Sunday, December 25, 2011

Merry Christmas

A dear friend of mine sent me an article about being in pain over Christmas. It talked about God drawing near to us by being born on earth as Jesus. Because of his sacrifice, we can freely offer up our brokenness to him, rather than trying to cover it with false holiday cheer.

To those who are hurting on a day when everyone else seems so happy, may you feel the comfort of Emmanuel in your heart. He, who made the ear, hears your cries. He, who formed the eye, sees your pain. Invite him into your heart and into your loss. He promises to come again and make all things new.


May this song bring you comfort this Christmas day.

"Behold, a virgin shall be with child, and shall bring forth a son, and they shall call his name Emmanuel, which being interpreted is, God with us." Matthew 1:23

Wednesday, December 21, 2011

I've got to be honest...

The past 8 weeks have been difficult for me. Shortly after my flu shot in October, I had the tingling reaction in my face and limbs and then was diagnosed with an infection that caused mono-like symptoms. Despite 2 rounds of antibiotics, my symptoms persisted and eventually culminated in an endless sinus infection.

After the triumphant health progress from my treatment this summer and fall, with a strict gluten-free diet, avoiding sugar, and adding L-glutamine powder to heal my damaged gut, I felt like the rug had been pulled out from under me. Back to being sick. Back to being in bed. Losing the conditioning and strength I felt from walking. It all just seemed like one more loss. And for how long?

As I struggle through the third round of antibiotics, still with symptoms, I pray for God's healing and that this infection won't turn chronic, requiring months of antibiotics and complications. I feel despair. I feel a sense that God is not listening and that I cannot hope for more than what I have right now.

My feelings have overwhelmed me as my grandma continues to sink deeper into the confusion of dementia and becomes needier and more unreasonable. She hits and insults to the point where you'd think it was her greatest pleasure to strike emotionally in the rawest of sensitive areas. Yet her life lingers on, and her true personality was never like this, so we have to remember her as she was. We honor her first because we honor Christ and the life he gave to her, but also because when my mom and I were children, she honored us with exceptional love and care. It does not make my mom's months of sleepless nights and countless bathroom trips with her any easier, but it gives us perspective that her generous soul is trapped in a broken mind and failing body.

It is with a heavy heart that I also confess to our stalking situation not being resolved. I have written about this only briefly and sporadically before on my blog because it is a situation that confounds logic and sounds blatantly unbelievable, but we've continued to have evidence of home intrusion, missing items, harassment in public, and vandalism. My mom has been hurt, and I honestly feel like God is allowing this without anyone to help. My dad has left us in this situation without protection.

I wait on the Lord today in discouragement. There is still hope buried somewhere deep down in there. But when my mom is showing me new injuries on her body and my grandma is talking to a hallucination in the next room, I find myself asking, "O Lord, how much longer?" At a time when I feel my weakest, my burdens feel the heaviest. And I come to Him and say, "You must take these things from me because I am not equipped to handle them." And still I wait. Each day feels like the movie "Groundhog Day," as if the same horrible song replays from the moment I awake.

I have got to be honest that sometimes waiting on God does not involve bright new insights every week. Sometimes circumstances don't change for the better just because you pray and beg for relief. There is faith that lasts in spite of not smiling, not feeling encouraged, and being betrayed by those entrusted to protect. There is faith that lasts through secret pain so bad that no one knows the depth but Christ himself. There are circumstances so awful that they are difficult to believe, even for the very people living through them. The faith that survives these things is what I want. It eventually comes forth as gold, refined by raging fire. But I've got to be honest. Today I am feeling the flames.

"How long, O LORD? Will you hide yourself forever? How long will your wrath burn like fire? Remember how short my time is!" Psalm 89:46-47

Saturday, November 5, 2011

Stronger

It will be two weeks tomorrow since I had a flu shot. I don't typically get them, but this year my new doctor encouraged it because of my risk factor of asthma. I'd had an H1N1 shot (without the preservative thimerosal) 2 years ago with no major complications, and I thought about how I'm healthier now than I was then, so I should be able to tolerate it. I decided that I should go for it, even if I had a few days of feeling run-down. However, I completely forgot to ask for the thimerosal-free injection.

As I was falling asleep the night of the shot, I felt my face start to tingle on the left side (the side my shot had been given). Since then, I've had off and on tingling in my face, which later moved to my arm and hand. One week after the shot, I also developed swollen, painful lymph nodes in my neck, a low fever, and fatigue. The reaction has been scary, to say the least, since I don't know how long it will last or how bad it will get. Though very rare, the dreaded reaction of Guillain-Barre Syndrome is always in the back of my mind when my arm feels strange. Will I suddenly feel weak and lose the ability to move?  Or will this tingling just ease off over the next few weeks?  Though I believe I will be ok, there are no sure answers.

Coping with multiple challenges was already difficult before the shot, so I have been struggling with God over this added burden. I feel like I just can't take one more thing, but one more thing has come anyway. What do we do when our already swamped boat gets hit with a fresh wave?

The thing we should NOT do is read about horror stories involving extensive nerve damage on the Internet. Did that. Not helpful.

But what has fostered peace in my heart is my loving Father in Heaven. I know he is with me through this. I know my friends are praying for me and thinking about me. I know that I have a doctor who is listening and monitoring me. In the end, this experience will serve to increase my faith.

My mom sent me a song that I have heard on the radio a hundred times, but I never stopped to really listen to the lyrics until today. If you are feeling completely overwhelmed, take a second to read the words in this song by Mandisa. It filled me with hope that one day, because of Christ's work in me, I will be stronger.


"He exhorted them all to remain faithful to the Lord with steadfast purpose" Acts 11:23

Saturday, October 22, 2011

Building Bone

I tensed up when I was falling asleep. Footsteps fell down the hall, coming toward my door. My bedtime, already late, was now interrupted by light coming in from the hall. Just a few moments, but enough to wake me up even more. With a sleeping disorder and chronic illness, I felt thwarted in my attempts to get rest.

Living with a grandma who has dementia causes a lot of interruptions and chaos, which (after times of resisting) I've had to just accept. Feeling out of control is not new. 

As I shielded my eyes from the light streaming through the open door, my mind wandered to a "what if" scenario. What if I had no distractions from healing?  What if I could lie down to sleep at night with no real worries about my family or my well-being?  "It would be bliss," I concluded. I could go to bed at the same time every night. I could organize and keep my room the way I wanted it. Nothing would stress me out beyond reason because life would be in order. "Normal," as I commonly fantasize.

But just after this ideal bedtime scenario washed over me - these thoughts of no one opening my door or disturbing me when I just want to be left alone - I suddenly thought of a lesson I learned in college about bones.  Bones?

You see, I was always under the impression that when a break occurred in a bone, the way for it to heal was for the bone to be rested undisturbed for a long time (i.e. a cast). Take the weak bone and give it a rest already!  It has enough problems just trying to bridge the traumatic gap.

But one day in biomaterials class, I learned that for proper healing, broken bones fixed into the right position require added stress. What?!  Why would you put stress on something that is already broken and damaged?  Because, to quote a scientific article, "Bone is formed where stresses require its presence and resorbed where stresses do not require it."  Basically, stress trains your body to form protective material where it's need most.

As most of my posts do, this association made me reflect on how the added stresses in my life have caused me to form spiritual bone in places that were weak before. Without the stress of waiting for problems to resolve, I would not have developed any patience. Without repeated losses, I would not have developed better priorities and a profound sense of thanksgiving. Without obstacles to my health and career, I would not have learned perseverance, to work at a slow and steady pace for a long time. And without my heart broken, I would not have received a deeper love for Jesus.

When I think about healing in that way, I realize my spirit is like a broken bone. Properly aligned in God's Word after the initial injuries, I need weighty exercises to heal, even though it hurts. And whether I like it or not, this added stress is slowly calcifying new and lasting hope in me where my old earthly dreams have shattered.

Sunday, October 2, 2011

Blocked

God cares more about your character than your comfort.

I've been getting this message through almost every route imaginable lately. Through Bible study. Through sermons. Through prayer. Through books.  It's clear that God is working, but he's not working to make my life safe and manageable. He's working to transform me on the inside.

This leaves me out of control. Which is a problem. Because I like feeling "in control." In fact, I will sometimes try to organize just to achieve some semblance of order, as if it will calm the inner storm.

Lately I've rediscovered that I enjoy playing the Nintendo game Tetris. When I sit there with the (aptly named) controller in my hand, I feel a sense of well-being.  Since I have power over what happens on the screen, I can orient the blocks to make everything fit together and disappear.

As the levels increase, blocks fall faster. I have to adapt quickly so that the pieces don't hinder my progress. Ultimately, they fall so fast that I can't control them anymore. They pile up and the steel door comes down. Game over.

Like the early levels of Tetris, my difficulties in adolescence used to surface manageably, one at a time. Ultimately things would fall into place, and the problem would disappear.

