Saturday, February 28, 2009

Change Your Mind - Sister Hazel

Fever, 100.7

Gotta rest. Will write tomorrow.

Seriously, though. The microwave is bigger than our oven.

Friday, February 27, 2009

One Week - BNL

Spoke with the rheumatologist today. She supports another week of Prednisone (15mg/day), but did not seem particularly encouraged by my recent, small improvements of mental clarity. She wants me to pay closer attention to my musculo-skeletal symptoms. I think I need to start keeping an hourly journal. My symptoms have been so up-and-down lately.

Only slept about 8 hours last night. Had lots of trouble falling asleep. So bored. I mean, seriously. For the past 18 years, I have been the definition of the over-scheduled child. Not that that's a bad thing! I like being involved, exploring my interests, utilizing my time and my gifts, being an advocate. Not being a couch potato. For so long, my plan was to impact people, perceptions, whatever. Now I feel like I impact two things: my sofa, and my doctors' bank accounts.

Surely this will change. But for now I am trying to keep myself busy. Boredom doesn't suit me. Nor do heart palpitations, headaches, extreme drowsiness, joint pain in wrists, hands, shoulders, elbows, hips, backache, neckache, stomachache, chest pain, earache, and continued difficulty reading.

Bah. Maybe the Prednisone is just wishful thinking.

In other news, our microwave went on strike, and the new one is humongous. Julia fits in the box.

how many bags of popcorn can you pop at once?

Thursday, February 26, 2009

Freda (with the Naturally Curly Hair) - Vince Guaraldi Trio

Hola! Today it is raining! Most sane people don't like rain, but right now I LOVE it! It washes away the bright white snow...the sun is not out...the clouds are pretty dark. Yes! I can go near windows without wearing sunglasses. Still really sensitive to light and sound. Bring on the rain :)

Feeling physically very fatigued, but my mind has significantly fewer, significantly shorter periods of fogginess. Yay for small improvements! Not sure how we'll present it to the doc tomorrow...whether to try to stay on the Prednisone for a few more days or not. Pain: left ear, right shoulder, both hands/wrists/elbows, chest pain, less severe headaches, palpitations, and my low back and hips feel like they're being held together with barbed wire.

But I'm feeling for some reason a lot more upbeat, which seems like a big deal.

Took the Prednisone with pudding this morning--seemed to help stomachaches temporarily.

watching the National Geographic Channel,
I had no idea there was such a thing!

Wednesday, February 25, 2009

Perdido - Ella Fitzgerald

Overall, I think today has been a smidge better than yesterday. =)

Yesterday my nose went numb for about a half-hour. Freakish. Lots of pain in general. Difficulty sleeping.

Today I look really pale, and I probably have a small fever. I know there's a thermometer around here somewhere. Tired.

Still having joint pain, chest pain, but fewer headaches! Granted, I upped my ibuprofen a little, but hey. Still having stomachaches, eyes and ears hurting, but I went to the chiropractor and the last few hours have been significantly better. (I just hope I still have relief tomorrow!)

Watching a lot of inspirational movies, esp. set in Depression-era America. Rough, rough times. Big, big victories. Good stuff.

Biggest change is a lot more mental clarity in the past few hours. Much appreciated.

time for my 7th meal of the day,

Tuesday, February 24, 2009

We're in the Money - 42nd Street

It's quite convenient that I have so many socks. Christmas socks, Halloween socks, striped toe socks that I've never worn in public. (My family loves clearance-priced anything. "Class of '05" socks for 45 cents. Can't beat that.) Anyway, I wear 3 pairs of socks a day, plus slippers. I've known for a few years that I have poor circulation, but last night I found out it has a name! "Raynaud's Phenomenon" ...ooooh! Basically my fingers and toes get really red sometimes, and my extremities have a hard time keeping warm. says it's "more a nuisance than a disability." I don't think there's any test to diagnose it.

Here, here! One of my symptoms has a name! Fantastic!

Anyway, last night: had trouble sleeping, staying asleep. Lots of back and neck pain, stomachaches, ear-ringing. It also probably didn't help that I'd watched 11 episodes of Seinfeld during the day. Kramer is just as eccentric in your dreams. Freaks me out a little.

