoring one of us like many do) and explained the options and his opinion but let us have the final say without being pushy. They did blood and urine work and then did an ultrasound of my lower abdomen. Thankfully by then I wasn’t in too much pain. I can’t imagine having to go through an ultrasound if pressure caused pain. As it was, it was a little uncomfortable but mostly just interesting. I could see the pictures on a monitor over the gurney. Much of it wasn’t recognizable, but I was able to pick out my appendix and ovaries. The pictures are so curious…it isn’t a clear picture, but looks more like looking at something that has a thin piece of rubber stretched over it. The harder they push on the ultrasound wand, the tighter the rubber is pressed, making the outline of the organ a little more distinct. The pictures suddenly struck me funny and I got the giggles right in the middle of the ultrasound. Twice! I felt so bad because the poor tech lady couldn’t exactly do her job when the abdomen in question was shaking violently from giggles. Certainly that’s one of the few times in my life when I was saying to myself, “Think sad thoughts. Think sad thoughts.” LOL!

The ultrasounds looked normal. Five hours after arriving at the ER and eight hours after the bad pain first hit, I was sent home with only answers of what it wasn’t… The ER doctor said about 50% of the time they never do figure out what causes that kind of pain.

I’m still feeling a bit odd and achy in my lower right abdomen, but thankfully haven’t had any more severe pain. I have a follow up appointment next week. Unfortunately, I picked up a bad cold, probably compliments of the ER, and now have a bad cough. Just in time for mid-terms.
Ah well, such is life. I’m staying in pretty good spirits despite everything. School itself is going okay, other than the health stuff getting in the way. We have three extra interpreting tutors this term, two Deaf and two hearing interpreters, so we’re getting a variety of perspectives. It’s awesome and they are all so helpful and encouraging.

Last week Debbie Roome of Take Root and Write published an interview of me talking about life with an invisible disability. She writes the column “Daring to Love the Disabled.” The interview is here. I’m thankful for the opportunity to help spread awareness. I also have an article coming out soon in HopeNotes, a Christian magazine for people with chronic illnesses, and an interview being published in a book for teens who have Fibro. I’m thankful that God uses my trials to be able to reach out and help others.
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In the land of Uz

I’ve been waiting for this week for a while, but it didn’t bring the answers I’d hoped for. I had my cardiology appointment on Wednesday and got the results back from my second Qualifying Exam yesterday. I was really hoping to pass the QE, and I feel I have the skills to do so, but because of the cognitive problems caused by my Fibro, I often can’t access those skills. It didn't help that I'd just come down with the flu the night before the test. Well, I improved on the sign to voice section of my QE, and passed it, however I actually got a worse score than before on the voice to sign part. Since we have to pass on both parts to get an official Pass, I won’t be able to get an internship or graduate this year. The next opportunity to take the QE is in nine months (we get four total chances to take it).

I have to admit I’m frustrated and discouraged, but I know God has plans. I can see that it was a very good thing I didn’t pass the first QE (no possible chance I could have made it through this term with the addition of an internship--almost didn’t make it as it is), so I know I may look back on this one and see the reasons I didn’t pass. As it is, I’m hoping that I’ll actually be able to take care of myself sufficiently enough to be higher functioning a greater part of the time. This weekend I realized that for the past two terms I’ve been having to spend nine to twelve hours at school (including driving time) everyday. That’s a crazy schedule even for a healthy person. (Because of the specialized program I’m in, I’ve had no control over my schedule.)

Next term will be a little easier since I won’t have the internship. I have my schedule for that term planned out, hopefully with a good balance of rest and continued practice, but I’m not sure what my plan of action will be for over the summer and next year. I need a few more general ed classes for my AA degree, and I need to continue to focus on my interpreting skills, but I think the main key to my success will be to get healthier, and about the only way I can do that is to rest more so my Fibromyalgia symptoms are lessened. I’m praying for guidance as I figure out where God’s leading me for the next year.

Speaking of health, my cardiologist appointment was…interesting. The guy had a rather condescending attitude and I’m quite sure he thought I was 18 and didn’t bother looking at my chart to see that I’m much older than I look. My impression of him didn’t improve when his response to my sign language interpretation studies was, “Oh, then you must work at the blind school.” (believe it or not, that type of comment actually isn’t unusual… but hello, this was a doctor with how many years of schooling??)

