mold illness – Page 5 – Jesus is for the Wounded

Puffy white clouds and 5 sparrows

Published on June 22, 2014June 22, 2014 by Jesus is for the WoundedLeave a comment

⁶Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. ⁷Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows. Luke 12

At first it looked like a gentle breeze flowing through the branches of the variegated dogwood bush outside our bedroom window. Puffy clouds drifted past the backdrop of the truest “sky blue” you could desire on an early summer afternoon. Such a simple scene, peaceful too. Then again the rustling appeared to come from below my view. Was there, wait, yes maybe there’s a little critter in there moving the branches about? And lo there she was: a lone house sparrow spritely jumping about within the leaf cover in and out of my view just a few feet away. Better not move a muscle or I might disturb the work of my feathered friend. Does she know that I could almost reach out and touch her marbled wings if the screen window didn’t separate us, didn’t provide secluded freedom for your Saturday play . . .

The little one flew away as my gaze returned to the light blue walls next to the bed inside the window. Maybe if I waited just a little longer another visitor would appear? To my delight the green-with-white birdhouse was rustling again from the top, the bottom, and even just beyond my view! Let’s see: there’s one, two, three . . . a fourth appeared and darted deeper into the cover of leaves as a fifth little birdie perched right in front of me too. Silly little one. He began preening his ecru-colored chest feathers without a care in the world as the branch bobbled up, down, and all around. He reminded me of my brother’s childhood parakeet, Perky. How they flex their necks so steeply to reach the soft feathers that form a collar of fluff I’ll never know. Such a curious, skittish, carefree creation indeed. Then in a matter of a few seconds, they all flew away . . .

I was alone again. Maybe I could try to move my head and adjust the comforter covering my chilled shoulders? Yes, that’s good. But to move my legs and arms was not to be just yet as my attempt to do so triggered another mini seizure attack episode. Sigh. I thought I would be recovering by now. Not so. Oh well, when my husband comes back I’ll ask him to bring me the lunch I had made myself earlier and put into the frig in case we were to go out on our tandem outrigger canoe this afternoon. What a nice treat I thought it would be to have something made ahead of time that fit my special diet and tasted yummy too. Not quite. Gratefully it wasn’t too long before he returned to check on me, brought me the container of rice paper finger sandwiches and fed me several bites, one by one. Then he put the bicycle water bottle to my mouth so I could sip some water and wash down the food sticking to my throat as I lain sideways on the bed. A few bites, a long sip, a few bites, a long sip. He has this routine down pretty well by now. Thankfully these complete neurological collapse episodes only happen every 10 days lately. They used to be every couple days . . .

In time my strength returned and I was able to put a pillow under my own head and feed myself. Unfortunately something triggered a major seizure jolt when my beloved returned, setting me back again for awhile. He was sitting close to me and I suddenly needed some fresh air from outside the window. Stevers obliged then left me alone again to recover per our routine for these sort of things. Again I revived. Eventually I was able to weakly get out of bed and start to put on some clothes. That’s a nice thing to do after a shower at 2 in the afternoon. I was feeling a little funny lying there naked rolled up in the comforter. Oh well. It’s the best I could do after beginning to collapse in the shower an hour earlier, struggling to dry myself off, and Steve helping me lie down as it appeared I would be falling over any moment. Flash forward almost two hours as the episode was resolving I was grateful to be able to move my left arm again. Looks like I would be o.k. albeit shaken for several more hours anyways . . .