Today: lots of headaches, joint pain--fingers, hands, shoulders and hips are killing me, still thirsty, earaches, heart palpitations, dizziness, etc etc, same as before.

Happy Mardi Gras!


Monday, February 23, 2009

With a Little Help From My Friends - Jim Sturgess & Joe Anderson (Across the Universe)

Little change of plans. To really give the Prednisone a "fair trial" we're continuing the 15 mgs through Friday, then see what Dr. Bodkin says. My tummy's not too happy about it, but whatever. Maybe it just takes longer for some people. Pain, pain, go away...

today: headaches, dizziness, hurts to move my eyes quickly, ear aches, joint pain esp. wrists and elbows, excessively thirsty, difficulty sleeping last night, etc.

We're still waiting for a more detailed report, but it sounds like KF's surgery is "so far, so good" :)

This is really rough, but I know I have a lot of terrific people in my corner. Thanks for everything; even if I haven't had the energy to reply, know that I appreciate you. =]

I emptied the dishwasher today! And folded socks! chyea. big deal.

smelling like fabric softener,

Sunday, February 22, 2009

Cold Shoulder - Adele

Two posts today. Today's been bad.

Around 1, I started having a really bad stomachache, so I went to lie down. It got worse. Headache, low grade fever, really hard to breathe, lots of pain in my upper chest, like when you've been running outside in cold, dry air. Pain in my side, spreading through my entire right rib cage like a net of nerves getting zapped by electricity.

I don't know if this is making sense. Thinking is delayed and foggy. Having short-term memory loss. So frustrating.

Anyway, it hurt, so I called to my parents, but they couldn't hear me. I always keep some kind of phone on my bedside table in case of emergency, but my cell had died. So that was scary. But we called the rheumatologist's pager or whatever, and she said that the prednisone was probably causing my upset stomach. Planning to wean off-- 10 mgs tomorrow and 5 on Tuesday. Happy to get off the drugs, although they say depression is the biggest side-effect. ugghhh.

As for the spasms in my chest and side, she said it was probably just a pinched nerve (just? just a pinched nerve?! it hurt a lot!) and that when I go in next week she'll prescribe a muscle relaxer. In the meantime, just took some ibuprofen and tums and rested.

We thought we might have to go to the hospital today. Dr. Bodkin at first thought that my stomachaches might be a sign of appendicitis or whatever that's called. My dad had it. I guess it's good we didn't have to go to the ER or anything, but I'm still in a lot of pain.

I don't get it. I don't understand any of this. How does a perfectly healthy teenager suddenly get into this mess? I started watching the Oscars, but I don't know, I guess I'm just insanely bitter. The world spins on! Everyone's lives go on! Every so often I'm just shocked, like, whoa! It's 2009? Really? did that happen? (Slept through New Year's.) Wait, and it's February?

...and i'm. still. HERE.

...and i'm. not. BETTER?!

I don't get it.

patience patience patience patience,

O Magnum Mysterium - Frances Poulenc

For a while we've been aware that "false negatives" in blood tests are somewhat common. Friends whose blood samples showed Normal ended up being diagnosed with Mono, Epstein-Barr, etc, later on in their illness.

Last night my mom read that it can take up to 10 years for Lupus to register in blood work and spinal taps.

...trying not to freak out...

We're getting lots of mixed signals about so many important things -- whether to exercise, whether to take sleep aids, whether to check out Mayo Clinic. Aggh. Not fun.

It took me 2 hours to fall asleep last night, with 3 Advil PM. Woke up every couple hours with back pain. My joints are just crazy. Elbows, wrists, hands, fingers, ankles,
hips, neck, back, jaw. Heart palpitations up the wazoo, headaches, still lots of eye problems.

Gotta get through this.

There are 120 boxes of Girl Scout cookies in my living room,
emma :)

Saturday, February 21, 2009

Wake Me Up - Norah Jones

Slept 11.5 hrs last night. How is it possible to still be sooooooooo tired?!

I feel like a zombie. I have no energy. My brain is all foggy and...yeah. mmrf-wwlllaaahh.

