Monday, December 22, 2008
March 17: 9 a.m to noon, lab work from 12:30 until 1-ish
March 18: 1-4 p.m.
March 19: 2-4 p.m.
There is a substantial out of pocket expense to cover these three days, so please pray that we’ll be able to come up with this cash. On the plus side, this doctor (unlike many others) is willing to submit the fees to our insurance company to see if they’ll reimburse us for anything.
I haven’t looked into details of where we can stay. I know that some hotels will probably give us a discount if they know we’re visiting that doctor. Does anyone have any info about Calvary Bible College’s policies about guests? I think it might be a good time to drop in on some friends. ;-D
Final thought: I’m still in limbo about where I might spend a few days after Ariel’s wedding. Mom and Dad are going to the Creation Museum (I’m trying super-hard not to pout) and I don’t want to stay home by myself. And it probably won’t be fun for whoever I’m with because it’s quite likely I’ll be a wreck mentally, physically and/or emotionally. *sigh* You could pray about that, too.
Sunday, December 21, 2008
I love doctrine and learning deep stuff about God’s nature; how it shapes life as we know it, and how it ought to shape us. I love that kind of thing. I could spend most of my day devouring it.
In fact, I used to sneer a little at the “milk of the word” style of teaching. Looking back on that now, I'm totally grossed out. BAD Lauren! Pride is a yucky insidious thing. Disgusting.
I have a new addition to my pool of favorite songs. I think I want this one at my funeral.
Here are the lyrics, but you totally have to hear it to appreciate what I’m trying to say.
And on days when I wonder? Yeah, I know what it’s all about.
About the goodness of the Lord
Come on children, let’s shout
All about God’s rich reward
Guide our footsteps everyday
Keep us in the narrow way
Tuesday, December 9, 2008
Tonight I talked to a lady who has Lyme that Aunt Becky knows from work. She’s a Harley rider, skydiver type and was out of the game a couple years ago. Aggressive treatment not only has her walking again, but she says, “There’s nothing I can’t do anymore.” I’m just thinking it would be nice to be able to do a fifth of what I used to. ;o)
Not that I’m complaining! I can still digest my own food, maintain my own hygiene, pretend to have a brain and even masquerade as a human some days. God is good to me.
Symptom-wise, this evening was pretty horrible with the agony in my legs and hips. But I hobbled around the grocery store just because I could. “Life is pain, Highness. Anyone who says differently is selling something.”
I’m cheerful about working on finishing up my senior portfolio pieces (the Incomplete), and working on a long-overdue senior portrait gig, three exciting Christmas presents and a wedding gift. Plus a bunch of really super-fun writing projects that I haven’t had much time for.
Thanks for praying. I know you must be, because I am in excruciating pain and have a cheerful and joyful attitude—that’s God at work, people.
Monday, December 1, 2008
2) I also have a Request for Incomplete that I'm filling out and will drop off in my professor's mailbox when I go in this afternoon. Then he just needs to fill out his part and turn it into the registrar's office.
3) Today we also need to get test results from the doctor.
4) For Wednesday: I have
*completed updates of school blog to my satisfaction
*completed half a magazine feature story analysis--which I could turn in as is and be happy
*started work on writing my feature story
*still need to polish my faux query letter a little bit and turn in final draft
*still need to sit and write the final self-reflective essay for the class
5) Thursday is my page layout/design final. Looking forward to it. Need to remember to bring book and flash drive with all my work on it.
Friday, November 28, 2008
Can’t breathe, gasping, throat constricted, inhaler just makes my heart want to explode.
Can’t think, 4 final papers to do.
Hands and arms don’t even feel like they are attached, but they hurt, so they must still be. Typing is agonizing.
Slept off and on for 17 hours but had horrible, horrible nightmares the whole time.
Throat feeling paralyzed again.
Heart hasn’t beat regularly for three days.
Face spasms, head ticking like crazy.