However, in adulthood my challenges have fallen faster and stayed around longer. The rate of emerging difficulties has become greater than my ability to deal with them. Finally, the steel door comes down. My skills aren't sufficient anymore to play the game.

Paul talks about a similar experience in his own life in 2 Corinthians 1:8-9

"We do not want you to be uninformed, brothers, about the hardships we suffered in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired even of life.  Indeed, in our hearts we felt the sentence of death." 

When I read that, I find great comfort in Paul's direct admission that there are certain problems in life that are far beyond our ability to endure. God sometimes places us in levels of life-Tetris that we aren't prepared to handle. But why does he do it?  Why would God want us to experience such a sense of powerlessness?

The next verses explain exactly why:

"But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many."

1)  He does it so we will rely not on ourselves but on God. And God has the power to handle these things, proven by his ability to raise Jesus from the dead. We have this power at work in us.

2)  Additionally, it is an opportunity for friends to pray for us and share our burdens, building a sense of love and community. It gives them the blessing of joining in God's work by helping us.

3)  Lastly, these overwhelming sufferings are a chance for the world to see God's glory. When we are ultimately granted God's favor of answered prayer, many will give thanks.

If you are suffering beyond what you can bear, don't feel that you have failed or that you need to somehow find a way to get back in control. Though it may feel terrifying, it is a blessing to be made aware of reality - that none of us is truly in control - God is. When we call upon him in our helplessness, he hears us, others pray for us, and the world will see God work. Our job is not to fix it but to wait on him in faith.

The Lord is good to those who wait for him, to the soul who seeks him. 
Lamentations 3:25

Monday, September 12, 2011

Saturated


"Above all else, guard your heart, for it is the wellspring of life."  Proverbs 4:23

When I was a kid, my mom showed me that if you put Queen Anne's lace in colored water, the flowers would draw the water up the stems and eventually the flower itself would turn the color of the water. I was out for a walk on Labor Day, and when I saw some Queen Anne's lace in an empty lot, I picked some to try the experiment again.

As I saw the blue flower on the countertop last week, it made me think about how what I saturate my mind with determines my attitude - and ultimately my actions. People in pain are especially sensitive to their environment, what they see and hear and think about. We are like the flowers whose stems are cut off fresh at an angle, thirsty and drinking up the life-giving water we need so badly. If we drink from a dirty pond, filling our hearts with ugly thoughts, distressing "entertainment," or unhealthy relationships, we will wither. But if we soak up God's word in the Bible and his presence in regular prayer, we are promised to bear fruit that will last, and we will also be gradually transformed in the process to become flush with the hue of our Savior.

"Remain in me, and I will remain in you. No branch can bear fruit by itself; it must remain in the vine. Neither can you bear fruit unless you remain in me."
John 15:4

Saturday, August 20, 2011

Keeping In Step

When I was a kid, my grandma and I would sometimes go walking together. She would wrap her arm around my little shoulders, and I would barely reach up to grab around her waist. Then we'd stop and shuffle and awkwardly skip a minute to get in step with each other. Connected by arms and the rhythm of our feet, we'd then recite this rhyme along to the beat of our pace -

Right!
Right!
You'll never get home with your Right!

Left!
Left!
I Left my wife with 46 kids, the OLD gray mare, and the PEAnut stand!

This would repeat until I would inevitably be giggling with joy over the silly rhyme and trying to stay in step.

There is something about walking in synchrony with someone or with a song that makes my heart more joyful and helps me continue on my path. I was thinking about that the other day as I walked on the treadmill to one of my favorite songs, "The Cave," by Mumford and Sons. Because that song spurred me on in my exercise, I decided to search my collection for more songs at that tempo using a free program called BeaTunes. It helped me to make a playlist on my iPod for songs specifically with a tempo in that range. It's made my walking so much easier and more satisfying.

This made me wonder, is it just me? Is there any science behind this? According to researchers, not only does music combined with exercise clear our minds and make us better able to think, but it also results in the accomplishment of more work without proportional changes in heart rate.

Suffice it to say that when your foot strikes the pavement at the exact moment of that drum in your ear, you are experiencing a kind of synergy - an ease that God built into our bodies to work better and to do more. Like WD40 applied to a squeaky door hinge, we can glide when we are in step with music.

Interestingly, God uses this same kind of language in the Bible when describing how we are to live the Christian life. When we place our faith in Christ, the Holy Spirit comes to dwell in us and be our guide. He 'sets our pace' so to speak in how we should live. Paul wrote to the Galatians that we are to "keep in step with the Spirit."

God wants to use our lives to do good works that he planned in advance specifically for us to do. However, we will struggle with this if we are trying to do good works on our own - making the mistake of attempting to "earn" God's salvation, which is a free gift.

Like walking without a rhythm, left to our own devices we will tire prematurely and the impact of our lives will be extinguished once this earth passes away. It's only by keeping in step with the Holy Spirit that we are empowered to do eternal work for God's kingdom. Even when we are weak and sick - especially when weak and sick - we are called to serve God with joy. The secret is trusting in him to set the rhythm for our lives and not fighting against it.

There was a song that was very popular years ago by Sonic Flood called Resonate. The lyrics caught my attention one day as I listened:

"Let all living things
Praise You with one voice
We will resonate, resonate Your glory"

I was stopped in my tracks when I heard this because we were studying resonance in class. One definition of resonance? "The intensification and enriching of a musical tone by supplementary vibration." We intensify God's rhythm in this world when we match it with the way we live our lives. A little bit off here or there, and we miss the profound amplification of resonance.

Think of it this way - have you ever pushed someone on a swing? You intensify their motion by timing your pushes specifically to their natural rhythm. If you want to slow them down, you just oppose that rhythm. The same is true in our walk with God. By keeping in step with his commands to love him and love others, we will intensify God's movement here on earth and resonate his glory for eternity.


And this is love: that we walk in obedience to his commands. As you have heard from the beginning, his command is that you walk in love.

2 John 1:6

Sunday, July 17, 2011

Meditating with Deepak

While watching my nightly dose of Dr. Oz recently, I heard Deepak Chopra give this advice on how to meditate:

"Close your eyes.
Watch your breath for about 5 minutes.
Put your attention on your heart, and ask yourself:
Who am I?
What do I want?
What's my purpose?
You don't need to know the answers. Live the questions, and life will move you into the answers."

When he said that, I wondered if he was kidding. Would it really lower someone's stress level to realize they don't know who they are or what their purpose is in life?

Yet these are life questions, ones that can't be easily ignored. Is it really true that "life will move you into the answers?"

From my experience, life can move you into some pretty destructive answers. How would this philosophy have guided me had I followed it after graduating college?

Left to my own devices, I might have defined myself at the time as an aspiring medical researcher trained in engineering.

Had life been guiding my desires, I might have wanted more notoriety and attention.

Perhaps my purpose in life would have been to pursue a medical breakthrough for cardiac patients and to start a family of my own. Maybe my purpose would have been to make a name for myself.

The only problem with letting life guide my purpose, desires, and identity?
A disabling illness made these answers completely irrelevant.

Had I defined myself by my job, due to illness, I would have been left with no identity.

Had my desires been pinned solely on my own achievement and affirmation, I would have been crushed once it was all taken away.

Had my purpose in life been to accomplish great things and raise a family, I would have been left alone with no real aim.

If I changed the answers to these important questions because of my illness, I'd still be navigating with no compass - building with no foundation. My identity and my purpose must be based on something more concrete than my circumstances, or I am no better than a raft tossed by the sea.

The Bible gives answers to these questions that are unchanging and true. In John 13, Jesus clearly shows his identity, his purpose, and his desire so that we all will have an example to follow and a foundation on which to build our lives.

John says:
"Jesus knew that the time had come for him to leave this world and go to the Father. Having loved his own who were in the world, he now showed them the full extent of his love." [His purpose - Dying on the cross to save a lost world and showing the full extent of his love to those who trust Him in faith.]

"Jesus knew that the Father had put all things under his power, and that he had come from God and was returning to God;" [His identity - Son of God]

"so he got up from the meal, took off his outer clothing, and wrapped a towel around his waist. After that, he poured water into a basin and began to wash his disciples’ feet, drying them with the towel that was wrapped around him." [His desire - That after becoming his disciples, we should follow his example to serve others in humility rather than seeking to be served.]


If I live Christ's way, nothing can shake my identity. No circumstance can thwart my purpose. And my desire will never lead me into defeat or destruction. By meditating on the life answers provided by Christ, I can build upon a firm foundation and follow the way to everlasting life.

My identity: Follower of Jesus Christ.
My desire: To please God.
My purpose: To express my love for the One who died to save me by serving others and pointing to the hope of eternal life in Christ.

Are you uncertain about your identity? Do you know what your purpose is? Have your desires gone unfulfilled?