Sitting outside in the sunshine helped me regain my strength. Of course I had another one of my low oxalate snack concoctions (white chocolate!) and a refill of cool water in my trusty Summit City Bicycles and Fitness water bottle. Little did the guys at the shop know how helpful that bottle had become when I needed a special flow-control mouthpiece to refresh me when in bed, not on the Fort Wayne River Greenway! Maybe someday soon I’ll get back on my bike. I am grateful to have had a test run of two miles earlier this Spring; I should be able to repeat a short ride on a better Saturday afternoon really soon, Lord willing. How hard could it be to peddle a few miles? Well anyways sitting outside on our patio later this afternoon with pretty gardens all around me and the sun still shining brightly overhead did me a world of good. The puffy white clouds still filled the sky and I could hear sparrows, robins, and more in the distance. I got up to pluck a few weeds, pick a few radishes, tinker here and there before returning into the house. Perhaps my beloved would understand that this day would be better spent at home than paddling on a lake somewhere? Change of plans. Enduring these kinds of afternoons together makes it obvious what we should do, more than words can ever say . . .

The rest of the day was decent as I prepared a nice dinner and some food for tomorrow in case we are able to reschedule our outing on the water together. I do try to be hopeful, eh? As most Gentle Readers would recognize in this blog we tend to live our lives over here a bit spontaneously: making plans more at the last minute, in the afternoon or evening, and after checking the weather report/Julie’s snack supply/whatever we can reschedule to be able to get away . . .

This evening? Not so nice. We are just not sure what is going on with these wretched evening episodes again. After a full year of 1-3 hour episodes virtually every night after dark and up to 30 minutes most mornings, you would think one of these specialists I’ve seen would have figured it out! Yes, my melatonin level is off the chart and melatonin levels change at night. I am getting out in the sunshine just about every day, exercising at night, avoiding foods with tryptophan (that tends to elevate melatonin) and more per my internet research on the subject yet the excess must be persisting. (Labs to follow!) Then my new biotoxin doctor laid a good one on me yesterday, saying that if anyone could figure out what to do IT WOULD BE ME SINCE I KNOW MY SITUATION THE BEST. Whaaaat? Why do you think I pursued your clinic out of State? I was hoping YOU could figure it out! Even my brilliant functional medicine doctor in addition to your brilliant functional medicine colleague have largely set me adrift. Now you are saying since I cannot tolerate Dr. Shoemaker’s biotoxin protocol that you cannot help me either? If you think I was able to figure this out would I be calling you? Geez oh man. Lord, come what may . . .

Back to the story of the bird in the hand is worth two in the bush OR wait a minute: there aren’t any birds here right now since it’s after 4 in the morning! Yes, I’m back to my late night schedule again. Let’s see . . . perhaps Luke 12 can remind me that just as the Lord provided me a sweet distraction of His delightful creation in my time of distress, He cares for me and for Steve in our times of distress too. He has provided for our needs despite the incredible expenses, sustained us during multiple special events when extraordinary measures were needed to keep me as safe as possible, and granted me the time and space to get well when I cannot work. I am grateful for my incredibly loving husband, a pretty home and gardens to enjoy when I cannot go out, and sparing of my abilities to think take care of my basic needs. Sometimes I need to wait for the Lord’s timing on some of these things which is o.k. too. I have learned to appreciate blessings in smaller packages with gratitude as they present themselves each day . . .

So I choose to take to heart His statement, His promise to care for all of the details of my life. He knows all about what is happening over here and desires for me to be courageous, not afraid. He has laid it on my heart that He has a plan and a future for my life (Jeremiah 29:11) and that nothing will separate me from Him or His will (Romans 8:38). I get this. Perhaps it’s why I don’t spend as much time crying anymore when the wretchedness comes. Instead I’ll say,

³Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, ⁴and endurance produces character, and character produces hope, ⁵and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5 (ESV)

With the lightness of heart shown to me by my Creator God this afternoon in my time of need, I’ll take the last word of the paragraphs granted by His grace and noted above:

This new day will come anyways, and no matter what may come or others may say, I will find a way to play with lightness of heart in celebration of the One who goes before me and will never go away!

Thank you Jesus for your Word, for your gift of words. Thank you for helping me get through that to which you have called me and should any good shine through may it be for your glory Lord. If it is your will I ask for your healing mercies and a time of blessing. I lift up my husband (Steve), and my brother (Mike) too for your anointing and blessing. If there is anything hindering our walk with You, please guide us, restore us through your Holy Spirit so that we may delight in sweet fellowship with you all of our days.