Neck muscles not holding my head up right.
Hallucinations all the time this past week; feel like I’m in the twilight zone, or out of body experience
Bladder has been on strike for four days.
Jaw locked up.
Past week whole back has been feeling pins and needles and then going numb.
Entirely an emotional mess.
Bawling inconsolably. Three cookies didn’t help. I should lay off all sugar.
Lonely which is stupid because if anyone were here I know I’d be a jerk to them.
I hurt so bad everywhere that I just want to throw up.
“Use your time wisely.” Yeah, sure. Great idea. Thanks a lot.
Too many rough days in a row. No breaks, no sleep, no help.
Friday, November 14, 2008
Today was a 5.15
Remember, these are out of ten with 10= best, but I haven’t seen a 5+ day in weeks. Ahh! It was fabulous.
Things to be thankful for about today:
SLEPT!!!! AAAAHHH! I forgot how fabulously cozy that can be. What a gorgeous feeling!
Went to school early for a meeting with one of my tutor classmates about what she thinks I can do to pass some of my classes. Very helpful.
Made it through both class periods just fine.
Had a great surprise talk with the ever-encouraging J. Pierce
Had a meeting to get registered for next semester. Got my schedule all worked out. It looks great, if my body/mind can get through it. Filled out a graduation application. My advisor is a very cool lady.
I can take full steps today. And I did. And I LOVED it. I would much rather have a man stride than an old lady hobble. Can you tell this made me giddy?
Typed out some Bible verses for future reference.
Started digital developing on some senior photos I took a couple weeks ago!
Got caught up on my health (or lack thereof) blog
Ate some food. Big girl!
Read an online version of the Russian fairytale Baba Yaga out loud to Ariel—well, three-quarters before I grayed out and collapsed on the desk from suffocating, but she finished it for me, so it was all good.
Also looked up “babaganoosh” which is another fabulous word to say. And no wonder I’m drawn to it, it’s food. Egg plant and sesame seed paste.
Boogied with Ariel to Rockin Round the Christmas Tree. (This time without nearly passing out.)
And the night is still young. Well, wait. As soon as it’s morning, the morning will still be young.
But I…think…I may have some potential of sleeping again tonight. Wouldn’t that be the coolest ever?
Okay, so bump in the road. We thought we were totally done with this doctor here in town. Guess not. There had been some weird issue where some of the tests he had ordered hadn’t been performed, but that happened to us at my last meeting with my primary care doc, so we were like, “Ookay, that’s weird. Oh well. Been great knowing you.” (Little bit of sarcasm, there.)
But. Got a call from his nurse last night. Returned it this morning as Dad drove me to class.
Apparently, the doctor had ordered a BUNCH of tests and none of them had been done, so he and the nurse realized something was up. It turns out I should have had my blood drawn an additional time for these other tests. I guess. We had never had another order form in our hands, so I’m a little confused still about how this happened/didn’t happen. Sooo. Looks like I’m gonna get to practice my pin cushion act again.
The kicker? By the tone of his voice, he made it sound a little bit like he hoped it was HIV. Which just makes me laugh for so many reasons.
But we (Dad, Mom, me) got some things talked through, and that was kind of helpful. However, I was still bummed enough to send out a txt msg at 1 or 2 a.m. to a friend asking for prayer. (If you’re willing to be on this list let me know— Talk about an instant ministry and blessing in my life!) After getting the affirmative, I settled down and read through James and II Corinthians. Here are some of the encouraging highlights:
“Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.”
“Blessed is the man who perseveres under trial; for once he has been approved, he will receive the crown of life which the Lord has promised to those who love Him.”
“Yet you do not know what your life will be like tomorrow. You are just a vapor that appears for a little while and then vanishes away. Instead, you ought to say, ‘If the Lord wills, we will live and also do this or that.’”