I can personally testify that this world will never guide you into truthful answers. Life on earth is terribly broken. Since the beginning there has been pain and heartache and evil and sin. Nothing in this life is certain or lasting - not money, health, riches, family, or even the length of life itself. But God broke through on a rescue mission to save us. He offered his only Son to us as a sacrifice so that through faith in him, we could have eternal life.

Faith in Jesus offers solid answers to life's big questions that Deepak and this world can't provide. Now that is truth worthy of meditation.

Friday, July 1, 2011

Soul Tan

Due to vitamin D deficiency and to help my circadian rhythm, I've been making an effort to recline in the sun for 15-20 minutes on a regular basis. My regular sun exposure has brought about something foreign and unfamiliar to me - a tan.

Because of my fair skin and impatience, I'm not really into tanning. The only time I've been remotely tan has been on childhood vacations, and even then it was more of a quick burn. However, the tan I have now reflects a build-up of multiple short sun exposures since April. It is an outward reflection of daily discipline.

It occurred to me as I was baking in my outdoor recliner today that my regular sun time had gradually changed my outward appearance just like my daily devotions gradually change my inner-self.

Making an effort to read the Bible consistently has been a struggle for me most of my life. I would get very enthusiastic and motivated, read a lot over a period of days or weeks, and then eventually slip back into sporadic reading, feeling like it wasn't making a noticeable difference.

If there's one thing I've learned from sun exposure this summer, it's that it is not the one 20-minute period that makes a noticeable difference; it is the entire collection of those repeated times that changes me. When I am in a habit of reading God's Word and praying regularly, one devotion may not create a profound impact on my thinking for that particular day, but the habit is what keeps me walking in step with God, repenting quickly when I stumble, and receiving his forgiveness and strength to keep going.

Dr. Charles Stanley once compared our life in this world to a boat on a river with a strong current. If the boat's rope is not tightened securely each morning to the dock, it will eventually drift away down the river and over the waterfall. This world is just like that current - an ever-present force working on our minds and hearts to lull us into going along without God and relying on ourselves to make it through life, ultimately to our ruin. The truth is, if our souls are not anchored to Christ, we will passively slip downstream, away from God.

I'm learning now more than ever how powerful daily habits can be. Negative daily habits can destroy us, while positive habits like prayer and Bible study will gradually change our lives for the better. Never give into the feeling that daily prayers and Bible reading don't make a difference. No matter the trials, distractions, failures, and suffering that may tend to deter you from your discipline, daily "Son exposure" gradually transforms your soul and keeps you firmly anchored to God, our Rock and our Redeemer.

And we all, with unveiled face, beholding the glory of the Lord, are being transformed into the same image from one degree of glory to another. For this comes from the Lord who is the Spirit.
2 Corinthians 3:18 (ESV)

Friday, June 10, 2011

Subsisting on Substitutes

What object, person, or dream have you longed for as your key to happiness in life? What substitute have you looked to for joy instead of Jesus?

We chase after these elusive shadows as if they were solid and lasting. However, they are only meant to stir our hunger, to redirect our gaze - pointing us toward the Author and true fulfillment of our souls.


"The book or the music in which we thought the beauty was located will betray us if we trust to them; it was not in them, it only came through them, and what came through them was longing...they are not the thing itself; they are only the scent of a flower we have not yet found, the echo of a tune we have not heard, news from a country we have never yet visited."
-C.S. Lewis, The Weight of Glory

Sunday, May 29, 2011

Out of Control (in The Hands of The One in Control)

"No one can tell me what I can and can't eat!"

Thus says my grandma with dementia.

It's amazing to me how dementia (much like Alzheimer's) removes all inhibitions and reveals the ugly threads that weave through human nature.

I am no exception to this nature.

When I was a kid, I was considered "strong-willed." My mom read a book about it. This trait was most readily observed by my famous toddler expression of "ME do it" anytime I was confronted with a task on which I received even the faintest suggestion of help. (Eventually I graduated to: "Let me do it on my own.")

I was also an expert at testing my boundaries. When I was a small child, I was informed that our family was going to leave my grandparents' house one evening. Not wanting to go, I refused to budge. I was then given the option of walking out on my own or being carried against my will, to which I stubbornly responded with my own defiant choice: "I'll crawl out."

Yes, God has had his hands full breaking my will to be in control. I have repeatedly been convicted of my desire to drive the boat, so to speak.

It's not hard to see why trusting God is difficult for me. My objective is to avoid discomfort, discipline, and pain. However, God frequently accomplishes his important purposes through these things. How do I respond?

My grandma's response is to lash out in the same way I used to as a child. In her state of being completely dependent on my mom and me for everything because of her failing health and mind, she tries to regain some form of control. In doing so, she defiantly asserts her will in areas that make everyone's life more difficult.

I learn a lot about my childish ways with God when I see my grandma act like that. By refusing to eat simply because she doesn't like being taken to the toilet (or being washed, or given food), she hurts herself the most.

Similarly, when I refuse to pray to God simply because I don't like the circumstances he's put me in, I, also, am hurting myself the most. I need prayer as a protection, as an outlet, as a guide, and for peace during times when life is beyond my influence. It's easy to see lack of prayer as making a point, but God does not respond to my defiant silences. He simply waits for me to come back because I'm hungry for him and nothing on this earth will fully satisfy that hunger.

Even when trials and illness make you feel completely powerless, remember that God is not the enemy. He is the one who will lead us to repentance and peace that passes all understanding, if we would just be still and trust in him.

For the Lamb at the center of the throne
will be their shepherd;
‘he will lead them to springs of living water.’
‘And God will wipe away every tear from their eyes.'”
Revelation 7:17

Thursday, May 19, 2011

Blessings

This song reminded me today that my suffering has a purpose far beyond what I can see. I've never longed for Jesus like I do in times of suffering.



Blessings by Laura Story

We pray for blessings; we pray for peace,
Comfort for family, protection while we sleep.
We pray for healing, for prosperity.
We pray for your mighty hand to ease our suffering.

All the while, you hear each spoken need.
Yet love is way too much to give us lesser things.

Cause what if your blessings come through raindrops?
What if your healing comes through tears?
What if a thousand sleepless nights are what it takes to know you're near?

What if trials of this life, are your mercies in disguise?

We pray for wisdom, your voice to hear.
We cry in anger when we cannot feel you near.
We doubt your goodness; we doubt your love,
As if every promise from your word is not enough.

All the while, you hear each desperate plea.
And long that we'd have faith to believe.

Cause what if your blessings come through raindrops?
What if your healing comes through tears?
What if a thousand sleepless nights are what it takes to know you're near?

What if trials of this life are your mercies in disguise?

When friends betray us, when darkness seems to win,
We know the pain reminds this heart that this is not, this is not our home.
It's not our home.


Cause what if your blessings come through raindrops?
What if your healing comes through tears?
What if a thousand sleepless nights are what it takes to know you're near?

What if my greatest disappointments, or the aching of this life,
Is the revealing of a greater thirst this world can't satisfy?


And what if trials of this life, the rain, the storms, the hardest nights,
Are your mercies in disguise?

Thursday, May 12, 2011

Living Better with Dysautonomia (Help #7: The E-word)

Help #7: Exercise

I have been a neglectful blogger lately.
This is in part due to the mild apprehension I felt about writing this exercise post. To start with, POTS/dysautonomia patients are by their very nature exercise intolerant. Exercise intolerance is a crippling symptom of dysautonomia that can make staying in shape about as hard as if you had heart failure. If you suffer from POTS, strenuous exercise will in all likelihood make you feel worse, much, much worse.

That's an encouraging start to this "help" isn't it?

I have a great deal of emotion invested in this topic because I am one of many patients diagnosed with disabling POTS in spite of struggling to exercise regularly. Before my symptoms disabled me, I worked in a lab, went to school, and belonged to a gym. I pushed 3 miles on the treadmill multiple times per week, used all the weight machines (recording my progress on an official-looking chart), and routinely avoided a slimy middle-aged guy who made unwelcome comments and wore unnecessary spandex shorts. I had a gym lock and a duffle bag. In terms of fitness, I was doing everything "right."

But in spite of that, so much went wrong.

About 8 months before I became disabled, I was walking around the track and suddenly felt sick. I decided to go home and barely got in the door before my nausea, dizziness, and cramping got the best of me. A hot shower only made things worse, and I slowly faded out of consciousness while lying in bed. In the ambulance on the way to the ER, my heart rhythm was rapid with excessive PVCs. After receiving a substantial dose of IV saline, I revived, and I was told to take it easy.

This episode is evidence that even those mildly affected by POTS symptoms can have serious episodes triggered by exercise if the proper precautions are not taken. In my case, I was clearly dehydrated. I had not eaten enough before going to the gym. The timing of my menstrual cycle was against me, and I had not gotten enough sleep the night before. For a healthy person, this would not be a big deal, but with underlying POTS, these factors put me in a very vulnerable position. It's because of these important factors that I placed "exercise" as number seven in my list of helps. If diet, sleep, hydration, and other precautions such as pacing are not taken into consideration first, exercise can end in disaster for a POTS patient.