Last night, ear aches and back spasms were my biggest concerns. Right now my arms feel like they are going to fall out of my shoulders. ouch.

It's snowing a lot. Sad that family in from out of town won't be able to come visit, but VERY excited to hear rumors of a lil tyke to be born!! :)

I'm lucky to have such supportive friends and family, and family friends, and friends of friends who are keeping us in their thoughts and prayers, and giving all sorts of advice of what to do.

I hope we can figure this out and pick the right path.

drive safe out there!

Friday, February 20, 2009

Send Me On My Way - Rusted Root

Happy Friday! Free bagel day at Einstein's :)

The rheumatologist wants me on the prednisone for another week, then we'll be able to fully evaluate its effectiveness. She's thinking of putting me on a muscle relaxer in a couple weeks too, to relieve pain and help me sleep.

The biggest problem I have with the prednisone is that it makes me so hungry! All the time! I'm eating a full meal literally every 3 hours. I feel like a hobbit. Breakfast, second breakfast, mid-morning snack, brunch, lunch, afternoon snack, tea, supper, dinner, dessert... :P haha.

Didn't sleep well last night. Kept waking up thinking I had one day to plan an entire Snowball weekend...which I did successfully by the end of the dream! :) Anyway, today doubly fatigued, especially my eyes, heart, and arms.

Praying for a friend KF in the hospital this weekend, having surgery Monday.

nap time,

Thursday, February 19, 2009

A New Day Has Come - Celine Dion

When I was seven, Titanic came out. Got the cassette tape. I wanted to grow up to be Celine Dion.

I'm trying really hard to keep a positive outlook. Seeing the rheumatologist tomorrow to see what our options are. Today's day 5 on the prednisone, and there appears to be no noticeable improvement. Bummer.

WALL-E is a terrific movie. Reminds me that my limited condition reduces my carbon footprint!

Super, super tired.

Yesterday my dad talked to a co-worker of his who has Chronic Fatigue. Dad said that it took over a year and 16 doctors to diagnose and treat his condition. Leads a normal life, but still has a few days a month where he just has to clear his work and family schedule because he's just so fatigued. Like me.

I know my dad means for that to be comforting--that people with CFS are still able to work and have relationships and families. But it's just scary. I don't want to wait another 6+ months for a diagnosis. And, let's be honest, I'd rather not be a Narcoleptic Nelly for the rest of my life.

...oh man. New superhero name.
haaaaa hahaha

"where there was weakness, I found my strength"


Wednesday, February 18, 2009

Soul - Matchbox Twenty

I forgot to mention what went down last Friday with regard to CLC (College of Lake County). It's not happening this semester. :-(

I know the prednisone is affecting me emotionally as well as physically, so I should be careful what I write. Just feeling down in the dumps. Coming to grips with the idea that this really could be a life-long condition. Will fight hard to get this figured out. I really miss living life. I was healthy! What happened?!

I'm still taking ibuprofen (albeit a little less) on top of the prednisone. Fatigued, palpitations, maybe a little less chest pain, joint pain, earaches, cramps, etc.

I have this thought, usually about every hour, that goes, "What the heck am I doing here! I'm 18 years old, for pete's sake! I don't belong here!" I should be thankful for all that I have, and I am. But it's tough.

We'll figure this out.


Tuesday, February 17, 2009

Washed by the Water - Needtobreathe

I am just plain vain and want my hair to stop falling out!

Slept better last night, weird dreams though. Right now, shoulders, fingers, neck, back all hurt. Haven't been to the chiropractor in about 10-12 days. I don't particularly want to go back because traveling there, sitting in the waiting room, getting adjusted, and coming home is so exhausting that the 12-24 hours of relief I get doesn't seem worth it.

Very tired.

Thanks for all your prayers, emails, etc.

even when the storm comes,

Monday, February 16, 2009

Hide and Seek - Imogen Heap


Face and joints swollen; common side-effect of the prednisone. Hardly slept last night. Back spasms. Exhausted. Palpitations. The usual.

U of I shut down my email last week. I still get occasional messages forwarded to my other email account. A bummer regardless.

