Monday, September 29, 2008

Yesterday's Journal Entry

This is the entry I wrote out in my journal last night as I was contemplating and reevaluating my life.


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:
  1. I've always thought I would die young anyway
  2. God is working on my heart for a good attitude about it
  3. "...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!

The Beginning

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
  • nausea
  • 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.

Present Day:

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!!!!*
--2:00 a.m.

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