The following exercise tips I have learned by trial and error over the last 6 years. I offer them here as a source of encouragement and in hopes that you won't have to make the same mistakes I did.

Tip 1: Some types of exercises are better for dysautonomia than others.
Simple walking is my preferred type of exercise. However, I have friends who enjoy swimming because of the compressive effect of water on the body's circulation. Recumbent bike riding can be beneficial because of the ability to recline. (Upright biking exacerbated my symptoms.) Additionally, Pilates-type workouts that are done mainly while lying down can allow for greater blood flow to the head. One good DVD for supine Pilates is by Denise Austin.

Tip 2: Some types of exercise are better for YOU than others.
If you don't like bike riding, or if it makes you feel awful, then you will subconsciously avoid it. If you have obstacles to getting to the pool, then you won't go often. If you live in a rainy or cold climate, then walking outside won't be made into a habit. It's best to pick an exercise that you can do immediately if you feel up to it. I am lucky enough to have a treadmill, but there was a time when I didn't have one. I had to get creative, so I walked in a loop around a small apartment. Though simplistic, I was able to do this much more regularly than any exercise which would require me to leave home.

Tip 3: Plan a regimen that is realistic for your current abilities.
When I started a cardiac rehab program shortly after my diagnosis, I was on a beta blocker which lowered my already low blood pressure even further. I was then put on a treadmill and told to move it for 40 minutes. Now, to put things in perspective, I was so dizzy at the time that I could barely hobble from my bed into the bathroom. I had to ride in a wheelchair to get from the parking lot to my cardiologist's waiting room, where I would nearly faint sitting. Trying to do 40 minutes of walking at that time was absurd. I was monitored, so it was safely absurd, but it was a completely unreasonable expectation nonetheless. My blood pressure was regularly in the 80s over 50s, and I had to give a periodic "dizziness rating" to the tech so that she'd know how close I was to passing out. I often left rehab in a wheelchair after lying flat in recovery and felt utterly terrible for days afterward. If you can push yourself to walk 40 minutes, but it destroys you for the rest of the day (or week!), that is not beneficial. It is best to start out with what you can handle, however small that may be - even 5 to 10 minutes once or twice a week!

Tip 4: Stay below your physical limits to achieve consistency.
(This is for all your overachievers out there.)
I am the kind of person who likes to take on a challenge just because it's hard. I like to overcome obstacles, push my limits, and do the most I can possibly do at one time. I'm often tempted to "beat my best ___" time, distance, or speed. This is not helpful when it comes to conditioning with POTS. If I push my physical limit by walking at 2.8 miles per hour but can manage much better at 2.5 miles per hour, it's far superior for me to walk at the slower pace and not exhaust myself. If I start to feel sick after walking for 5 minutes, it's far better to walk for those 5 minutes than to push myself to 10 and then not walk for the next 2 weeks. A good indicator while exercising is to closely monitor your symptoms and your heart rate. Investing in a reliable heart rate monitor can help guide your level of exertion. A blood pressure cuff may help as well.

Tip 5: Skip at least a day between workouts.
The exertion of a workout (or other stressful event) may cause worsened symptoms for the rest of the day and/or a flare over the next few days (also referred to as "post-exertional malaise" or "crashing"). Post exertional-malaise is a proven symptom in patients with chronic fatigue. Our bodies do not return to baseline after a workout like a healthy person. Instead of bouncing back from walking, I can struggle for over 24 hours with increased muscle aches, dizziness, extreme fatigue, and at my worst, a swollen, sore throat (which I had just this week from overexertion). Be aware of your body's limits, and try to pace yourself accordingly by taking days of rest. It's best to give yourself a break between workouts even if you are healthy. It gives your body a chance to heal.

Tip 6: Avoiding exercise altogether is a bad idea.
There have been times when leg lifts in bed were about the extent of my ability to exercise. If you are that sick, I empathize completely and encourage you to check out Yaz exercises or yoga and deep breathing that can be done in bed (my friend has Bed Top Yoga). If you can get up and move around, it will benefit you to do so. Walking around for a sustained interval helps avoid deconditioning, aids circulation, strengthens muscles, and helps mood (which can suffer tremendously under the effects of chronic illness). Quitting all forms of exercise because of POTS is tempting, but in the end, it will not help; it will only make things worse.

Tip 7: Exercise will benefit you but is unlikely to cure you.
Exercise for dysautonomia is highly beneficial when undertaken with the proper precautions. After 6 years of strict pacing and healing, when I am well hydrated, eating nutritiously, and well rested, I find that I can now walk a significant distance (over 1 mile) without feeling dizzy. Even though I have increased my endurance over the years, I still am far from being "cured."

Does mild-to-moderate exercise help manage my condition? Definitely. However, I still suffer from many fluctuating symptoms, including post-exertional malaise. I am still not able to reliably work a job schedule or keep up with a normal life. I still have bad days and weeks stuck in bed. There are times when I curl up in a ball and literally can't move due to fatigue. There are many times I push too hard and suffer for exceeding my body's limitations (just like spending over your bank account's balance will result in hefty fees).

Exercise has been a key part of my recovery, but it is not the only answer. Be realistic in your expectations and be persistent in pursuing physical activity as tolerated. If you miss a week or a month, come back and start again slowly when you can. In that way, you will continue to teach your body how to live better with dysautonomia.

Tuesday, April 19, 2011

The Case of the Missing Conductor

I was able to attend a college orchestra concert tonight. After all the performers were in place and the stage was set, the audience became quiet as we waited for the music to begin.

There was only one problem. The conductor didn't come out.

At first, I thought the few seconds of delay might be for dramatic effect, but time ticked by. Someone coughed loudly. People were looking around, shuffling in seats. Someone coughed again. Soft murmurs and low speculative chatter. The percussionists appeared to go backstage to look. I thought, "This isn't planned. Something isn't right." My friend and I exchanged glances.

Everyone waited for what seemed like 5 minutes but was probably closer to 2. Finally, the conductor emerged and quickly took her post in front of the group with her hands poised to conduct the first note. Not a word was spoken about the strange delay.

I wondered where she had been. Why had she, a respected professional, offered no explanation? What could have caused her to delay her group from beginning on time? What more than an emergency could have held her back?

Later, after the concert was over, it was revealed that she had been ready all along. The delay was because one of the orchestra members did not have a mute and could not perform any of the pieces without it. Until the mute was retrieved, the concert couldn't start.

To everyone in the audience, the conductor appeared to be at fault. However, she had mercifully covered for an unprepared member of the group.

On the way home, I started thinking about how I perceive delays in my own circumstances. My go-to person to confront and blame is God. He's the leader after all, and if he was ready to come out and make things right in this world (and in my life), then there should be no hold up. What, after all, could keep him from acting immediately when the stage appears to be set for his intervention and deliverance?

When I think this way, I fail to consider that God considers us all players in this world with him, and though he leads us, he will not force us all to be prepared for his coming. He mercifully waits, hoping that more people will come to faith in Jesus, that those of us who believe will forsake our earthly idols and begin to love him with all our hearts.

When he comes back, will you be prepared? Will you be longing for his appearing? Or are you sitting back, resting and backsliding because you think he's running late (or might never come at all)?

Be assured, the Messiah will return to earth suddenly and without warning. We are promised in scripture that we will be rewarded if we live spiritually prepared and ready for that day. In the meantime, it does me good to remember that sometimes God's delays are merciful, allowing just enough time for all the players in my life to become prepared - especially me.

I think about the valuable lessons God continues to teach me through my season of waiting, and although I want the circumstances removed right away, he uses them as tools to prepare me, to reshape me, to purify me. Tonight's experience at the concert was a reminder that He will indeed come to redeem my trials for his glory - in his merciful time.

But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day. The Lord is not slow in keeping his promise, as some understand slowness. He is patient with you, not wanting anyone to perish, but everyone to come to repentance.
2 Peter 3:8-9

Thursday, April 7, 2011

Living Better with Dysautonomia (Help #6: Sleep)

Help #6: Regular Sleep

I am writing this post at 2:20 AM.

Why, you may ask, am I qualified to give advice on improving sleep?

For the past 5-1/2 years I was unable to fall asleep at the same time for more than a couple days in a row. Always shifting forward, some weeks I couldn't fall asleep till 6AM, and the next week 10AM, and the week after 2PM, and so forth. However, as of early this year, I can now maintain a regular bedtime indefinitely. What changed?

Achieving quality sleep at the right time has always been a battle for me. I have mild sleep apnea and a circadian rhythm disorder: Non-24 Hour Sleep-Wake Syndrome (think severe, advancing, chronic jet-lag). Improving my dysautonomia symptoms was difficult when I couldn't even get a regular night of sleep. Despite countless attempts to improve the situation, I've slept away many days and weeks in total frustration, missing important events, only to feel sicker, defeated, and out of options. But this year, I've finally discovered a safe and medication-free way to help me sleep on a regular schedule.

