Tuesday, September 30, 2008

God will take care of you...

I had the worst chills ever last night. I put another blanket on my bed and still couldn’t get warm. I must have finally fallen asleep, and when mom woke me up I had a fever.

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

Symptoms of Today

  • 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

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.

Sunday, September 28, 2008

Neuropsychiatric Symptoms (pg 73-74 of "Coping")

Major depression
extreme fatigue
emotional instability (crying easily)
increased irritability and mood swings
sleep disturbances (insomnia, too much sleep)
sensitivity to light
getting lost in familiar places
dyslexia-type reversals
night terrors
ferocious nightmares
suicidal thoughts
mental fog
violent thoughts
abnormalities of smell
heightened sensitivity to vibrations and noise
spatial problems
lack of concentration

(I left out the ones I didn't have, but these comprise at least 3/4 of the list.)

Qeustionaire from "Coping With Lyme Diease" page 25-28.

I won't bother to type out all the questions.
Rather, here are the 50+ of 66 applicable questions that I answered YES to:

The Bite:
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:
16) Diarrhea
17) Constipation
18) Irritable bladder (trouble starting, stopping)
19) upset stomach (nausea or pain)

Musculoskeletal system:
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

Psychological Well-being:
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

Mental Capacity:
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)

General Well-being:
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

An Average Day

For reference, right now, an average day looks like this:

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.
Check e-mail.
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.
Wake up.
Have supper at 5 or 6.
Do some textbook reading or make the drive back across town for a night class.
Come home.
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.

So here's the deal.

I think I have Lyme disease.

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.