Thursday, October 23, 2008

Wedding Planner, Travel Agent, Student Extraordinaire

Um. Well, so it’s been a few days.

The 19th was super-deliciously good. Pobably a 7. I wore heels and a skirt. :D
The 20th was mixed. I skipped school, but then was good enough to hang with some of my family. I also carved a pumpkin, which was a triumph because I was able to hold the knife and apply it with some force without slicing myself.
The 21st was bad. I don’t even know what I did.
The 22nd was moderate; I made it to my second class, anyway, but it was cancelled—figures. And then I made it to my night class.
Which brings us to today.

I hurt all over last night and couldn’t sleep, but my brain and hands were both working fine so I sat and typed up 25 pages of lists and organizational material regarding Ariel’s wedding. This afternoon, I sat and revised and printed about half of it. I’m going to make three copies of the stuff and put them in three different binders so that all three ladies in this house can feel organized and unified… and mostly like they’re not completely losing their minds.

Some of the lists are totally hilarious. My favorite is the list of things Ariel does NOT want in her wedding. Click on the link to my fun blog to read it.

Along with revising much of the wedding material, I later helped Ariel organize her thoughts about finding a honeymoon destination, which is where the travel agent thought comes in.

Oh!! And I designed a really quick logo for this goofy project I have to do in my broadcasting class. My partner decided we should do our campaign around an imaginary biodegradable toothbrush.

I only had a night class today. I made it there and we had to design a brochure for the Dana-Thomas House. Mine was totally awesome even though I hate Frank Lloyd Wright. Hooray. I was the only one who stayed late to work on that, and I also finished projects I was behind on: business card, envelope, stationary. So now I’m caught up. *beaming*

And I also made some awesome baked pumpkin seeds. Yum.

Hopefully I’ll maintain this level of functionality for tomorrow and finish up some of the other things I still have hanging.

Friday, October 17, 2008


Emotionally, my attitude is poop, and it makes me mad. (Irony.)
I need to give myself a kick in the butt.

My legs, ankles and knees hurt 65% less, but I’m back to a brain-mashing headache, bladder spasms and ouchy arms and hands. Oh well. I was ready for a change.

But I haven’t done my devotions for a couple days. Plus, I haven’t journaled for a couple days either, which makes me overwrought, and I need to get some fun books (for when my eyes unblur enough to read) because that always affects my morale, too. And I despise being unorganized, so I need to make a master list of the things that are floating around in my head regarding the next three months. I better do something quick, because chocolate ice cream didn’t fix it, so it’s a toughie.

Once I deal with all that, I know I’ll feel better. Maybe good enough to vacuum my bedroom.

Apparently Gary’s doctor is also the doctor I just went to who wasn’t very helpful, so that avenue has been boarded up. I got a call from Auntie saying someone at a government office actually whispered a name of a doctor to her. We’ll explore that possibility. I got a couple recommendations of doctors in Wisconsin and Missouri.

It’s not hopeless, but it’s making me MAD that I can’t get any kind of documentation from a doctor to help me with school. They all acknowledge that I'm clearly sick and in agony, but since none of them are actively taking over my treatment, they keep passing me around and won't get involved. Argh!!!! I have no idea what to do.
Okay, I still can call my primary care physician and see if she'll help... otherwise, I'm totally at the end of my line.
I guess if that falls through, I have the phone number for a counseling hotline through St. John’s for SCI students. I can give them a call and see what they would suggest.

I found Helpful place. They have a chatroom, too. That experience was both encouraging and depressing. The book I’m currently reading is so well-researched and deep that it’s also depressing.

God is good. He has perfect timing. He uses weak vessels. He is conforming us to His image. He works in mysterious ways. Financial or governmental issues are absolutely no hindrance to His plan. Patience, stupid sheepling.