Call now for this special offer and get the bonus gift free! Just kidding.

No, this isn't an infomercial, and what I'm going to share isn't a miracle cure, but it has improved my quality of life and stopped my sleep from cycling around the clock every month. Best of all - no pills!

The treatment is a pair of blue-block glasses. Before you think of the 80s commercial about amber shades making the golf course look 'crystal clear,' let me share a little background:

Melatonin is a substance produced naturally by the body to make you sleepy when it's dark. It is inhibited by light, particularly *blue* light, which is why people normally feel awake and alert during the day. Melatonin production can get disrupted in people with dysautonomia, fibromyalgia, CFS/ME, night-shift workers, nursing mothers, and people with sleep disorders. For some reason, the eyes don't respond to darkness cues properly or are exposed to excessive bright light at night, leaving us feeling revved up when the rest of the world is gearing down and exhausted when we should be refreshed.

What blue-block glasses do is protect the eyes from perceiving blue light. Worn only for a couple hours before bed, these glasses allow the body to produce more melatonin naturally, even in well-lit areas. I can wear them while watching TV, reading, using the computer, and all the while, my body is essentially fooled into thinking I am in total darkness. Not to be confused with regular sunglasses (which I tried and don't work!), these lenses are specifically designed filters that block out virtually all blue light involved in disrupting melatonin.

The effect has been remarkable for me. When it's time to fall asleep, I can drift off naturally and wake up at approximately the same time. No more drastically shifting bedtimes or widely varying wake times.

Additionally, I discovered the benefit of using blue-block light bulbs in the bedroom. These bulbs (which produce a pleasant yellow glow) can be used in place of the blue-block glasses in an otherwise dark room. Candlelight has been said to work too. The site I linked to also offers computer and TV blue-light filters as well as night-lights. The home page (lowbluelights.com) offers help on why and how to use these products most effectively.

From my experience, blue-block glasses at night are a great way to naturally wind down before bedtime without drugs or supplements. They help me to feel relaxed. Though not the cure for all sleep problems, they are well worth the effort if nothing else has worked for you or if you are seeking a drug-free way to improve your bedtime.

A few last words:
1. Be sure to read over basic "sleep hygiene" practices to use with the glasses for a better night's rest.
2. The Uvex brand (first link) is made with adjustable earpieces, which are not immediately obvious unless you know to push them in.
3. The LowBlueLights brand offer small sizes which are better for children and petite adults.
4. The glasses are not what I would call stylish, but if you are desperate for an earlier, regular bedtime without depending on pills, these might be worth a try.
They have certainly made a difference for me.

Tuesday, March 29, 2011

Exhausted

When's the last time you said, "I'm exhausted!"?

Did you say it at the end of a long, satisfying day of work?

Or was it barely a whisper off your lips while you were lying helplessly in bed for hours?

Exhaustion, to me, used to mean that I'd crammed too many classes, experiments, meetings, and social events into a day.

Now, it is a mind/body/emotional bankruptcy from sickness and prolonged trial. A feeling of utter weariness. It's as if I'm one of those vacuum sealed bags on an infomercial; someone inserts the attachment and sucks out every last ounce of air until I shrivel up.

Last week, I watched a Bible study video on exhaustion. As I dragged myself into the room and opened my notebook, I looked forward to finding help with this familiar problem. I was disappointed to hear tips about taking a quiet retreat, accepting assistance, and dispensing with unnecessary commitments. Sadly, none of these tips help someone who can't escape their burdens, is minimally committed, and whose proper sources of assistance have either turned away or dried up.

The final point of the video? A long story about how God had made supernatural provision for an old man to have his tangled hair brushed before meeting his wife again.

I was supposed to feel encouraged, but I left feeling even emptier than when I came in. If God cares for the hair of an old man, why is my family spending years in circumstances that are draining the life out of us? Where is God when I feel exhausted and in pain?

I have been struggling to keep faith in the midst of one trial on top of another, on top of another. I look to heaven for help, and often I just get enough to survive another day of difficulty. Another day, another struggle.

I keep thinking, what is it God wants to show me about exhaustion?

I think the most important thing to know about exhaustion is that it is a breeding ground for temptation. Temptation to doubt God. Temptation to give up. Temptation to justify disobedience. Temptation to pull away from faith and contrive inadequate human solutions instead.

When Satan had taken everything Job had, including his children, the Enemy was convinced that the destruction of Job's health would finally break him.
“Skin for skin!” Satan replied. “A man will give all he has for his own life. But stretch out your hand and strike his flesh and bones, and he will surely curse you to your face.”

We need to remember that when we become physically sick and tired, it can be the Enemy's ultimate weapon to break us. However, Job was determined to cling to God, never giving in to the temptation to curse God and die. Instead, he proclaimed his faith boldly in the midst of his utter physical misery Job 19:25-27.

When David was forced to give up his throne and flee from his own son, his trusted adviser betrayed him in his weakest hour by planning the perfect attack.

"I will come upon him while he is weary and discouraged and throw him into a panic, and all the people who are with him will flee."

If you're exhausted, it's a pivotal time to be on guard. Dr. Charles Stanley, in his sermon series on temptation, reminds us that Satan attacks hardest when we are (HALT) Hungry, Angry, Lonely, and Tired. Preparing for the temptations with scripture means we won't be blindsided. We also need to prepare for feelings of fear and isolation. The withdrawal of human support often accompanies intense spiritual attack. We counter that by seeking God's support in prayer.

While David fled, a relative of his old enemy taunted him, cursed him, and physically threw rocks at David along the way.
"Get out, get out, you man of blood, you worthless man!"

This is a taunt, strong rejection, and an accusation all in one. It tore at David's very character and self-image. These words resonate with me because in my grandma's demented state, she can say things like this almost verbatim. ("Get out, get out, you awful woman!") Sitting under a waterfall of nonstop criticism and personal insults is emotionally draining to say the least. Though the accusations aren't true, they still erode my strength.

Satan's name literally means "the accuser," and he specializes in tormenting people with false guilt and condemnation. He knows that as long as we are neutralized by feeling bad about ourselves, we won't be powerful in spreading the gospel, encouragement, or hope in the lives of others. We counter this by rejecting wrong thoughts and memorizing scripture that reveals how God views us.

To summarize, scripture clearly outlines the Enemy's exhaustion attack plan:
1. Physical illness to break us
2. Temptation striking at our weakest moments
3. Isolation and Fear
4. Personal insults/Criticism
5. Rejection
6. False guilt for non-sins/Condemnation for forgiven sins

Knowing the Enemy's attack plan can help us withstand the onslaught and not become victims of permanent despair. Instead of giving up, I can:
A) Determine to cling to God
B) Seek God's support in prayer
C) Memorize/pray these truths from God's word

My soul is weary with sorrow; strengthen me according to your word.
Psalm 119:28


Consider him [Jesus] who endured such opposition from sinful men, so that you will not grow weary and lose heart.
Hebrews 12:2-3

“Never will I leave you;
never will I forsake you.”
So we say with confidence, “The Lord is my helper; I will not be afraid. What can man do to me?”
Hebrews 13:5-6

"My sheep listen to my voice; I know them, and they follow me. I give them eternal life, and they shall never perish; no one can snatch them out of my hand."
John 10:27-28

The LORD is the everlasting God, the Creator of the ends of the earth.
He will not grow tired or weary, and his understanding no one can fathom.
He gives strength to the weary and increases the power of the weak.
Isaiah 40:28-29

Though I may not have control over my health or circumstances, I have control over my response to the weight of exhaustion. Like Job, I must cling to my Redeemer no matter the cost. By trusting in his death for my sins, I am destined for a better land where "moth and rust do not destroy, where thieves do not break in and steal," where there is "no more death or mourning or crying or pain."

Determine to persevere through exhaustion on your journey with Christ. The Lord is with you and will reward you for your faith.

Thursday, March 17, 2011

Living Better with Dysautonomia (Help #5: Diet)

*UPDATE 2/13/2012: Since posting this entry, I have extended my anti-inflammatory diet to include being strictly gluten-free (and mostly dairy-free). I have updated the suggested foods list to reflect this as well as my avoidance of MSG, soy yogurts with and without inulin, oats, and agave.

Help #5: Anti-inflammatory Diet + Salt

I don't know about you, but symptom flares typically send me running for the nearest comfort food. Daily I used to consume desserts like dark chocolate, ice cream, cookies, and cupcakes. For snacks, I relied on quick fixes like a bowl of cereal, toast, PB&J, popcorn, pasta, or a glass of juice. I didn't have energy to make fancy meals.

These foods helped me to feel good in the moment, but in the long run, I suffered symptoms of hypoglycemia, uncomfortable digestive problems, muscle aches, and terrible fatigue.