Where is the light at the end of this tunnel?

Good news is my range is slowing improving...a little over an octave now.

peace and perspective,

Sunday, February 15, 2009

32 Flavors - Alana Davis

Very cool to see more "followers" :)

Palpitations and chest pain pretty rough today. Taking ibuprofen on top of the prednisone. Face seems a little swollen, but I think the biggest change I've noticed is that my veins are really prominent, especially in my hands, wrists, arms. Really rare for me since my veins are known to be "problematic" -- really small and hard for nurses to work with.

Really tired.

Bored of my posts' titles. Now featuring my favorite songs.

"God help you if you are a phoenix and you dare to rise up from the ash"

Saturday, February 14, 2009


You know, if it weren't "xoxo" it would be "ox ox." No animal is half so romantic as an ox, or pair of oxen if you will. Haha...makes me think of the computer game Oregon Trail. I was quite fond of trading with the local natives and acquiring dysentery.

Last night I went to bed at 11:15, took 3 Advil PMs, and couldn't fall asleep until 4:30. Hands and feet really achy, back spasms, wrists sore, really dizzy. Today I've been feeling like my hands are closing in on themselves. Taking a break from reading/writing for a while...time to rest my hands and eyes.

I started the Prednisone today. Feeling a little bit better, a little more energy, at least within the hour I took it. But I'm noticing pain in places I didn't have it before. My jaw feels really tight. And my body temperature appears to change often.
Still having heart palpitations and have grown tired in the last few hours. I'm taking 15 mgs/day for 2 weeks. If I don't see improvement in about 5 days, I can stop taking it.

I'm trying not to think about the fact that it's Valentine's Day. February 14th! When I came home for the second time, on November 17, I felt certain that with a little rest and doctor's care, I'd be fully recovered by Thanksgiving: November, what, 26th? I feel stuck. Stuck in the Molasses Swamp of life. And it's not sweet!

Anyway, in honor of Valentine's Day and my deep love for childhood movies, I just watched Babe. A classic! The music is great, particularly the singing mice.

That'll do, Pig.

Friday, February 13, 2009

Throwing a Tantrum

I WANT A DIAGNOSIS!!! raaaaarrrrrr. :P nyah. not fair.

So, in case you haven't heard, all of the rheumatologist's tests came back normal. All of them! Sheesh! Couldn't just one be like "slightly low" or something? Looking at allllll my tests and allllll my charts and records and everything, you'd think I was "healthy as a horse," as these brainless lab people keep telling me.

AGH. frus. tray. shun.

The rheum. is putting me on Prednisone--like the Superman version of Ibuprofen. There are like 30 side effects. What the heck. This is absurd.

We've got an appt for 11am Monday to do some more tests (yippee).

Oh yeah. Today: Last night slept 11.5 hours. Still tired, I don't even feel like I look like myself any more. It hurts to smile. Not okay. Headaches, chest pain, dizziness, vertigo, numb fingers and feet, back pain, joint stiffness, etc etc.

Recognizing "To Write Love on Her Arms" Day -- always the day before Valentine's Day --

"everything's gonna be all right, rock-a-bye"

Thursday, February 12, 2009

Woah-oh, Livin on a Prayer

Slept 10 hours last night. Had a very strange dream about musicals at SHS.

Really sensitive to light today. Squinting as I type this. Went outside, and even though it was overcast, still felt very bright. We're looking into opthamologists in the area. Dizzy, tired, chest pain to no end, ear-ringing, stomach aches.

Fighting the optimistic vs. realistic battle on the CLC issue. Class tomorrow 9-noon. This is the last chance to take a class until May. Maybe it's just me, but I still think getting healthy is way more important than getting a couple Gen Ed credits. Some people have the feeling that by being away from school for so long, I'm "feeding" my school "phobia." Phobia, my butt. I would KILL to be back at school. Honestly. Not being able to read is eating me from the inside.

You watch a couple "What Not to Wear" marathons, trust me. You'll be begging for Faulkner.