Tuesday, October 14, 2008

In Your Forty Paces

So I shuffle in by myself, covering about a foot of carpet for every three steps.
There you are.
Young. Middle Eastern. Male. Smart white lab coat. Daytime TV soap looks. The whole bit.
You’re exiting the building; I’m heading through three bowling alleys of sliding glass doors.
You’re watching me.
And yes, unless you can teletransport through glass, we’re going to have to pass each other at some point.
Um, you’re still looking at me.
Okay, fine. It’s not like there’s much besides poop-brown carpet to look at anyway.
Sorry, but I’m concentrating on not hitting the glass doors.
I look back up and— what is your deal?!
You’re smiling, huh?
So I travel like a sloth. If it’s that amusing, you could get me a wheelchair.
Fine, I’m not a grouch. I can squelch pain, hobble and smile at the same time and I’ll prove it to you.
Look at that, we both deicide to be polite and pleasant and exchange hellos at the same time. Wouldn’t Miss Manners be gratified.
You stride past, and I shuffle on.
Now here’s the question: Was that all because you were checking me out, or because you were mentally diagnosing on the fly?

The Symptoms

Today was a 2.35.

I was searching for an analogy for how I feel. Have you ever seen the Gloucestershire cheese rolling competition? As far as I remember, it goes like this: Someone launches a cheese wheel down a grassy cliff. Then a bunch of brawny Brits fling themselves down after it. Appendages go flying everywhere. It’s a paramedic’s heyday.

I feel like the battered wheel of cheese waiting at the bottom to be crushed by a mass of flying flesh.

I think maybe this morning God traded my 21-year-old joints with my 80-something-year-old grandma’s. Did I mention she’s at least 10 inches shorter? It wasn’t a good fit.

Okay, joking aside, I was having a rough time walking at all today.
I don’t like having arthritic joints. Mwaaa. I’d noticed over the last week I’d been having more and more trouble navigating the basement stairs at Auntie Karen’s, but today was by far the worst my joints have ever felt.

Um, oh. The other thing was that my breathing was disturbingly irregular.

But I had an appetite. I made some morale-boosting pizza. Yay. And I slept for 12 hours. And I managed to wash my hair and get dressed like a big girl. There were many triumphs today.

Well, so I had my appointment today.

Isn’t it great when you go in with a totally non-confrontational attitude, open-minded, giving the benefit of the doubt… and are responded to with antagonism?

Hello, sorry, I didn’t even bring up the word “Lyme.” I handed you my western blot results and you got prickly. Um. Like, sorry for being sick and organized. Have a cow, already.
Whew. Someone has some tension. Let me make you some soothing tea and I’ll be on my way.

I don't know if you've heard about it, but there’s this cool thing in our society: I will totally respect you. I am happy to hear your opinion and diagnosis. But, legally, I don’t have to agree with you. Yet.
Trust me, that’s very cool.

Anyway. I’ll let up. Maybe somebody was just having a rough day. But if I hadn’t already been through YEARS of this from dozens of other specialists, it would have totally thrown me.

Nevertheless, I have a huge respect for those in the health-care field, I honestly do. It’s a big responsibility, and you have to deal with some disgusting tasks and frustrating people. Those of you that do your job with a gentle, cheerful and compassionate nature really make a wonderful, lasting impression on your sick patients.

Do they teach classes on relating to patients… like Empathy 101, or Doctor P.R. or something?
I hope they do. If not, here’s a good tip: Please don’t treat me like a Petri dish.
I have feelings, as you proved when you rapped with abandon on my already-agonized legs.

Because I promise, as much fun as it looks to walk like a cripple, stay up allll night, and have to be driven everywhere, this really isn’t what I want to be doing with my “prime” years.

Monday, October 13, 2008

An Old Lady on Chocolate

Yesterday was pretty not good. (Like… 3.45.) I missed morning church service.
:( Then mom drove me over to Auntie’s where I slept for a couple more hours before evening church. Then I was able to drag myself to church and sing and stand and sit. Yay.

Last night’s symptoms were really bad. I felt itchy inside and had weird swollen hives outside. My left pinky toe kept throbbing and then going numb… and then prickling as it woke back up and then starting the succession again. I was restless beyond measure, I couldn’t stay in one position for more than five or six minutes without something new throbbing.

I tried to get some relief with a warm bath—while it relaxed my muscles, it tortured my nerves, but at least it changed how I was perceiving pain. Couldn’t take a normal breath, of course. Maaajor pain in my legs and shoulders. Overheated and clammy; burning, then chilly, roasting, then chattering. I only ate a cup of cereal all day, plus two little “fruit leather bars”.

