Friday, February 22, 2008

"Let Your Day Begin"

I have a condition called "dysautonomia."

It's called that because it is dysfunction of the autonomic nervous system. If you're really curious about it, you can read more here:

To sum it up, the autonomic nervous system "automatically" controls things in your body that don't require thought or conscious control on your part. So my body is a little rebellious and things like blood pressure, heart rate, digestion, temperature regulation, and urination, can all sort of go haywire.

I'm one of the lucky ones because over several years with medication, rest, diet, and proper treatment, I'm slowly getting better. No one really knows for sure how my nervous system was damaged, whether it was mono when I was a teen, or toxic mold and chemical exposures my last year of high school and first year of college, or a virus. What is certain is that my onset of episodic symptoms was gradual, all through college, and then suddenly, my symptoms became disabling in graduate school.

I deal with the following symptoms:

Tachycardia (Grubb, 2000)
Lightheadedness (Grubb, 2000)
Dizziness (Grubb, 2000)
Palpitations (Grubb, 2000)
Exercise intolerance (Grubb, 2000)
Flushing (Grubb, 2000)
Fatigue (Grubb, 2000) (which can be disabling)
Polyuria (Jacob & Biaggioni, 1999) (excessive urination)
Cognitive impairment (Grubb et al., 1997) (may include difficulties with concentration, brain fog, memory and/or word recall)
Intolerance to heat (Grubb & Karas, 1999)
Sleep disorders (Low et al.) (can cause unrefreshing sleep and an increased need for sleep)
Cold hands (Low et al.) (and often feet & nose)
Hypovolemia (Low et al.) (low blood volume)
Noise sensitivity (Stewart, 2001)
Light Sensitivity (Stewart, 2001)
Arrhythmias (irregular heart beats)
Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses)
Easily over-stimulated
Feeling full quickly
Feeling "wired"
Food allergies/sensitivities (some foods seem to make symptoms worse)
Irregular menstrual cycles
Muscle aches and/or joint pains
Polydipsia (excessive thirst)
Pupil abnormalities
Loss of appetite
Swollen nodules/lymph nodes
Sore throat
Low blood pressure upon standing (Grubb, Kosinski, Boehm & Kip, 1997)

Chest discomfort and/or pain (Grubb, 2000)
Bloating after meals (Grubb et al., 1997)
Diarrhea (Jacob & Biaggioni, 1999) (sometimes with alternating constipation)
Feeling cold all over (Grubb & Karas, 1999)
Numbness or tingling sensations (Low et al.)
Generalized weakness (Low et al.)
Low back pain (Mathias, 2000)
Nausea (Robertson, 2000)
Disequilibrium (Sandroni, Opfer-Gehrking, McPhee & Low, 1999)
Weight loss or gain

During an "episode":
Clamminess (Grubb, 2000)
Fainting or near fainting (Grubb, 2000)
Anxiety (Grubb, 2000)
Tremulousness (Lowe et al. 1995)
Tunnel vision (Low et al.)
Chills (Low et al.)
Hyperventilation (Low et al.)
Excessive sweating (Robertson, 2000)
Feeling detached from surroundings
Blurred Vision (Grubb, 2000)

For me, episodes used to occur a lot more often than they do now, but as you can see, these symptoms can be quite disabling. The main issue being that my body doesn't adjust well to upright posture. To put it simply, I'm "gravity intolerant."

Sitting upright and standing are my biggest challenges, and when I'm pushing myself to be upright for too long, I pay with fatigue, muscle aches, and sore throat. If I go beyond that, I typically push myself into an "episode" of acute symptoms. Medications, stress, excessive stimulation, and hormonal shifts can all trigger episodes.

A few days ago, I posted that in graduate school I had a case of the flu than lingered on for months. I wasn't keeping up with my job or my schooling, and I was sleeping as much as I could, with no relief. I didn't know better, and so I didn't slow down. I passed out at church one Sunday, and I never bounced back after that. I tried to continue working, but the room was always spinning around me, and I couldn't focus. All I could think about was getting back into bed. This lasted for weeks, with a lot of sick days, before I was finally sent to a specialist.