Over the past year, I've been equipped with more knowledge about eating an anti-inflammatory diet. Determining to do this has made a noticeable difference in my symptoms, but it is only part of the puzzle. I still experiment with diet choices and other treatments to optimize my health.

First and foremost, I've learned to cut out all unnecessary sugar and white flour.
This may sound impossible, especially when it's such a comfort. I didn't think I'd make it more than one day (two, tops) without desserts or high-carb foods. I decided to try going cold turkey for as long as I could, and after a few days of resisting the intense cravings, it was suddenly easier to say no to sweets. I trained my taste buds to enjoy a sweet potato without brown sugar. I drank tea instead of juice in the morning. Eventually, I grew accustomed to living on a low-sugar diet and began to enjoy the natural sweetness of fruit, the richness of cocoa powder in milk, and the creaminess of plain yogurt. I don't mean to say that I deprive myself entirely of occasional treats, but now that I see the benefits for my health, I don't go straight for sugar when I'm hungry. Instead, I go for protein, which is my next tip...

Second, I make an effort to base meals and snacks around healthy protein sources.
Instead of grabbing for toast when I'm hungry, I now reach for salted almonds. Instead of cereal, I scramble an egg. Almond butter with banana has replaced ice cream with banana. My new rule to include protein (or slow-digesting carbs) in every snack keeps my blood sugar stable and lessens fatigue. I don't experience sudden cravings and lightheadedness between meals anymore. Eating protein regularly gives me a more steady sense of well-being with lasting fullness and satisfaction.

Third, I have added in more organic vegetables and salads to my diet.
Salad used to be the thing I'd put Saran wrap over at the end of a meal because I didn't have room for it. Now, it's become a main course. Salad isn't boring when you can put a lot of protein on it. Some of my favorite salad toppings include crispy chicken sauteed in olive oil, crumbled bacon, shredded cheese, sunflower seeds, shredded turkey, bits of salmon or tuna, diced tomato and cucumber, or even a Mexican twist with seasoned ground meat, fresh avocado, onion, and cilantro leaves. In addition to building tasty salads, I've also learned to enjoy steamed vegetables like carrots, green beans, broccoli, and asparagus. A little salt and heart-healthy margarine make these vegetables delicious, and as a bonus, I don't feel bloated or sick after I eat them.

Learning what foods pack the most nutritional punch has continued to be challenging but fun. The book Anticancer: A New Way of Life started me off in the right direction by pointing me toward a diet rich in nutritious foods instead of settling for carryout burritos and prepared frozen entrees. Pairing this knowledge with a focus on protein and vegetables, while cutting back on sugar and unhealthy carbohydrates, has improved my health even more.

Beware of food allergies and sensitivities!
Hidden food sensitivities can sometimes play a role in how a person with dysautonomia feels. Diagnosing a gluten, nut, wheat, soy, egg, or dairy sensitivity could be vital to aiding your recovery, so I urge you to speak to your doctor about testing and elimination diets. Not all food sensitivities express themselves as stomach upset. Fatigue, rashes, and vitamin deficiencies can all be signals of a food intolerance. *I did not test positive for celiac disease but still found significant symptom improvement from eating strictly gluten-free and mostly dairy-free.*

In the meantime, remember that every food you put in your mouth contains powerful vitamins and nutrients that can influence the amount of inflammation in your body, just like any medicine or pill. Steering clear of sugar, white flour, and unhealthy, high-carbohydrate snacks may help you feel more clear-headed and less fatigued.

What about salt?
If you suffer from low blood pressure (which is common with dysautonomia), it's likely that your doctor has encouraged you to start a high-salt diet. Do this ONLY under the recommendation of your physician because a high-salt diet will raise blood pressure and can be potentially dangerous.

Be aware: Salt and sodium are two different things.

High school chemistry returns to haunt us! Salt is NaCl; sodium is Na. Salt is made up of 39% sodium. I was so sick and disoriented at my diagnosis that I missed this altogether and panicked at the level of salt prescribed.

If a doctor tells you to eat 8 grams of salt per day, they do NOT mean that you should eat 8,000 mg of sodium. They mean you should eat 3,120 mg of sodium. That’s still a lot, but thankfully it does not involve you solely eating SPAM and salt tablets. The best way to get enough sodium in your diet is to be liberal with the salt shaker. Try to avoid sea salt since the large, coarse crystals give you less sodium per serving than regular table salt.

If you need a quick boost of sodium, try chicken noodle soup. My favorite (gluten-free/dairy-free) brand is Kettle Cuisine.

Bottom line: Better fuel = Better function.
The more nutritious foods you can pack into your diet, the better your body will run. Reducing chronic inflammation through diet is a smart decision for anyone looking to improve energy and lower the risk of cancer.

Here are some of my new favorite simple and healthy snacks (*Updated 2/13/12*):

Numi Green Rooibos tea
Alvita Ginger Root tea
Microwaved sweet potato with cinnamon and pumpkin pie spices
Amande yogurt (almond yogurt: dairy-free/gluten-free/soy-free)
Walnuts, pecans, Blue Diamond Roasted Salted Almonds
Papaya smoothies with banana, pineapple, and lime juice
Redmond's Almond Butter with banana
Nuttzo (multi-nut butter, available in regular and peanut-free) on toast with a drop of cherry preserves
Scrambled egg with diced onion, diced bell pepper, and Rice Shreds cheese (also available for vegans)
Egg salad (egg, mustard, mayo) or tuna salad (tuna, onion, egg, mayo) on Udi's Whole Grain bread (gluten-free)
Salted hard-boiled egg
Baby carrots with or without hummus
Kind bars (coconut/apricot/almond)
Microwaved green beans or mixed veggies (as a substitute for chips) with an open-faced sandwich
Quinoa cooked in chicken broth with peas and pieces of roast chicken
Salmon baked in parchment paper with lemon, salt, pepper, and olive oil
Mashed avocado with minced garlic, cilantro, lemon juice, salt, chopped onion
Riceworks brown rice chips with rice cheese, salsa, or guacamole

Low-Carb Banana Nut Muffins
1.5 c almond flour
2 ripe, mashed bananas
1 tsp baking powder
1 tsp baking soda
3 eggs
1/2 c organic unsweetened applesauce
1/2 tsp cinnamon
1/8 tsp freshly grated nutmeg
1 tablespoon coconut sugar (heaping)
1 tsp vanilla
1/4 tsp salt
1/2 c chopped walnuts or pecans

Bake at 350 for 20-25 minutes. (Heavily adapted from "Eating Stella Style")

If you have any healthy snack ideas to share, please post in the comments!

Tuesday, March 1, 2011

Courage in the Lonely Hour

Courage in the Lonely Hour

Dr. Charles Stanley gives powerful encouragement for those who are struggling.

Sunday, February 27, 2011

Not Feelin' It

My grandma has lived with us since she had a stroke about three and a half years ago. Over that time, her ability to function has drastically declined; she has been diagnosed with more strokes as well as vascular dementia (similar to Alzheimer's).

This condition has completely altered her personality, compromised her ability to reason and think, and made her unable to deal with basic daily tasks such as the toilet and bathing. At this point, she requires 24-hour care and supervision so that she does not accidentally hurt herself or others.

Today I spent the afternoon and evening with her. She was having hallucinations the entire time, but she talked about them to me as if they were very real. Among other things, she saw a dog, a girl, a baby (behind her pillows), two mice in her bed, needles, water on the floor, threads, and her sister from out-of-state.

Every time she would reach for something that wasn't there or ask a question about an invisible visitor, I responded by telling her that these things weren't real. She knows that she has had a stroke, and so I explained over and over that she was having some trouble with seeing things that weren't there and that she was safe from mice and whatever else she was concerned about.

I thought this would calm her, but she continued unfazed, often telling me I was wrong. My words of comfort and reason meant nothing.

Grandma: Is it raining? (holding her hand up to feel for water)
Me: No, we're inside.
Grandma: Yes, I know, but do you feel rain?

Grandma: Is the little girl ok?
Me: There's no little girl. There's no one here.
Grandma: Yes, that's right, only you and me.
Me: Right.
Grandma: I think I should check on the little girl.

These conversations can become very sad and difficult because there is no communication happening. She refuses to believe that what she perceives could be faulty.

While I was watching her pursue investigations into people whom I assured her were not there, I was struck by the thought that it's human nature to trust what we see and feel over all else - even testimony of the truth.

In times of darkness, when I feel so alone and don't sense or see God moving, it's very easy to rely on my own perceptions as reality. I can often be overcome by the feeling that there is no end to our trials, that no one will ever understand, even that God doesn't care. And I can start to lean into that, even in the face of scripture that refutes me entirely. How many of us trust our own feelings and experiences over what we read in the Bible?

If I think about my experiences with my grandma, I can recall the many times I've lovingly tried to calm and correct her by exposing the deception of her hallucinations and revealing to her the truth of reality. I have been rejected repeatedly as she persists in trusting her feelings over my testimony of the facts.

