Plain. Very Plain. Very plain with nothing on it.

I have food allergies. A lot of them. My sisters do as well and when my family gets invited to a friend’s house for dinner, our typical response is, “Are you sure? You might want to just invite us over for games or something.” As for eating out, we’ve learned which restaurants are allergy friendly, and which aren’t. Some places are great and will go out of their way to make sure there is tasty food we can eat. Some try to be helpful, but don’t realize to be careful about cross contamination and such (i.e. using utensils that have touched the allergen foods). Then there are the people who are just clueless.

“No, this gravy can’t have milk in it. Duh. It’s brown, not white.”

“You’re allergic to wheat? No problem, this isn’t wheat bread, it’s a white bread.”

These are the places that promise their meat is plain with no spices. Then they bring it out covered with marinade and spices. Turns out, they, themselves, personally didn’t add any spices. The manufacturer may have, but the cook himself didn’t. My sister and I have a rap: “Plain. Very plain. Very plain with nothing on it.” But you have to know what questions to ask to insure that it really, honestly is plain.

Right now my diet is even more restricted than normal because I am in a research study to see the effects on Fibromyalgia of avoiding excitotoxins (additives like MSG, which is often called natural flavors, or artificial flavors and artificial sugars), so I can’t have any processed foods.

Today I went to the doctor’s office to pick up barium packets for the CAT scan I’m having on my abdomen next week. They had told me there would be an ingredient list on the packets, but it only said, “Barium sulfate 2%.” The X-ray front desk lady told me that meant that was all that was in it.

Uh huh. Right. What’s the other 98%? So she agreed to call the electro imaging department. They, too, promised that there was only barium and water in the packets.

“So, there’s no flavorings?”

“Oh, it has a flavor.”

Yeah, last I checked, flavorings had to be made from something. Usually, from nasty stuff like excitotoxins. I finally gave up trying to get info from the doctor’s office (“It’s just barium, really. This is medical stuff. Of course it would never have MSG in it! Definitely not!”). I found a phone number of the manufacturer on the packets of barium. I left a message and they called me back promptly with a list of ingredients. A long list. A list full of natural flavors and artificial flavors and fake sugars. In other words, MSG.

The company worker said they do actually make a barium that is, honestly, just barium, but it has to be special ordered by the doctor’s office. I think I’m gonna go ahead and just drink the poison. By the time I get the CAT scan next week I will have had this weird abdominal pain for eight weeks. We need to find out what’s wrong. So next Wednesday I get to drink three glasses full. Yum!

Voice Acting--the stuff of life!

Today is the stuff life is made of. I volunteer weekly (when health permits, anyway) at the local state school for Deaf kids, helping out during after school electives. This term I was thrilled to get to work with the elementary drama group. I love acting, I love that age of kids, and I love signing…how much better does it get? (one more better, but I’ll get to that!)

Sometimes it was a little challenging because most of the kids only had a line or two in the skit, meaning at any given time during rehearsal there were about 12 bored little kids waiting for their turn, LOL. But that gave us volunteers something to do (help keep them out of trouble).

Young kids can be a challenge to understand in any language, and many deaf kids get no access to language until they arrive at school--putting them behind. Of course, it’s my second language, so that adds to the challenge. I started volunteering there (off and on) three years ago. It’s exciting to see my progress in receptive skills since then. Now I can understand pretty much everything going on, even overheard conversations (oh my, the little six-year-olds’ are sooo adorable, even when they are mad, haha. ASL is such an expressive language and they take full advantage of it! “If you do that, I’ll cry and cry! I’ll cry a roomfull of tears and drown in them!”).

The grand performance was tonight. On Tuesday near the end of practice we suddenly discovered that, contrary to what we assumed, there would be no voice interpreter for the play. Some of the audience doesn’t know sign, and the students really wanted their hearing guests to be able to understand the play they’d worked so hard on. Guess who got called on? You guessed it--me! Of course, I can’t technically interpret yet, but because we’re working with a script and get to practice with the actors it’s considered “voice acting” instead of interpreting.

I’ve loved reading out loud or doing dramatic readings with all the voices for as long as I can remember, and voice acting for real live people instead of fictional written characters is even better! I’ve had the opportunity to voice act for plays at the school before, and loved it. Though that time I actually got to prep and practice a bunch ahead of time, ha. This time we had a total of one afternoon of rehearsal. I asked a classmate to help me, so we could do the back-and-forth dialog. Of course, I’d seen the play (in bit and pieces) as they’d been learning it, but my classmate hadn’t seen any of it and wasn’t familiar with the kids.

The afternoon rehearsal today was pretty important. Yeah. Well. Both of us ended up stuck in freeway traffic. For almost an hour and a half. Meaning: we completely missed the rehearsal. Boo for forgetting it was Memorial weekend and realizing that meant everyone and their fifteenth cousin would be on the freeway.

Allrighty then. Thank God for a laidback group of people. We were able to at least talk over the script with the assistant director and introduce my classmate to the students and their roles. Then, right before the performance started, the kids went through the play one last time out on the back patio. Phew. We voiced it and worked out a few kinks and were ready to go!

It went marvelously. Of course there were mistakes, mostly things like voicing a line for the king with a high-pitched voice and the queen with a low voice--oops--but overall it went quite well. There’s nothing quite as satisfying as being rewarded with a ripple of laughter from the audience for a line well-acted and well-voiced. The kids did a great job of ad libbing and knowing that "the show must go on" when prop problems showed up, even when the princess (from Princess and the Pea) tumbled right off the tall bed with the air mattresses and covers crashing down on top of her! It rather added to the comic effect of the play.

After our elementary kids’ skit, the high school students did a play (without a voice interpreter). Wow. They did an incredible job with acting and props. It was beautiful.


[OK, survey--and I honestly want to know. I sat down to write a brief post about my day, and it turned into a page-long novel. Do you guys like reading my accounts with lots of details like this, or would you rather have a brief account with just the main info and a few funny anecdotes?]

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.
.

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!
.