The specialist put me through a tilt table test, which tested my body's response to gravity by strapping me to a bed and then slowly increasing the angle of the bed until it was holding me in a standing position. I was not allowed to flex my leg muscles to compensate for my inappropriate circulation. In under 10 minutes, my heart rate escalated to almost 150 beats per minute, and my diastolic blood pressure was continuously dropping. Just before I lost consciousness, they lowered the table, and the doctor informed me that I had POTS (postural orthostatic tachycardia syndrome).

POTS is a form of dysautonomia that refers specifically to the increased heart rate I experienced when I stood. In essence, it was like I was having a "fight or flight" reaction going on in my body whenever I was up. No wonder I was so tired! Quality of life for someone with POTS has been compared to those with congestive heart failure. However, at the time, I didn't understand my limitations and thought this sudden problem could just be fixed with some medication. After all, I had been able to limp along before this.

My condition simply deteriorated. I took a month off waiting to get better, and when I didn't, I went back to work anyway, trying to convince myself I was better by returning to my daily routine. Soon after, I was sitting at work with my feet up, and passed out in the middle of a meeting. Luckily, I worked in a hospital, and was at a meeting on the cardiac floor, so God couldn't have taken better care of me. But due to the timing of the meeting, it was obvious I could very easily have been on the road driving home when this incident occurred. My eyes were finally opened to the risk I was taking with my daily 50-minute commutes as well as the severity of my limitations.

Once I discontinued going in to work, the doctor started me in cardiac rehab to protect from deconditioning. I also tried new medications and dosages. This period of time was the worst of my illness. I was practically bed-bound, except for my rehab sessions, to which I had to be driven, and at times, wheeled out in a wheelchair. I could not sit up at the dinner table long enough to eat a meal, and had to bathe quickly in cool water so I wouldn't faint in the shower. I was frantic about finishing my master's degree and losing my place in my program. I only got sicker. I had major digestive problems during that time which required ultrasound, x-ray, radioactive tracers, and my favorite, the CT scan-- which sent me to the ER because of my surprise anaphylactic response to the contrast dye. My sleeping problems also heightened, and I lost a lot of weight, surviving primarily on bagels and noodles. All life consisted of was rehab, resting, and wonderful visits from my faithful boyfriend.

I somehow finished my thesis from home and conducted my final defense with a Boost nutritional drink in my hand, as I gave my talk from a wheelchair. That day of graduation from my program was like crawling over the finish line of a marathon. Tooth and nail, I fought for that degree, and when it was finally over, I was exhausted.

It was that particular day, when my family and I were at my defense, that the spark of our current issues went from a small spark into a full bonfire blaze. At least God introduced my trials one at a time... :)
Today was a good symptom day for me. I was doing my exercises while listening to the Tree63 "The Answer to the Question," and I heard this song that expressed my heart's cry. The scripture at the end was in the liner notes after the lyrics.

Let your Day Begin

Lord are you still coming?
This world is all in shame
Everything is broken
But you remain...

Have mercy on me, Jesus
I can't take one more step
The lights go out all around me

I want to see you face
I want to hear you voice
I want to lay my burden down
I want to run to you
Forever dance with you
I long for night to end
Lord let your day begin

The sons of men are hiding
Pretending to be free
They're yearning to escape you
For "liberty"...

But all I want, Lord Jesus
Only you can give
When the light goes out all around me

I want to see your face
I want to hear your voice
I want to lay my burden down
I want to run to you
Forever dance with you
I long for night to end
Lord let your day begin.

Psalm 74:22-23
"Rise up, O God, and defend your cause;
remember how fools mock you all day long.
Do not ignore the clamor of your adversaries,
the uproar of your enemies, which rises continually."

Hole in the wrapper

Today was my boyfriend's birthday. He is a big fan of Lord of the Rings (or LOTR for those computer programmers out there), and so I got him the extended version of the three movies. The gift was a hit, and after a dinner of pork, potatoes, and cinnamon strudel (streusel?) muffins, it was time to open the master pack.