I finally fell asleep at 5:30 this morning and slept for exactly eight hours. I laughed. I’m wondering if I’ll eventually just cycle on through and have a normal-people sleep rotation. On the plus side, on the nights when I’ve haven’t tried to fight the insomnia, I’ve been getting tons of things done in the evening and not having the huge horrific nightmares at 3 and 4 a.m.

Very early this morning, I was able to do some homework, do my Bible study, do some digital developing for my last very overdue photo shoot, do some sketches, change my bed linens, tidy up a few things in my room, look up some song lyrics and write two “When I die” letters to friends that will really need to hear some things.

As much as I agree with you out there who are saying that I should get back to normal sleep routine and not sleep through the day… I still have to acknowledge the fact that this is the most work I’ve gotten done in two weeks.

Today, when I woke up at 1:30, Ariel and I trekked over to Auntie’s; Ariel to use their high-speed connection, and me to read in a new environment. As far as the days have gone, this one wasn’t bad. I read part of a book, I can type, I actually ate some food.

I am having serious trouble walking up and down stairs—I feel like such a little old lady. My OTHER pinky toe is now the one who is fading in and out of consciousness. I am getting very strange visual input today including spots, phantom glowing swirls, and blurriness. If the pattern holds, in a couple hours, I will reach the worst stage of the day, and then it will get much better around midnight.

I’ve also made quite a discovery: CHOCOLATE IS AMAZING.

Now, this isn’t news to most of you, I’m sure. But I don’t consume much caffeine, so I am surprised after I eat some chocolate and suddenly I can process information a little faster and feel a little happier to boot.


My appointment is tomorrow. A lot of things with school hinge on this, so I praying that it works out. We'll see. I'm not too worried about it, regardless. I know who holds tomorrow. ;o)

Saturday, October 11, 2008

Doomed to Repeat it

I was feeling okay today (5.75). Among other errands, I picked up another book about Lyme (Weintraub’s Cure Unknown)—this is book three in… two weeks?

This one had a huge amount of front matter, so after reading a chapter’s worth of material, I’m just beginning chapter one. There is this great quote from what I’ve simply designated a “bad guy” in the Lyme debate.
In response to a comment about a girl with muscle pain and weakness and other symptoms, who had already been treated for Lyme, Ehrlich says on page 12, “What is described may be many things, but it’s not Lyme disease.”

He continues,
“We would all be better off without the patient advocacy agencies that have sprung up for chronic Lyme disease, fibromyalgia, chronic fatigue syndrome, and other fictitious illnesses… As Leonard Sigal, a real Lyme disease expert, states, ‘The romanticism of practice by anecdote, speculation, and “my experience” is not a viable alternative to the rational practice of evidence-based medicine.’”

Ooooh!!! Doesn’t that just frost your hiney?

It immediately reminded me of a pompous quote I’d read five or six years ago in Ruth J. Abram’s book Send Us a Lady Physician. This quote dates back about a century and a half.

“Higher education for women produces monstrous brains and puny bodies, abnormally active cerebration and abnormally weak digestion, flowing thought and constipated bowels.”
—Dr. E. H. Clarke

Hopefully some day soon, Ehrlich’s comment will be considered just as ridiculous as Clarke’s.

Friday, October 10, 2008

Even when I slept, I dreamt that people were trying to wake me up.

Wow, what a day.
Today was about… a 4, I’d say. But I was productive.
I have to write this out tonight because I already am losing the concept of what amount of time equals today. Before today, I’ve never EVER had a point where I seriously could NOT get out of bed. It almost felt like I was drugged or something—I couldn’t even tell if I was awake or asleep and dreaming; I guess that’s what severe sleep deprivation will do to ya.

I know that doesn’t make much sense, but I’m working with about 20% brain function right now, and I need to make sure I get some facts out for my future reference.

Last night (the early morning of Oct. 10, technically) I didn’t begin to fall asleep until 4 a.m.-ish. Bad, bad insomnia. But I told myself, “Okay, it’s not so bad. I have the day off school tomorrow, I can sleep in; it’s not the end of the world.”