“As an example, brethren, of suffering and patience, take the prophets who spoke in the name of the Lord. We count those blessed who endured. You have heard of the endurance of Job and have seen the outcome of the Lord’s dealings, that the Lord is full of compassion and is merciful.”
II Corinthians 1:3-5
“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ.”
II Corinthians 4
(Yes, the whole entire thing; it’s seriously amazing. Look it up.)
II Corinthians 6:4-10
“but in everything commending ourselves as servants of God, in much endurance, in afflictions, in hardships, in distresses, in beatings, in imprisonments, in tumults, in labors, in sleeplessness, in hunger, in purity, in knowledge, in patience, in kindness, in the Holy Spirit, in genuine love, in the word of truth, in the power of God; by the weapons of righteousness for the right hand and the left, by glory and dishonor, by evil report and good report; regarded as deceivers and yet true; as unknown yet well-known, as dying yet behold, we live; as punished yet not put to death, as sorrowful yet always rejoicing, as poor yet making many rich, as having nothing yet possessing all things.”
II Corinthians 9:8
“And God is able to make all grace abound to you, so that always having all sufficiency in everything, you may have an abundance for every good deed.”
More on that later.
Major pain in the right lower part of my chin where the tissue attaches. I feel like I want to gouge at it with a butter knife.
*Edit: 2 MINUTES LATER: Make that BOTH sides of my chin. ARRRRGH
Thursday, November 13, 2008
I am gasping for breath constantly now. Insomnia and then oversleeping. Lost 6 pounds this month because I haven’t been eating anything. Sudden muscle numbness in my face and neck. My heart goes on strike every once in a while and stops working. Arms feel useless. Flinching so hard at night I’m making dents in my wall. Knees and ankles revolt at holding my weight and threaten to give out— the thought of school is overwhelming just for the fact of climbing three flights of stairs to get to all my classes.
I could go on. For dozens of pages.
But here’s the kicker.
Whew, what a relief. I can take a deep breath and get a good night’s sleep!
I think in most health circumstances, people usually consider themselves cured when they no longer have symptoms or when they stop getting sicker.
And I’ve always believed it. I mean, come on, I’ve been on both sides; I’ve been a tutor and a note taker and a study group leader. I’ve also sat for hours in the LLCC math center getting help. I’ve gone to countless office-hour appointments and done extra work to keep my grades up. I never would have made it this far without academic scholarships and financial aid.
I think I might be getting a little jaded.
I haul myself to the computer every day and try to wrangle appointments with school authorities to learn about my options, to little avail. I’ve been trying to work with the school for at least two months. I’ve made dozens of phone calls. I’m keeping in touch with my professors. I’m reading and participating in the class blogs. I’m trying to keep up with the work, but compared to my previous output, this stuff is shoddy. My parents are sacrificing their time and energy to (my jaw is locking up and my facial muscles feel like they’re immobile, ARGH, I hate that) drive me to class when I think I can stand it.
Don’t get me wrong. I have one professor and one academic counselor who are really trying to help me. But they can only do so much.
From MY end, I’m doing everything that I’m aware a good student should do that I’m still capable of doing. (The numbness is creeping down my throat, now.)
I have about three weeks of school left. I don’t think I’m going to make it. I feel like I’m on an academic treadmill of too little, too late.
And yeah, honestly? I’m wondering why I should keep trying. Oh, just the knowledge that I should. That inner drive that won’t shut up. Just the little things that have propelled me this far. But my bed looks really appealing, and I would like to work on some projects for other people who would actually appreciate them.
Saturday, November 8, 2008
Slept for 12 hours Thursday, yay. Slept about an hour and a half last night, not-so-yay. (But I had time to pray and plenty of people to pray for, so it worked out okay.)
Today I got up at 6:50 (nice to know that it can still happen). A friend drove me to a meeting of energetic financial planners, where I decided that ISN’T what I want to do with my remaining three brain cells.