Each movie has a set of 4 DVDs in a pristine folder with tremendous art work and menu maps. Each one is also individually shrink wrapped. As my boyfriend hunted for a small weakness in the plastic, or a tiny hole to exploit, it became obvious that the plastic had a great deal of integrity and would not give way.

I was struck in that moment by how Satan probes for such weaknesses and holes in our spiritual lives with a finger hungry to find a weak area to bore in and cause our shields to give way. All it takes is the smallest breach, and the whole protective package will fall apart.

My protective package fell apart in recent days when I allowed my feelings to dictate my actions with God. Pulling away from him in fellowship, reading, praying, meditating, for just a few days left me bare and open for more attacks from the enemy. I had no spiritual armor on, and the flaming arrows came flying in... arrows of "how could God care about you?" "he's going to let your pain go on forever" "no one will ever help you" "no one will ever understand." Missile after missile of despair, faithlessness, anger, and pride. The ultimate message from me to God being, "I know better than you. Stop putting me through this. Stop bothering me."

I couldn't have been more broken last night, having withstood such an onslaught from the enemy. My heart was broken, and I poured it out to God with brutal honesty, tears, and a plea for forgiveness. The relief that followed was fresh water soothing my burning soul. I was so hungry for truth, so thirsty for the very voice of God that I had been trying to tune out. And, oh the sound when he spoke! Sweet, familiar, powerful, and with Laser-like accuracy, targeting my biggest insecurities and my worst fears.

I've been trying to decide how to tell the story of the way my circumstances became what they are now, and to be honest, this is the exact uneasy feeling I get when I want to confide in a friend but am not sure how they will respond or what questions they will ask. My current state is the result of such a long story, full of facts that build on other facts, full of tragedy and being forsaken, full of pain, and that pain being invalidated time and again, that I've grown to adore the privacy of pretending to be normal. However, the more time I spend talking with someone, it becomes impossible to conceal that my life is in pieces, my family is in pieces, and we have enemies who have surrounded us in this state, hungry for blood. I think this story will come in installments, the way it's grown up brick by brick, like a living wall around me. So for now, to put God's voice into perspective, know that my family is in danger, and I feel inadequate to protect us. I feel at times as if God has left me alone here in the battle with no support.

My Lord's timely answer was through this story of the prophet Elisha and his servant...
2 Kings 6:15-17

When the servant of the man of God got up and went out early the next morning, an army with horses and chariots had surrounded the city. "Oh, my lord, what shall we do?" the servant asked.
"Don't be afraid," the prophet answered. "Those who are with us are more than those who are with them."
And Elisha prayed, "O LORD, open his eyes so he may see." Then the LORD opened the servant's eyes, and he looked and saw the hills full of horses and chariots of fire all around Elisha.

For the full story, read here:;&version=31;

Oh, that the LORD would open my eyes so I could see! When my Michael W. Smith CD was playing today, his song "Open the Eyes of my Heart" made me think of this passage again. I actually looked out the window half expecting to see some flaming chariots. God gave me such great strength through this verse. I see things happening all around me every day that don't make sense. Evil wins. Justice seems like a fairy tale. The strong punish and control the weak. Thieves steal and destroy. Lies spread like gangrene ruining reputations and lives. People with the ability and responsibility to step in and help, turn away. And the more I see the weak hurt, and feel my inherent powerlessness, the less faith I have in ever seeing things resolved. The fact is, I forgot that it's not myself or my abilities in which I need to have faith. I can't wait on my own inner strength with hope and expectancy. I must wait on the Lord. And his resources and soldiers and chariots are more than the enemy. He is more than enough.

Ephesians 3:20-21
Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Monday, February 18, 2008


Ironically, I'm not good at waiting.

Don't get me wrong, I'm better than I was. But I'm nowhere near the patient saints who suffer daily with strong faith and don't ever doubt or get angry at God. In fact, I shut down toward God sometimes.

