Friday, November 28, 2008

Today is probably less than a one.
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.
Freaking out.

Friday, November 14, 2008

Today’s Accomplishments

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:

  1. SLEPT!!!! AAAAHHH! I forgot how fabulously cozy that can be. What a gorgeous feeling!

  2. 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.

  3. Made it through both class periods just fine.

  4. Had a great surprise talk with the ever-encouraging J. Pierce

  5. 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.

  6. 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?

  7. Typed out some Bible verses for future reference.

  8. Started digital developing on some senior photos I took a couple weeks ago!

  9. Got caught up on my health (or lack thereof) blog

  10. Ate some food. Big girl!

  11. 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.

  12. 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.

  13. Boogied with Ariel to Rockin Round the Christmas Tree. (This time without nearly passing out.)

  14. And the night is still young. Well, wait. As soon as it’s morning, the morning will still be young.

  15. But I…think…I may have some potential of sleeping again tonight. Wouldn’t that be the coolest ever?

It’s like a horror movie: you run and run but they’re still following you


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.

Attitude Adjustment

So yesterday was obviously rough.
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:

James 1:2-5
“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.”

James 1:12
“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.”

James 4:14-15
“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.’”

James 5:10-11
“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.”

Chin up.

I had a really rough evening. But then it got better.
More on that later.

New symptom:
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

Sickly Gorgeous

….It looks like we’ve exhausted our options in IL. I now have an appointment in January for an LLMD in Missouri…

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.

I’m cured.

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.
Despite the sarcasm, I’m not bitter. Honestly. I would be laughing myself silly right now if I knew I’d still have a heartbeat and be able to breathe afterwards.

About school

I’ve always heard that if you try really, really hard at school you’ll succeed. Because there are tons of organizations and school policies and methods of assistance that are there solely to help you achieve your academic goals.

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

A 4-day

Mixed results over the last couple days.

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

Now offering a new and exciting symptom!

Well, my throat feels like it is paralyzed or something. Maybe that’s too strong a word. It feels like the next step up would be paralyzed. It feels like the worst “lump in the throat” from crying I could ever imagine. But I haven’t been crying.

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

Standing (or sitting) on the Promises of God

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.
What weirdness.

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.