And then this afternoon, I actually drove a vehicle for the first time in over four weeks (nice to know that it can still happen). I’m in excruciating amounts of pain from my shoulders up… but walking tolerably well, breathing like a human, and typing admirably. *shrug* My symptoms are like the weather in Illinois.
But I’m having really weird feelings (or lack thereof) in my face. Lips and tongue in particular. What’s the little dent in the corner of your mouth called? I don’t remember. But mine on the right side keeps feeling like I’ve got a hair in it or something. And that side of my tongue is acting up. Not counting my chickens or anything, but not really looking forward to possible Bell ’s Palsy. All my emoticons are going to have to look like this: ;-/
II Chronicles 16:8“Oh give thanks to the Lord, call upon His name; Make known His deeds among the peoples”
James 1:2-4“Consider it pure joy my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. “
Thursday, November 6, 2008
It’s a totally freaky feeling. I can tell the muscles aren’t moving much to help me swallow… praise God for gravity, huh? When I tip my head down it feels like my muscles might just seize up and shut everything off. But as far as I can tell, my trachea is still open and working as much as it has recently.
Talk about scary. Anyway, I’m still typing, so I’m still fine.
My mouth has been experiencing some strange feelings in the last two days as well. Every so often it feels JUST like a dentist is stabbing one of those huge needles into the roof of my mouth, and then a Novocain-like tingle sets in.
The throat thing is kind of freaking me out. I can feel myself wanting to cry from being sacred, which is totally stupid, isn’t it? Not only would crying NOT help the situation, God’s on top of this and it will only go as far as He wants.
I think I may go sit down and draw or something calm for a few minutes, though.
Tuesday, November 4, 2008
Okay, well, obviously I haven’t been well enough to be on here.
I would probably post more often if we had wireless or I had a connection in my bedroom, but since I have to get up and sit here, even that is too exhausting many days.
Most days have been in the 2s and 3s. Sigh. Which isn’t to say I’m not joyful about life right now. God’s graciousness is astonishing
Today was about a… almost a five. I can round up.
Current medical schedule:
Went and had more blood drawn for more tests. I know they’re redoing the western blot to see what the antibiotic did (I’m off the doxycycline now.) At one point weeks ago, the doctor mentioned testing for co-infections, but the nurse today didn’t mention it and I totally forgot to ask. An appointment next week on the 11th.
I missed classes all last week. Had a talk with the dean of students at school a couple days ago. Got some information from another advisor about who I should talk to next. Barely scrapin by with my schoolwork, but I seriously am proud of myself for even trying to stay on track.
Symptoms of the last couple weeks:
Things are generally down hill.
I have this weird rash all over, like widely dispersed hives that itch and hurt and then scab over. My organs feel like they’re alternately cramping and spasming. (About a week of this makes it very difficult to concentrate on other things, especially when I have a couple different ones going at different rates).
My heart totally stops beating sometimes randomly. Sometimes I will realize that something is really wrong and go through my vitals and become conscious that I’m not breathing and then wonder how long that’s been going on.
And then the weird one:
A couple days ago, I took a warm shower, got out, felt weird, thought I might pass out, got dressed, couldn’t breathe, sat on my floor so I wouldn’t fall off my bed, laid down, stayed there for an hour or so without moving, wanted to get up, kind of rolled over thinking I would push myself up, but was stuck laying on my stomach with my jaw pressed into my wood floor at a weird angle.
Mom and dad were just in the other room, but they couldn’t hear me calling over the TV noise. I couldn’t reach my phone, and I couldn’t get the coordination to knock Morse SOS on the floor. Mom heard me eventually, and came in and helped me get up and helped me blow-dry my hair.
Results and final thoughts:
My mom has banned me from taking showers (but I don’t take baths since they seem scarier and hurt more)… so we’ll see how long she can stand the stench. ;o)
We’re in the very beginning of looking into those shower chairs and wheelchairs. Yes, I cringe, “but vanity is pointless anyway” squeals my liver as it flutters again.