But mom called me (earlier than I had wanted to wake up) and wanted me to go do something for her; got up, got dressed, task completed, back to bed, almost asleep, flinching and drooling— Ring Ring. Another call. The whole day was a miasma of near-sleep, half-dream-state where I was slogging through tornadoes, hurricanes, floods/mudslides, and earthquake wreckage in huge amounts of pain, interrupted by real-world phone calls for which I needed to utilize some brain power.

The Doctor Calls Saga:

I took my last dose of antibiotic today. My next appointment is five days away. My symptoms are getting worse. (Which is a good thing when relating to Lyme. It means some little bad guys are dying.)

Four days ago I phoned in a refill request to the neurologist who had prescribed it. They wanted to first consult the infectious disease doctor who I’ll be seeing on Tuesday.

I thought it had been worked out and taken care of. Went to the pharmacy the next day, nothing. Poop. Pharmacist is used to seeing me in there; took pity on me and gave me three pills to tide me over.

Two days ago I made lots of phone calls to try to get my schoolwork situation worked out. The counselor was TOTALLY nice and helpful, but there’s still basically nothing she can do if I don’t have any documentation. I need a doctor sympathetic to my plight to say, “Hey, she’s a dedicated student who is scheduled to graduate next semester, and you need to work with her to help make that happen.”

Yesterday, the neurologist’s nurse left a message that she was having trouble contacting the infectious disease doctor.

Today, due to mom’s prompting, I called my primary care physician’s nurse to see if they would do anything for me. Nope. (As I expected.) “We can’t usually give refills for things we haven’t diagnosed or medicine we didn’t prescribe.” Fine. Thanks. Have a nice day.

Then I called the neurologist’s nurse. She’s amazing. She’s gonna have a dozen roses and some chocolate headed her way petty soon.

She says, “Well, I finally got in touch with Dr. so-and-so’s office. They declined to comment on whether you could have a refill or not, so we can’t really give you anymore.”

Me: “Well that’s a POSITIVE sign.” (Note the sarcasm.)

Nurse: “Have your symptoms gotten any better?”

Me: “No, not at all, in fact, they’re getting worse. My appointment is only 5 days away. I feel like if it was serious enough for Dr. Neurologist to prescribe some antibiotics, that I should probably continue on them until we hear otherwise.”

Nurse: “Oh, I’m so sorry you’re feeling so bad. I didn’t know how your symptoms were doing. Well…”

(I can practically hear the wheels turning in her head.)

“I think we could give you five days… but…”

(I’m praying really hard right now.)

“Here. I’ll just call in 30 days to your pharmacy so that your co-pay can take care of it. And then if he wants you to stop it after your appointment, you can.”

Me: “You rock! Thank you so much.”

So. I have more doxycycline in my possession. And an appointment on Tuesday. And a school counselor that is willing to work with me if I can get a doctor’s cooperation.

Tomorrow I’m either going garage saleing (riding in a wheelchair is starting to look REALLY appealing to me) with Ariel for things for her house, or I’ll be doing butt-loads of research and making a bunch more phone calls getting ready for the upcoming appointment, or probably both.

Wednesday, October 8, 2008



In class. Mom drove me.
I fell asleep before class and grouched at her when she woke me up.
Can't think.
Can't breathe.
Called yesterday to get refill of doxycycline--sounded positive.
Hadn't been called into pharmacy.
Got a couple to tide me over.
Can't hold my neck up.
I'm volunteering at the library tomorrow... or something; I have no idea what's going on.
Class tomorrow night.
Staring into space.
Blob child.

I think I need to talk to people/professors/advisors about doing schoolwork at home... because I really shouldn't even be here.

Monday, October 6, 2008

On the fritz

Last night I lost it. It was about a 2.95.

I was already in a lot more "Lyme pain" than normal. Then, in the afternoon I felt like I was having an out-of-body experience. I had this mental image of me pitching forward off the escalator. Then I saw huge constellations of pre-migraine aura lights. Then, in the evening service at church, the pain was crawling across me. So then the whole meat-hook to the neck pain of a migraine attacked post-service.
Plus, as Laban's daughter Rachel once said so elegantly, "the time of women is upon me," so there's another bout of pain that helped tip the scales.
So it all combined and made me bawl my head off and freak out my family (and future brother-in-law).