Like today. Today I couldn't even breathe a prayer. I couldn't even read the words of comfort in scripture because the comfort feels hollow and unreal to me right now, like something that's made up to make me go on. All I feel is raw pain. Everything feels and looks as if God doesn’t care about my heart’s cry, what's happening to my family, what’s happening to my life. It appears as if he is allowing us to be devoured. I cry out with the psalmist who wrote 74-- as if these were my own words--

"We are given no miraculous signs; no prophets are left, and none of us knows how long this will be. How long will the enemy mock you, O God? Will the foe revile your name forever? Why do you hold back your hand, your right hand? Take it from the folds of your garment and destroy them!"

"Do not hand over the life of your dove to wild beasts; do not forget the lives of your afflicted people forever."

How many times have I tossed these words up to heaven only to feel as if they are pebbles that come falling back down on my head? My feelings. My feelings are the problem here. What I see and hear and perceive is what blocks me from fellowship with God. I feel like my glass of emotion is full of liquid pain overflowing, leaving no room for any other sensation. I'm either trying to numb myself, and failing, or I must succumb to being a paralyzed patient under the knife. No control. None of my cries are heard. The cutting just continues.

So that is today's landscape on my journey of waiting-- the waiting that grinds like an old woman needing a hip replacement-- bone on bone, with each step eroding the very support that keeps you upright. Sometimes I wonder if I'm really becoming more like God in this fiery furnace, or if in fact, I'm slowly being destroyed, watching helplessly as the ship of my life goes down. All I can claim at this moment is that Jesus is Christ, and I have decided to trust him. I can make a claim of decision of the will and testify to his faithfulness of the past. It is a naked, vulnerable faith, stripped of feelings, answers, or extras, but somehow it is still there... A weather beaten tree still standing, in the flood waters and hurricane winds, rooted deep.

When I was a kid, I absolutely hated waiting, as I'm sure most kids do. I took it to a new level though. I wasn't just counting down days till Christmas. I was so impatient that I ate warm bread because I couldn't wait for the toaster's cycle to finish. Whenever it was possible, I would cut corners, ride my bike over the curb, and take the shortcut, just to arrive at my destination as soon as possible. But what always happened when I reached that destination? I started looking for the next one. Reaching those goals never completely fulfilled me. In fact, if I'm honest, I was pretty disappointed by some holidays, some relationships, some cold foods I couldn't wait to heat. The desire for quick satisfaction held me as a prisoner, and all I could see was getting the next achievement, the next place of fulfillment. Fulfillment never quite came.

When I graduated from college, I didn't know what to do with myself. For so long I had always been told what the next goal should be and what I needed to do to reach it. The waiting of completing my education had seemed overwhelming, and I felt it was something I'd been working toward "forever." When I suddenly found myself with choices, options, and no set direction for the first time, I panicked. Whatever I chose to do next would determine my happiness, my life's new path. But I didn't have a clue what made me happy. I'd always done what was expected of me. I didn't know what my life should be about. Sure, I loved God, but that wasn't a career, it was faith. I had tough choices to make, and I asked God about them, but no clear answer seemed to come. As time ticked away and deadlines approached, I had to decide what I wanted to work for and do it.

I was already on my way to finishing a master's degree after summer research and extra credits under my belt, so I figured I would think about my career plans as I completed experiments and started my thesis. But working there just made things harder and more confusing. I wanted to please my boss by continuing with more graduate work. I was told over and over how much promise I had. I had a set path before me that could give me security and delay me having to make any real choices for myself. I had guaranteed funding, though not as much as a salary. I had the knowns, the secure, the familiar. I had been doing ok so far, but that's all I'd ever known.

What if I'd be happier doing something else? In another lab? Another school? What if I'd be happy starting a job like some of my friends? Gaining independence, getting a nice apartment? What if...just what if...I should go to medical school like I wanted to when I started college? Nothing seemed clear. The harder I thought about it, it seemed like the harder things got for me. I felt like I was walking in mud. My thoughts weren't clear. I was tired. I was very very tired.

When I got the flu that winter, the first thing I should have done was take it easy. I'd already had health challenges in the past (which is a whole other story for another day). But I didn't take it easy. I didn't listen to my body. I didn't listen to God.

Slow down, Kristen. Tune into me. I want your love. I want you to be in love with me.