I'd like to give a shout-out to the birthday boy, good ol' Abraham Lincoln...200 years young and doesn't look a day over 60.

sorry for the lame-wad joke,

Wednesday, February 11, 2009

Peanut Butter Jelly and a Baseball Bat

I now realize my spelling error from yesterday, but those vials really are vile.

Slept until noon today, a good 12 hours. Still don't feel rested when I get up though. Very, very tired and dizzy today. Lots of chest pain, palpitations.

Pizza for dinner!

signing off,

Tuesday, February 10, 2009

Jump on the Bandwagon!

Hello. Welcome.

FAMILY! Hi. Yes, it's now 100% official and public. Sorry I didn't email you all sooner. Yep, the rumors are true. That diseased Trevor kid has a "blog." It's short for web-log, as in a log, or journal, that one keeps via the internet or "blogosphere." That's about the extent of my blog knowledge.

The address for my blog is

You don't need to be a "member" or anything to read my blog. Feel free to add it to your favorites or spread it all 'round the family conifer.

The following devices are faces... :) .... :( ... =D ... :P ... >.< ... ^_^

For short-hand acronyms or slang references, I suggest ... or just ask me. You can leave comments on the blog itself (visible to everyone), or contact me via email ( or on Facebook (Emma Trevor).

The column on the right can guide you through all my past entries. I do have some privacy settings on blogspot, though. People can't just search and find this blog. They need the actual hopefully not too many creepers. No worries =)

All right, without further ado,
Today, Tuesday. 2/10/09

Woke up at 6--nightmares. Unable to get back to sleep. Bummer to get only 6 hrs of sleep. Trying to get on a more normal schedule, but my body just won't have it! Mom and I walked outside for 32 minutes. SO WARM! And windy. I look plain silly in baseball caps, and (for the moment) it's too nice for a winter hat. Still thinking about doing something super dramatic with the hair I have left.

Symptoms today: bad headaches, dizziness, heart palpitations, chest pain to the extreme, fatigue, trouble concentrating, um...yeah. see previous days.

This is what you really wanted to read.

Dr. Bodkin seems great. Listened to the saga and checked out my records (says the bulging disks are not a big deal!!! whaaaat?!). Took 8 viles of blood for testing. Will have results next week. Tests include psoriasis, arthritis, tons of auto-immune stuff, um, rare disease stuff, antibodies... ...yeah I wasn't there mentally for the last 40 minutes or so. Tooooo tired.

I update this blog every day. Will be sure to keep you posted. Posts are never this long, I promise!

love and more love,

Monday, February 9, 2009

Hot Chocolate

Last night I slept for 11.5 hours. Weird dreams, but no nightmares. Yay!

Today has been very, very tiring. Fewer palpitations, but lots of headaches. My eyes and ears are still very sensitive. Silverware and plates are the worst.

Today I discovered the stash of hot chocolate in our pantry: well over 50 packets of hot chocolate!! I plan to enjoy as many as I can before winter's over and hot-choc becomes obsolete.

*Rheumatologist appt tomorrow!* Prayers are appreciated. I have a feeling this will be a turning point in the saga of the plagued polio child.


Sunday, February 8, 2009


A great big round of applause to Coldplay and Adele -- the two artists I was rooting for at the Grammy's tonight. Great performances both...and award-winners!!

Today Mom and I went for a walk... 35 MINUTES!! And the first 10 minutes consisted of crazy-fast power walking. Quite wiped out by the time we got home...and my hips don't lie. I'm gonna be sore in the morning. So sunny! Very nice. :)

Today: dizziness, massive headaches, difficulty reading, shortness of breath, heart palpitations, chest pain, stomach pains, really heavy eyelids/my eyes just look really swollen. tiredness, muscle weakness, a little numbness, hair still falling out. Chest pain is my biggest complaint right now. I've only been sleeping 8.5 hours the last couple nights...significantly less than my normal 10-12.

Cell phone is back in working order.

Mom found some interesting information on Guillain-Barre Syndrome...will definitely ask about it at the rheumatologist's on Tuesday.

viva la vida,

Saturday, February 7, 2009

Save the Whales

So warm out today! Walked 20ish minutes. Gotta get a dog who has more stamina than me. Ze fluffer-pup pooped out halfway home.