It is convicting to me that during times of darkness when I read God's Word, I must trust in what it says above all else and not let my heart or my eyes lead me astray. The world is full of deceptive messages, false claims, hollow philosophies, and circumstances that are confusing. My heart is full of wrong ideas, flawed logic, misguided justifications, and the insidious influences of human sin. The only way to get through this dark time is to trust the light of the only pure truth there is in this world, the Bible.

When I look to the Bible, I see example after example of people in dark and hopeless trials - Abraham who had no child, Joseph who was sold into slavery by his brothers and landed in prison for a crime he didn't commit , Esther who risked her life to approach the king and save her people from mass murder, Ruth who lost her husband and followed her mother-in-law in poverty, Job who lost it all but refused to curse God, Shadrach, Meshach, and Abednego who were about to be burned alive for their faith but held firm...

These people all had no reason to feel hopeful, but against all hope they believed God and were not put to shame. It is to our great advantage in the darkness not to trust our own flawed sense of reality to guide our choices. Doing that is like relying on a broken compass in order to get us to our destination. Instead, we must trust in the Word of God above all else, like a lighthouse that is shining our way safely home.

"Then you will know that I am the LORD; those who wait for me shall not be put to shame."
Isaiah 49:23

Thursday, February 24, 2011

Living Better with Dysautonomia (Help #4: Compression)

Help #4: Compression Stockings

POTS affects blood flow. Because my body does not respond properly to gravity, blood that should be circulated into my head ends up pooled in my legs and abdomen when I am upright. This leaves me feeling lightheaded with a rapid heart rate and low blood pressure - perfect ingredients to feel faint and ill. When I put on compression hose, the stockings squeeze the vessels in my legs to keep blood from settling there. This increases my ability to stand and sit up and helps get more blood/oxygen where it's needed most - my head!

Never fear! You won't look (too) weird in these. :) When covered by pants and socks, they are hardly noticeable.

The best part about compression stockings is that they are constantly working. Unlike medication that has to be taken on time and can wear off, these stretchy socks remain tight and effective for as long as I need to be upright.

Summertime used to make me hesitate to use compression hose. For one thing, I wanted to wear sandals, and for another, I didn't want to feel too hot. But without compression, I found that my ability to stand with minimal symptoms was severely limited. Support stockings are worth the sacrifice to remain vertical. I have invested in lightweight crop pants and a cute pair of closed-toe summer flats that look just as nice as sandals; these enable me to wear my compression hose inconspicuously even in warm weather. Another alternative is to purchase open-toe stockings.

For special occasions like a party, I like to switch from the knee-high to the full-length hose. That extra support on my upper legs and abdomen is noticeable and helps me to remain more clear-headed when trying to keep up with conversation. I won't lie and say that the full-length are easy to put on, but once the wrestling is over, it's well worth the sacrifice to have that extra boost to my blood flow all day.

Now, the main questions I had when first buying compression hose are:
"what brand?"
"what strength?"
"where to buy?"

  • My preferred brand is Jobst. (comfortable and hold up very well)
  • My doctor recommended 15-20 mmHg strength for me. (could be different for you!)
  • My preferred store is brightlifedirect.com.

BrightLife offers a variety of brands at different prices and allows you to try on and return stockings that don't fit. Through their site, I found athletic knee-high socks which are a nice change of pace from the pantyhose version. I was also able to try two brands of full-length stockings to determine which sheer style worked best for me.

Ideally, it's good to replace your stockings every 4 to 6 months (since they get stretched out), but I've found that with good care and rotation of multiple pairs, I can use them longer, understanding that my older socks aren't quite as effective as my newer ones.

Sunday, February 20, 2011

What's the use of praying?

Here is a funny story I heard on Friday:

there was a teenage girl in the dentist office yesterday
she was waiting with her mom, texting like crazy
and her mom's phone beeped
and her mom ignored it
and she's like "moooooooom. You got a text"
and she's like "well I'll get it in a bit, it's probably not urgent"
and the girl said "MOM, when you get a text, it's ALWAYS URGENT"

There is a false sense of urgency when it comes to communicating with technology today. It used to be that when you left the house, no one could reach you until you came home. Voicemail, email, instant messaging, Twitter, Facebook, and texting have changed all that. As I think about how quickly I respond when my phone beeps, it makes me consider how my expectation of instant feedback influences my perception of prayer.

The new pastor at my church once compared praying continuously to God to texting regularly throughout the day. It's an interesting comparison to be sure, but do we need God to respond immediately for us to feel he's heard us? What happens when God makes us wait for our answers? Do we slow down sending our messages or give up altogether?

I have always been taught that a regular prayer life is essential to following Christ, but I have struggled at times with keeping a dialogue going with someone who doesn't audibly speak back. During times of darkness and suffering, praying becomes even harder for me. Not only am I not hearing anything, but the stakes are much higher. I'm not asking for nice weather on a vacation or a convenient parking spot. Requests made of God during suffering are serious and, in my opinion, urgent.

This past week was an especially difficult one for me. I had come to the point where I felt like my prayers did not matter, my opinions and feelings disregarded, my messages to God pushed aside. It was as if I had inwardly given up on the power of prayer, going through the motions but feeling defeated before I began. This inward sense of halfhearted begging seemed insurmountable to me until I read about David's prayers for his firstborn son with Bathsheba.

God had already told David through a prophet that his son, the product of an adulterous affair, would die. David, repenting of the affair and of murdering Bathsheba's husband, prayed to God to spare his son's life. He didn't just bow his head and ask quietly. He fasted, wept, and threw himself on the ground in complete desperation. Why did he bother when God had already spoken? After his son died, David explained that while his son was still alive, he thought there was a chance God could relent and spare the child.

The Bible study I'm doing caused me to stop and think about the boldness of that prayer. David had committed the sins of adultery and murder. He was obviously in the wrong and had not repented on his own for many months. God finally confronted him, showed him mercy by sparing his own life and his kingdom, and still David prayed for more mercy. As it turned out, God did indeed give David blessing through another son born to Bathsheba - the future King Solomon.

If I had been David, I think I would have simply grieved the inevitable. God had spoken. Who am I to try to ask for more? To try to avoid my consequences? This is how I pray now - as if the Lord has spoken and I am a passive object with no say in the matter.

The study notes pointed out that we all should pray passionately as David prayed.

  • "Through David's crisis, he was reminded of all he knew of God's ways. David did not plead with God out of ignorance or naivete, but out of his intimate knowledge of God. God does indeed hear our prayers and reserves the right to relent if the change does not compromise an eternal necessity."

For proof, I was guided to look up the story of Moses interceding for Israel in Exodus 33:3, 15-17 as well as Hezekiah pleading for God to extend his life when he was about to die in Isaiah 38:1-5.

These stories of God responding to human prayers gave me renewed strength to pray. This time, I am praying with boldness and expect to be heard and for God to respond. Maybe he won't respond as quickly as I feel he should or in the ways that might seem most obvious, but I'm newly motivated when I read that God's heart is moved to action by faithful, fervent prayers.

The study went on to summarize:
  • "David knew something about his God that we need to realize as well. God did not create man in His own image to be unaffected by him. More than any other creature, we are products not of His head, but of His heart. Numerous times in Scripture God responds to the needs of His people with the words, "I have heard your cry."

If you have run out of steam in your prayer life and feel that God is ignoring your urgent messages to him, don't fall for the lie that your prayers aren't making a difference. Jesus encourages us to be persistent in our prayers - to always pray and not give up.

And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? I tell you, he will see that they get justice, and quickly.
Luke 18:7-8

Monday, February 7, 2011

Living Better with Dysautonomia (Help #3: Water)

Help #3: Water

It's very important to stay hydrated when dealing with POTS/dysautonomia. When you struggle with low blood pressure and high heart rate like I do, having water on hand constantly is essential.

Why drink smartwater? Smartwater is purified water and contains electrolytes - potassium, calcium, and magnesium. Granted, the small amounts of these electrolytes aren't going to replenish the body like a sports drink. However, smartwater contains no sugar or dye, has a fresh, clean taste, and is vapor distilled to eliminate contaminants that are found in tap water.

Personally, if I am going to have to drink water constantly, I want it to be safe and to taste good. I also want it to be easily portable. I take these bottles with me everywhere. Since the environment is a concern, it's important to note that the bottles are recyclable and reusable.

I've been drinking smartwater since my doctor recommended it years ago, and it has definitely been worth the investment (about $1 per liter) in terms of taste, portability, and health benefits.

Saturday, January 29, 2011

Living Better with Dysautonomia (Help #2: Yoga)

Help #2: Yoga

Since the extent of my yoga "experience" is comprised of 2 individual classes taken about 7 years ago, I wouldn't consider myself a yoga buff. However, last summer I read an article about how doing yoga can help recovered cancer patients sleep better. I figured that since I had trouble sleeping, fatigue, and needed to do some mild exercise anyway, it couldn't hurt to look for a yoga DVD.