Anyway, the cardiologist declared that all my symptoms were simply because I don’t get enough exercise. However, according to my research, it seems that lack of exercise can’t cause heart irregularities. Exercise might help some heart conditions, but lack of it doesn’t cause them. I will be getting a second opinion, but now that my schedule will be getting a little closer to sane, I’ll go ahead and try to add in swimming a few times a week. I’ve heard it often helps Fibro as well as some heart issues.

I suspect my heart issues are actually caused by Postural Orthostatic Tachycardia Syndrome (POTS), which actually isn’t a heart problem, but more of problem with the way the brain communicates with the circulation system. Basically the body has trouble regulating blood circulation, especially when standing, and therefore the brain doesn’t have enough blood. Apparently it’s fairly common for people with Fibro to also have POTS, and unfortunately some of the symptoms are the same. That means if I have it, I’m getting a double dose of debilitating fatigue, cognitive problems, and sleep disorders. Next week I go to my doctor for a prescription sleep med, so I’m hopeful that will help things a little.


*Title from Job 1:1

With Wings

The time has come. I’ve had four years of hard work, challenging work. There were many times I wondered if I would ever make it this far. Yet, by God’s strength, here I am, facing the Qualifying Exam for my interpreting program. All of the work, sweat, tears, and yes, joy, comes down to twenty minutes. Two ten minute texts for which I must absorb every word, figure out the meaning, translate into another language and culture, and produce smoothly--all while still understanding the next sentence, and the next, never loosing a concept.

If I pass the QE on Monday the 23rd, I’ll be assigned an internship with a few skilled interpreters, and will began working under them as a classroom interpreter. Then I can graduate this spring (though I’ll have to take a few summer general ed. classes to complete my AA degree) and begin working in low-risk settings as an interpreter.

We have four chances to pass the QE. My class took the first one a few months ago. Only one student passed. I almost passed that one and was feeling confident about passing this next one. But God has a way of making sure that every time I start trusting in myself, a reminder comes along that HE is the one my strength comes from--I can’t do it myself. And so it was that I had a bad flare during much of this school term, primarily debilitating fatigue and cognitive problems. I went almost a month with only a few hours of interrupted sleep most nights. I failed a test because my short term memory couldn’t grasp what I was seeing quite long enough to write it down. I was having language production problems, meaning I was walking around saying things like, “Dad, it’s your turn to heat your food up in the dishwasher.” or, “Wheryugn?” And that was just the English chat, my ASL was worse and my interpreting… well, mostly wasn’t.

I’m doing mostly better now, but besides the tests I messed up, I feel like I lost about three weeks of practice time, and maybe even went backwards in skills. So here I am, facing the QE feeling totally unready, but trusting God because He’s already proved that He can do the impossible in my life.


This term hasn’t been all bad, though. In school we are focusing on K-12 classroom interpreting and our last topic in ASL class was interpreting children’s books. We each got to pick a book and then performed the story for our test. I wish all tests could be like that! I love it and had so much fun. I posted a video of it here.

I continue to be encouraged by how God uses my struggles to reach out to others. I was recently interviewed by a researcher from OHSU for a book she’s writing for teens who have Fibromyalgia. Then just last night I was invited to sit on a workshop panel of interpreters with disabilities. The workshop will be this spring and the panel will have a mix of hearing and Deaf interpreters with visible and invisible disabilities. Also this spring, HopeKeeper’s magazine is going to publish an article I wrote shortly after being diagnosed with Fibro.

Oh, I guess I should give an update on my heart, too. I now have a heart monitor, which has proved to be rather noisy and sort of amusing. When I start feeling heart palpitations (which is generally constantly from evening through to the morning, and occasionally all day) I’m supposed to push the button to record my heartbeat. Then the little machine gives off a loud tone with an even louder beep for each beat. Thankfully I can mute it a little by putting a finger over the speaker, but it still distracts my classmates. Then it rings every half an hour until I can get to a phone (can’t use a cell) to transmit the recording. I just lay the receiver of the phone over the monitor and it screams its beep into the phone at four times a faster speed. It often sounds rather like a beeping tea kettle. Somehow I don’t think that’s quite what a heart is supposed to sound like… I see the cardiologist next month. If something is wrong with my heart, I’m sure that’s contributing to my fatigue and sleep problems.

But those who wait on the LORD Shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint. (Is. 40:31)

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.

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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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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