These things were constantly going through my heart at this time, but I felt this pressure to be more, to do more. I was gradually descending. And as my aspirations for career swirled and grew in my head, I became even less able to do what little I was doing. I didn't want to wait to get better. I wanted a quick fix.

My grandpa was terminally ill then. He had been sick for 5 years at that time and had heart disease, kidney problems, and dementia. My mom and grandma were at the breaking point taking care of him. He was very difficult and required round the clock attention. I tried to help out when I could, but this just added to the considerable strain on my body. I wondered why I couldn't keep up.

One day I took some laundry over to my grandparents' before work because my mom was sick. I was already hours late for my job, once again taking advantage of the flexible hours we could keep. However, when I finally arrived, the air was thick and unusually quiet with a buzzing that made me uneasy. I got the polite hellos. I had been the topic of conversation. An email landed in my box later, and a conversation took place that made me shake from stress. My chronic late arrivals had been pointed out to the boss. I was told I needed to get my act together.

I panicked, not knowing what to do, not knowing how everyone else could keep up when I suddenly could not. I tried to remedy the situation by getting even less sleep, taking more cold medication, and trying to get an antibiotic-- anything that would get me back on top again. Nothing worked. I was a congested zombie there at 9 on the nose, with nothing to show for my days but a trash can full of dirty Kleenexes, some emails, and the darkest emptiness and confusion in my heart-- a feeling that no matter how hard I tried, it was never enough.

I had a class that semester which would run into early evenings, and in order to gather enough strength to drive myself home, I had to sleep for a few hours in my new boyfriend's dorm room. I was like a lead marionette walking through a Jello world. Every move of my arms, every thought was thick and heavy. I didn't know why I couldn't shake this illness. For months it just hung on. The dizziness, the fatigue, the headaches, the muscle pain all lingered along with the stuffy nose.

I was powerless to stop what was happening. I couldn't speed up my healing. I couldn't pop that toaster button and just eat the bread raw. This illness was out of my hands, and it was leading up to a lesson in waiting and reprioritizing that I couldn't avoid. Looking back, it's nothing compared to the current circumstances and the waiting I'm doing today, but at the time, it was everything holding me back from a "bright future."

I was nearing the edge of a cliff, and as much as I was aware I was struggling, I never saw that pit coming.


Qavah. Waiting.

What am I waiting for? Who am I waiting for?

We're all waiting for life to get better, right? For that next big thing to make us happy. We're waiting for that special someone. We're waiting for the money to buy that great new toy. We're waiting for a change in government, a change in the economy, a change in our family. We're waiting in line to buy our food, waiting to be healed, waiting for times to get better, waiting for happiness...

Is there anything we can do while we wait? Are we forced to sit here and twiddle our thumbs as our years go streaking past us, one sad, flaming birthday cake at a time? Or is there something active we can do? Can we participate in changing our lives for the better?

Qavah is waiting. But it's a very particular kind of waiting. Qavah is waiting with expectant hope. In today's world, that can sound idealistic, old fashioned, naive, even a little bit foolish. And it is. It's foolish if you are waiting with expectant hope for things that might never come. If you are waiting for people to change who are determined to stay the same, you will be disappointed. If your hope is placed in anything of this world, it may or may not come to pass. What is the sense in waiting on probabilities and statistical uncertainties? There is only One who is worthy of hope. One will never disappoint. Waiting on Him is not being still, but the very opposite-- being transformed. Being changed at the very core is the most productive waiting one can do. It's the waiting I'm doing right now.

But I don't want to be changed, thank you very much! I want THEM to change. I want my CIRCUMSTANCES to change. If only these changes could be made, I would be just fine. Give me my house, my health, my job, my hobbies, and maybe a dog. If I could just escape these health problems, these annoyances, these responsibilities, these people depending on me, this intense pain, I'd be fine.

Here is the bottom line. Change begins in me. It begins in my heart. And it begins the day I see that everything on earth is transitory and decaying. People disappoint. Evil appears to succeed. “Becoming Jane” ends with the guy never getting the girl. Eventually everything will fail, we will die, the earth will end, and we will be face to face with the God who made us.

What did you wait for? Who did you wait for? What were you becoming while you waited?