I began my search by previewing yoga DVDs from the library. My criteria for a good video were as follows:

1) Most exercises had to be done either lying down or sitting.
2) I needed to feel like I'd stretched my entire body by the end.
3) It had to have one continuous routine, not disjointed clips of single positions.
4) I wanted it to be dynamic enough to feel like exercise but relaxing enough to relieve stress.
5) All of this had to occur in about 30 minutes or less. I can't spend the whole day doing yoga.

Despite many stress relief videos on the market, it was hard to find a DVD like this. I can't stand perched on one leg for 5 minutes with POTS. Blood pools in my legs, and the longer I stand still, the worse I feel. It was very important to find just the right routine for my energy level and medical needs.

Some videos were too fast, too aerobic, and I couldn't keep up.

Still others had me too relaxed, lying still for several minutes at a time. By the end, I felt like I'd just had an unsatisfactory nap on the floor.

So, it was with some Goldilocks-type excitement that I stumbled upon the DVD "Easy Yoga" by Gaiam with Suzanne Deason. Now, this is not the "perfect" DVD for POTS. It is, however, an easy and thorough stretching routine that refreshes me on days when I am lacking energy.

At first, I almost discarded it because of a series of standing stretches in the middle of the routine. However, I decided that I could manage with very slow transitions or even skipping certain postures.

The routine moves along at quite a fast clip initially, but with practice, I can now settle into most positions early enough to have plenty of time to stretch and transition to the next move.

The flow of the routine is very smooth. I never feel like I'm being jarred into a new position. The momentum builds very naturally from relaxed at the beginning to strength-building of the legs and then back to relaxing again.

I felt an increase in flexibility and muscle tone after doing the routine just 2-3 times a week for a couple weeks.

It requires a mat, a block, and a strap. I have a mat now but previously used a blanket. I skip using the block (you could use a book) and grabbed an old belt for a strap.

Breathing is key when doing this routine. At first, it was hard to coordinate the movements with the breath instructions, but once I practiced, the breathing felt natural and enhanced my stretching and stress-relief quite a bit.

It's important to note that I tried taking a hard line with myself when I first bought this DVD. I forced myself to do the routine on days when my fatigue was intense. Pushing my body too hard made my symptoms worse, so I have learned to pass on exercise if I'm having a particularly bad day. Respecting my physical limitations helps me function at my best.

Finally, I will end this review with my favorite part about the DVD: the last pose. After the rhythmic waves of stretching and breathing decrescendo to the last posture, I savor that peaceful place. You'll have to check this video out of the library or buy it to experience it for yourself!

Friday, January 28, 2011

Living Better with Dysautonomia (Help #1: Support)

In this and future posts, I plan to share things that have helped me on my journey to living better with POTS (a form of dysautonomia). These tips may not be right for everyone, but they are options that have worked for me. I hope that these posts will be an encouragement to those of you struggling with chronic illness. As this series progresses, please feel free to comment on what has helped you too. I am always looking for ways to improve my overall health and quality of life!

(Update: I originally started blogging this series in a random order, but I have reconsidered and decided to post in order of what has helped me the most. For those of you observant readers, you will notice that I have changed my number one help to be support because I think that is a critical need for those of us with ANS dysfunction.)

Help #1: Support

I will never forget those early days of diagnosis. One powerful word comes to mind when I think of that time: isolation.

I was confused, very sick, unable to work, and I couldn't get straight answers about treatments or my prognosis. Tons of questions swirled in my head. Would I ever stand again without being dizzy? Would I ever drive? Could this be permanent? What medications work best? Am I on the right doses? Will I have to give up my career?

Additionally, I felt life slipping through my fingers, but none of my friends could truly empathize. Their lives went on as normal. They hadn't even heard of my condition before.

As a researcher, my first inclination was to do a Google search about POTS. I landed at dinet.org and found home. At DINET, not only could I find valuable information about my illness, but I found an active forum to support me through my emotional struggles, questions, and grief. The devastation of being disabled at age 23 was understood by peers who were enduring the same thing. Seasoned veterans, already adjusted to life with POTS, offered wisdom and hope to us newbies. Every step of the way, I had a reliable place to go for comfort and advice.

If you suffer from ANS dysfunction or think you might suffer from it, DINET is the place to find support. I have made some dear friends through this site. During a time of life when I felt no one could possibly relate to what I was going through, these friends could. Even now, as I endure multiple trials on top of illness, I'm continually encouraged by them, for they understand what it feels like to hurt deeply, to not be understood, and to struggle for years with no end in sight.

DINET is a place that provides hope, education, and compassion. These are invaluable treasures to a person suffering with dysautonomia.

Tuesday, January 18, 2011

The Now and The Not Yet

When I read this verse this morning, it filled me with hope for the future.

Beloved, we are God's children now, and what we will be has not yet appeared; but we know that when he appears we shall be like him, because we shall see him as he is.
1 John 3:2

The ESV Study Bible note on this verse states:
What we will be means having glorified bodies that will never be sick or grow old or die, and being completely without sin. No one like that has yet appeared on earth (except Christ himself after his resurrection).


I am pressing on today because as God's child, the best is yet to come!

Tuesday, January 11, 2011

Breaking the Cycle

Treating dysautonomia is often a game of trial and error. The autonomic nervous system is dynamic and complex, and the reasons for its dysfunction can be varied and not easily pinpointed. One person might have a genetic predisposition. Another person's case might be due to a trauma, surgery, child birth, Lyme disease, or a viral component.

The origin of my illness was likely due to exposure to toxic mold and then subsequent pesticide exposure. Though I could limp along and appear to function for a while, it took years for my symptoms to manifest in a way that completely incapacitated me. A flu virus pushed my already weak body over the edge, and after collapsing, I could no longer go on with my daily life.

Treating my dysautonomia has been difficult. Mostly, I am told to live life within my limitations, take in plenty of salt and fluids to maintain blood pressure, and to perform mild exercise as I am able. These treatments have only taken me so far, and so I sought the opinion of a specialist in chronic illness last fall.

This physician urged me to try a new diet free of sugar and carbohydrates, based on her diagnosis of "leaky gut syndrome." In her opinion, my past mold and chemical exposures caused damage to my intestines. The cells lining the intestine are normally very tightly knit together so that only nutrients and vitamins can be absorbed into the bloodstream. However, with increased intestinal permeability, the gaps between these cells widen, allowing larger particles, toxins, and bacteria into the body. As she explained, this creates a cycle of inflammation and inappropriate immune response that manifests as systemic disease, fatigue, stomach problems, aching muscles, and even autonomic nervous system dysfunction.

Trying to break this inflammatory cycle is difficult and requires me to make positive choices almost hour by hour about what I will put into my body. If I put in the wrong foods, my gut won't be able to handle the onslaught, ultimately leading to more inflammation and increased symptoms.

When I woke up from a recurring dream last night, the fight to keep my thoughts from dwelling on the dream reminded me of my struggle with leaky gut syndrome. Every time I tried to quit thinking about the dream, it came back again. I knew from past experience that if I allowed these thoughts to permeate into my mind that I would have a full-blown assault on my emotions, which would lead to "spiritual inflammation" and losing my sense of peace.

It occurred to me that areas of weakness in my thought life create a "leaky mind."

For example, I am often tempted to compare myself to others. I'll be consuming a diet of Facebook photos when suddenly one will trigger an envious response. I'll feel like less of a person compared to what that person has. I'm also tempted in other ways - to fear, to not trust God, to covet, to dwell on the past, to feel guilt and condemnation, to be discontent with what God has given me - just to name a few. All these areas of weakness are like gaps in my spiritual defense. Negative thoughts leak in through these weaknesses, and before I know it, more unpleasant thoughts lead to negative emotions, which lead to a full-blown spiritual attack. Then I feel defeated, like I can't even lift my head. It takes a lot of encouragement to come back from a blow like that, so the best way to head it off is to break the cycle at the beginning. This starts with diet.

Just like my food diet, I have to be disciplined to make good choices every minute and every hour about what I "consume" mentally. I am responsible for what my eyes take in, for what I hear, for what I choose to dwell on, and if I repeatedly choose healthy thoughts, I lessen the chance of a tempting idea taking me down into an all-out defeat.

The similarities of my physical and spiritual condition are fascinating to me. We as people are consuming all the time in order to exist. We must eat food, and we must consume ideas, philosophies, and thoughts that bombard us on a daily basis. Our minds can only filter out so many negative things until we are overloaded. I have realized during this time of trial that my mind is extra-sensitive to negative input. It's my job to repeatedly reject those unbiblical thoughts before they leak in and reignite the cycle of spiritual inflammation.

By repeatedly rejecting wrong thoughts and instead pursuing a diet of right thoughts, I've found that I can live at peace spiritually, even in the midst of temptation and trial.

Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that your brothers throughout the world are undergoing the same kind of sufferings.
1 Peter 5:8-9

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.
Philippians 4:8