Other symptoms last night:
Snapping, flinching of nerves just like I felt in the nerve conductivity test, minus the electrical pulse apparatus.
Irregular and elevated heartbeat.
Muscle weakness.
Random muscles all over my body would start twitching like crazy.
Double vision and blurry eyesight.
Excessive sensitivity to any kind of stimulation: touch, light, sound, smell, taste.
Muscle tension.
Couldn't breathe easily.
Trouble swallowing.
Itching of throat and inner ears.
Assorted allergies.
Again, insomnia.

Some days I just wonder how I can continue getting up and going to school, but if I don’t… I’ll lose my health insurance. At least, that’s how it’s looking to me. I’m so glad God is in control of all this, because it’s looking a little gloomy from my end.

On the plus side, I’m feeling quite a bit better today— got dressed, got some homework done, able to type, (from a computer at school, indicating I’m actually AT school), and drove to school (and on time, I might add) which has been a rare occasion over the past few weeks.

Saturday, October 4, 2008


Mm, about a 6.45 today.

I went on a couple errands today with Ariel, and I was able to use a gift certificate to get one of the most gorgeous journals ever from Barnes and Noble.
Then we went for a walk in the park.
I was able to get out and move today, but I felt BRUISED everywhere. Like, badly. Like Ariel smacked my back just hard enough to kill a mosquito and I yelped and had to fight tears.
But I had some energy since I slept past noon... I know that sounds horrible. But we were able to do some goofing off together. Check out some of the results on my other blog. You'll find a link to it on the upper right-hand corner of this page.

Friday, October 3, 2008

Farb-fest pseudo-camping

Today was probably a six.
I finally fell asleep this morning around three thirty or four, I think.
And then got a panicked call from mom at nine. We were unexpectedly down to two vehicles, so we had to do some creative problem solving. And then I missed my two classes because I felt terribly nauseated.

But dad was sweet and drove me to church this evening, where I got a ride with Gary and Marsha to Sangchris where the young adult group is camping this weekend. I knew I didn’t have stamina to hang out the whole time (especially since temperatures have dropped and I’ve had chills and insomnia this week). So Gary and Marsha brought me back home. What a blessing!!

I miss camping out. And wood smoke. Mmmm. Cozy. I’m looking forward to some sleep.

Thursday, October 2, 2008

Productive but Painful

Today was... about a 4.63.

My joints hurt so bad they make me want to cry. I don't think I took a normal step all day. It's a really weird sensation; it feels like there are huge tourniquets around my knees cutting off circulation to everything else.
And I was so dizzy I would almost completely fall over from a standing position.

I made some Lauren-safe peach cobbler kind of like Hardee's, which was quite yummy. Food boosts my morale significantly.

I FINALLY designed a tolerable logo for myself for a class project. I ended up using GIMP because the program we're supposed to use in class is actually for page-layout and wouldn't do what I wanted. And in class I came up with a decent masthead (the big title-y part) for the school paper, which we all had to do for a contest.

So I got through the day with something nice to show for it. :o)

Wednesday, October 1, 2008

A Solid 5.25

I'm creating a new scale. One means I am miserable and useless, and ten means I am feeling on top of the world and satisfied with the amount of things I was able to accomplish


Today was about... a five and a quarter.

Went to school, went to Auntie's, did some research, went to church, went back to Auntie's and ate ice cream with the Willems and JEK.

Major pain/itching/stinging of my scalp all day--how frustrating to want to scratch it, but knowing that it will do nothing except make me look like I have fleas.
Pretty severe chills/feverish feeling all day.
Jerky head. Grr.
About as much energy as a petunia. Maybe less. (Can one fall asleep sitting backwards in a pew chair, resting one's head on the back? I'm inclined to think one can. And almost did.)
Just took my antibiotic; now feeling super pukey with a smashing headache.
But on the plus side, my hands didn't hurt so bad!

And I had a super good laugh with the Willems and JEK as I recalled some of the good quotes from the emergency surgery I had when I was 15.

God is gracious. I'm actually thankful I don't have a significant other right now to drag through this mess. And how cool is it that if I can't have a normal job, I already had time earlier in life to learn how to get things published as a freelance writer?