Oh the ways God gently humbles independent little girls.
Ah well. It’s all an adventure.
Thursday, October 23, 2008
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.
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 lymenet.org. 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
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?
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.
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
:( 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
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.”
“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
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.
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.
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
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.
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.
Couldn't breathe easily.
Itching of throat and inner ears.
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
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
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
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
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?
Tuesday, September 30, 2008
Today was frustrating. It was my day off school, so I slept in past noon. I had about a speck and a half of energy and couldn’t breathe. I did get some things accomplished: breakfast, worked on some long-overdue photos, made some baked mac and cheese, went for a very small walk, began looking into info about my plane ticket and tidied up my room (very slowly).
Not that I’m griping. I just need to be thankful for every single thing I can do. God is good.
Oh! I got my copy of the results of the blood work. It looks like band 41 is reactive… but I am not sure if I’m accurately interpreting the rest of the information; you know how confusing medical documents can be.
I’m trying to figure out how to balance activities and health at this point. I’m supposed to go camping this Friday and Saturday. I think I might just spend the night and have someone pick me up so that I can recuperate on Saturday since Sundays are ANYTHING but restful around here recently.
And I still can’t find my textbook. That is so out of character for me. Argh. Anyway, it’s obviously not the end of the world.
I’m so glad God has a plan, and that He’s so intimately involved in our lives.
Monday, September 29, 2008
- Really tingly, pin-prickly, itchy sensations on my scalp, back and arms.
- Totally exhausted; had to be driven to school
- Arms don't hurt so bad (obviously since I just typed out that huge journal entry and am adding another post)
- Circulation just feels tight around biceps
- Everything tastes wrong today: sweet beautiful Clementine oranges tasted bitter and once almost like dill
- So I didn't eat much of anything today: a small cup of cereal, an orange, some crackers, a fruit leather, and about a 1/2 cup of BBQ pork
- I'm really feeling emotionally upbeat and stable
- Physically, I felt weird and surreal all day
- Tried to clean up my room but only got halfway through dealing with my laundry scattered everywhere
- Started feeling sick (i.e. totally nauseated) right at 5 p.m.
- Threw up
- Crawled to bed
- Had a really nasty headache, so I utilized a cold rag and frozen yogurt squeezer as a cold pack (since we seem to be down to one rice bag... that had been left out)
- fell immediately asleep
- slept like a log for almost three hours
- woke up feeling a little better
I feel so free.
Have I mentioned how gracious God is? I could just sit and luxuriate in the thought for hours.
Where do I even begin?
Okay, the Bible study went really well thanks to God's provision through Alisha. She had just taught on temptation, so she e-mailed me her outlines with verses and quotes and everything. I worked on tailoring it down about 6 to 7 decades and bringing in some Bible verses they'd understand better. Then Saturday, it all worked out: I had energy, the girls understood the material, and it was a profitable time.
THEN, Ariel wanted some books from the library since she's ill. So I picked up a couple about Lyme disease. I got home and picked the one called "Coping with Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment (3rd ed)" by Denise Lang and Kenneth Liegner, M.D.
I read it straight through over about eight or nine hours.
And now I am 100 % convinced that I have Lyme.
Which is both good and bad. Very good to have a solid idea that I'm not crazy, and I'm not a wimp, but also bad that it's a very uncertain road of treatment ahead.
Untreated, LD usually appears (at least from what I've now read) to cause the patient to deteriorate to a life in a wheelchair and then die.
That looks and sounds a little shocking, I know, but:
- I've always thought I would die young anyway
- God is working on my heart for a good attitude about it
- "...for when I am weak, then I am strong." (2 Corinthians 12:9-10)
Not that I'm going to give up, but here are the realities of right now as I understand them:
- I have Lyme. Chronic, or late disseminated stage (meaning it's all over my body)
- This is difficult to treat because: LD hides in a cyst form, and mutates
- "Successful" treatment requires often several kinds of IV antibiotics for up to several years
- Insurance may: deny LD exists, not cover it, only cover 4 weeks of treatment, or possibly work with me
- I only have insurance as long as I am a fulltime student, which I thought would only be the end of this semester and next.