Same physical symptoms as yesterday.

Fantasizing about making cookies. Maybe I'll rest up and get to it tomorrow.

peace out,

Friday, February 6, 2009

Thank You, Tiger Balm

Set my alarm for 7 this morning, ample time to get ready for class at 9. Unfortunately, the buzzing found me in the midst of a series of horrific nightmares. Sweating, heart-racing, the whole nine yards. Really achy. Eyes felt very heavy and I felt compelled to defeat the dream, so I went back to sleep. An hour later, Mom came in to wake me and I think I screamed. Just major bad news all around. Still in pain, took a couple ibuprofen, slapped some more tiger balm on my torso, and wrestled with the freaky dream for another couple hours. Awoke feeling totally wiped out. (That tiger balm stuff is great though--like menthol for your muscles.)

Will try to go to class next week if possible.

Otherwise, lots of dizziness/vertigo today, vision problems, hard to read and concentrate. Experiencing more and more short-term memory loss, constantly forgetting the point I was trying to make in a sentence, and brushing my teeth twice.

The cell phone charger my mom and I share has mysteriously bit the dust. Please call on the home line for the coming week. We're almost at the point where we can get new phones for sense in buying a new charger until then.

Malcolm in the Middle makes me feel better about my entirely dysfunctional family. :)

Walked outside today 20 minutes! So much warmer than a few days ago.

listening to u2's the joshua tree over and over,

Thursday, February 5, 2009


Couldn't sleep last night, despite the snooze meds. Lots of back pain and nightmares...esp about stevenson. weird.

Today, surprisingly a bit perkier. Got a rheumatologist appt for next Tues. If it doesn't go so hot, we're seriously considering the Mayo Clinic in Minnesota. Like to hear that my health is so important :)

Feet, right hand, and nose have been completely numb for the last several hours. Uncomfortable.

GOOD NEWS!! I have learned how to work the DVR! it's amazing!

hoping to be well enough to go to class tomorrow? "Film and Society" 9am-noon. Don't usually get up until 10:30, but we'll see what happens.

joan of arcadia!

Wednesday, February 4, 2009



I'm trying to keep positive. Sorry I haven't been calling or returning calls. Just not interested in talking about my health. That's why I'm keeping you can be informed.

Still very tired, very little energy; chest pain. Walked around the house a bit, stopped after 10 minutes due to developing headache.

I think if I'm going to shave my head, I might dye my hair purple first. ;)

Able to sing a lil bit today. Range is about half an octave, but hey, I'll take it.

My GP called today, suggesting I come in for a diet consultation. Idk if that's affecting me much, but whatevs.

Oh. And my pastor's leaving my church in June. And my pastor's family! Meaning their children! Hello?! Not okay! Those kids are some of my favorite to babysit for. *sniffle* Maybe if I get better I can sit for them one more time.

Oh, life. Where did you go.

burying my head in my hands. again.

Tuesday, February 3, 2009

I Believe Every Month Should Have an Obscure Rodent Day

Very, very tired. Hard to keep eyes open.

Lots of chest pain and palpitations.

Hoping I get a spurt of energy soon.

thank God and great chefs for delicious chili,

Monday, February 2, 2009

Tar and Feathers

The neurologist appt did not go well. Butthead.

He said that he was not the doctor to see; I should go to a rheumatologist. Then he proceeded to ask a million stupid questions about my condition that were ALL already answered in the medical files we'd sent over. What a dork-brain. Stupid loser face.

Discouraged like none other. We have to wait 2-4 more months before it can be diagnosed Chronic Fatigue Syndrome. And then it's considered a lifelong condition that can just come and go at any time for no reason.

What the heck. I suck at this game.

looking for the silver lining,

Sunday, February 1, 2009

Crayon. One syllable or two?

Good news!! Legs not sore today! A little pain in my lower back, and strange recurring headaches. My heart hurts, like something's stepping on it.

BUT! Hey! I'm so happy. Walked 22 minutes today :) We'll see how things are going tomorrow.

Tomorrow!! Neurologist tomorrow!! YES!

don't forget to floss,