- Then I have no insurance and no job?
- Treatment may cost exorbitant prices (easily $100,000+) out of pocket.
- The wheelchair is looking like a possibility
- Even with treatment, it's unclear whether the disease is ever "cured".
- The whole issue is complicated by the possibility of co-infections of similar diseases, the government interference, the current economy, and the ways the disease is spread.
But over all, I'm SO happy. This explains so many things about my childhood I'd been feeling bad about. This explains why life is so hard for me right now. This explains why I look healthy but can barely function some days.
That SHOULD be relieving news! Did I mention how gracious God is? I've lived such a good, vibrant, fun and loving life, while possibly having had this for at least eight years. If He were here (visibly) right now, I'd wipe His feet with my hair and tears. Jesus, what a friend for sinners!
I've always had bad head- and stomach aches since at least first grade, but I was eating PREDOMINATELY food which I now know I'm seriously allergic to. Plus, I had all the allergies to inhalants then, too.
So I can't say exactly when it began.
But I can trace "the" headache I've for eight years back to a specific day.
I went pseudo-rock climbing at The Silo with the youth group when I was 13. It was either the last day of August or first of September; a Friday, I think. I didn't feel very good, but my motto is "tough it out because I never feel fabulous anyway." I don't know whether there was a one or two day gap for sure, but I believe it was the next day--the first Saturday of September, 2000.
My family went to the air show at the airport. It was HIDEOUSLY hot and the sun was waaay overly bright and I didn't have sunglasses. We went to stand in line to see the cockpit of a "flying fortress", one of the few that still flies. We stood in line for at least an hour. I felt icky. Once we got inside, my head began to really hurt. I felt super weird. Sweet Mommy gave up her spot in line to sit with me in the open cargo-hold chairs that were welded to the plane. We waited at least another hour for Ariel and Daddy to go through the cockpit.
As we waited, here is the chain of symptoms I experienced:
- headache, then severe headache
- tingling in scalp
- seeing floating, whirling, flashing lights in front of my eyes
- tunnel vision
- rapid breathing (from panic?)
- one whole side of my body went numb
- vision blacked out
- severe pain all over
- vomiting (by then we were outside on the grass; whew!)
- taste and smell disturbances
- muscle tension and cramps
So they took me to prompt care where we waited very quietly for about four hours. They diagnosed me as having a severe migraine and gave me a muscle relaxant. An hour or more later they finally gave me a painkiller. (THANK you!)
I was left for a prescription for a migraine prevention medication. Mom and Dad took me home, put me in bed, put blankets over my window to blackout my room, put clothes under my door to block noise, brought me food and water, cold rags and cold rice bags for my headache and fever, and brought barf-bowls for nausea and hankies for pain-induced tears.
I remember mom sitting and stroking my forehead for hours while I cried. She pushed my forehead up and back, massaged my face, pressed my eyes and pulled handfuls of my hair-- ANYTHING to change the sensation of agony! (What a good mom; I'll forever treasure that care.)
I stayed in bed for a week with that headache. It slowly decreased, but left me exhausted and achy. That migraine headache settled into a permanent "low-grade" (that's debatable and very subjective) headache that just a few weeks ago celebrated (ha!) its 8th anniversary.
So, like I said, I don't know if that was the true beginning (I'd been having health problems earlier in that 7th grade year), but that's the first date I have in my mind that really sticks out.
So. Wow, huh? *grin*
I'm NOT a hypochondriac and I'm NOT a wimp. Yay!
*I am so so so SO thankful for a loving, supportive Christian family and church family who have been patient with me over the years. I'm also very thankful with/for these new realizations about my disease!!!!*
Sunday, September 28, 2008
emotional instability (crying easily)
increased irritability and mood swings
sleep disturbances (insomnia, too much sleep)
sensitivity to light
getting lost in familiar places
abnormalities of smell
heightened sensitivity to vibrations and noise
lack of concentration
(I left out the ones I didn't have, but these comprise at least 3/4 of the list.)
Rather, here are the 50+ of 66 applicable questions that I answered YES to:
1) tick bite
2) rashes on other parts of body
Head, Face, Neck:
3) headache, mild or severe
4) twitching of facial or other muscles
5) tingling or nose, cheek or face
6) stiff or painful neck, creaks and cracks
7) jaw pain or stiffness
8) sore throat
9) double or blurry vision
10) increased floating spots
11) pain in eyes, or swelling around eyes
12) oversensitivity to light
13) flashing lights
14) Pain in ears, oversensitivity to sounds
15) Ringing in one or both ears
Digestive and Excretory System:
18) Irritable bladder (trouble starting, stopping)
19) upset stomach (nausea or pain)
20) joint pain or swelling
21) stiffness of joints, back, neck
22) muscle pain or cramps
Respiratory and Circulatory:
23) shortness of breath, cough
24) chest pain or rib soreness
25) night sweats or unexplained chills
26) hart palpitations or extra beats
27) tremors or unexplained shaking
28) burning or stabbing sensations in the body
29) weakness or partial paralysis
30) pressure in head
31) numbness in body, tingling pinpricks
32) poor balance, dizziness, difficulty walking
33) increased motion sickness
34) lightheadedness, wooziness
35) mood swings, irritability
36) unusual depression
37) disorientation (getting or feeling lost)
38) feeling as if you are losing your mind
39) overemotional reactions, crying easily
40) too much sleep, or insomnia
41) difficulty falling or staying asleep
42) memory loss (short or long term)
43) confusion, difficulty in thinking
44) difficulty with concentration or reading
45) going to the wrong place
46) speech difficulty, (slurred or slow)
47) unexplained menstrual pain, irregularity (I do know I have endomitriosis)
48) extreme fatigue
49) swollen glands
50) unexplained fevers (high- or low-grade)
51) continual infections (sinus, kidney, eye, etc.)
52) symptoms seem to change, come and go
53) pain migrates to different body parts
54) early on, experienced a "flu-like" illness, after which you have not felt well
I sleep in until 8 or 9.
I get up and wait a few minutes until my eyes go from red to white.
I find some clothes.
Put a couple things away.
Do the outdoor chores.
Eat some wheat/corn/soy-free breakfast.
Try to do some homework.
Make the excruciating drive across town to school. (My hands won't close properly on the steering wheel.)
Sit through two hours of classes, with the objectives of:
trying to breathe
retaining auditory info because my hands hurt too bad to take notes anymore
Eat a fruit leather bar or granola or something before heading home.
Make the excruciating drive back across town home.
Contemplate doing some homework
Decide not to and take a nap.
Have supper at 5 or 6.
Do some textbook reading or make the drive back across town for a night class.
Check e-mail for homework and other project info.
Do my personal Bible study.
Type out a to-do list or list of accomplishments... if I can type that night.
Read, journal or pray until 1 or 2 a.m., depending on how awful I feel.
Wake up at 4 a.m. with horrific nightmares.
Spend an hour or so trying to stop crying, shivering, and hiccupping.
Go back to sleep.
Wake up at my alarm and start it all over.
People ask "How're you doing?" Aside from the matter of whether they actually care enough to hear the true answer (which I've covered in other blog posts), it's waaay too time consuming and sounds very self-absorbed to give an honest answer.
So now I've started a whole blog to list how I'm doing. How self-absorbed does that look?
And is it cheating to refer you here when you ask how I'm doing?
But this also does have the secondary purpose of functioning as a health journal, to document my... (decline?) symptoms. Apparently some doctors appreciate this.
That's the point of this experiment.