In Jesus’ name I pray. Amen.

A Psalm for Times Like These

Published on June 21, 2014 by Jesus is for the WoundedLeave a comment

Psalm 40

New International Version (NIV)

For the director of music. Of David. A psalm.

¹I waited patiently for the Lord;
    he turned to me and heard my cry.
²He lifted me out of the slimy pit,
    out of the mud and mire;
he set my feet on a rock
    and gave me a firm place to stand.
³He put a new song in my mouth,
    a hymn of praise to our God.
Many will see and fear the Lord
    and put their trust in him.

4 Blessed is the one

    who trusts in the Lord,

who does not look to the proud,

    to those who turn aside to false gods.
5 Many, Lord my God,

    are the wonders you have done,

    the things you planned for us.

None can compare with you;

    were I to speak and tell of your deeds,

    they would be too many to declare.

6 Sacrifice and offering you did not desire—

    but my ears you have opened—

    burnt offerings and sin offerings you did not require.
7 Then I said, “Here I am, I have come—

    it is written about me in the scroll.
8 I desire to do your will, my God;

    your law is within my heart.”

9 I proclaim your saving acts in the great assembly;

    I do not seal my lips, Lord,

    as you know.
10 I do not hide your righteousness in my heart;

    I speak of your faithfulness and your saving help.

I do not conceal your love and your faithfulness

    from the great assembly.

¹¹Do not withhold your mercy from me, Lord;
    may your love and faithfulness always protect me.
¹²For troubles without number surround me;
    my sins have overtaken me, and I cannot see.
They are more than the hairs of my head,
    and my heart fails within me.
¹³Be pleased to save me, Lord;
    come quickly, Lord, to help me.

¹⁴May all who want to take my life
    be put to shame and confusion;
may all who desire my ruin
    be turned back in disgrace.
¹⁵May those who say to me, “Aha! Aha!”
    be appalled at their own shame.
¹⁶But may all who seek you
    rejoice and be glad in you;
may those who long for your saving help always say,
    “The Lord is great!”

¹⁷But as for me, I am poor and needy;
may the Lord think of me.
You are my help and my deliverer;
you are my God, do not delay.

(Amen.)

When you find your voice again

Published on May 21, 2014May 21, 2014 by Jesus is for the Wounded4 Comments

Perhaps it is a silent presence, a type of mindfulness that can speak as loud as a mountaintop yodel in a life-changing moment. Or maybe you must shout it out, screeching through a resistant case of laryngitis just what is on your mind. Then there are those measured words spoken through gritted teeth; oooooh, I hated when my mother uttered those when I was a child! A crazy person makes sense only to his or herself when the disemboweled utterance emerges from the trouble soul within. And the most agregious is the spine-tingling barbs of an angry person that can cut to the heart every time. Sure wish I had more of the first one and less of the others in my history!

A gentle answer turns away wrath,
but a harsh word stirs up anger. (Proverbs 15:1)

Yes indeed.

The seizure attacks came quickly this evening as soon as my face hit the head of the bed, elevated with folded blankets to promote sinus drainage and ease the chest compression of a recent infection. My left arm was tucked along my left side with my head turned to the right as I lain partially face-down. This position causes less neck and shoulder pain so it is often my go-to position when I sense the episode ramping up. The head-banging and shoulder trauma are minimized but the wrenching of my neck is nasty. Oh well, that’s what the chiropractor is for, right? Sigh.

Eventually I screeched out some “help me Lord” utterances with what was left of my voice box today. That came whilst straining to cry out to my Jesus with an acute illness on top of the mysterious seizure-like tics that plague me every morning, evening, and after exposure to noxious stimuli. I can’t even cry right! Then things got incredibly darker. In defense of my sanity I won’t go into details here so let’s just say that frightful images passed through my mind. Then in my mind’s eye I could see the images on my arms. Just then I noticed that Steve was stooping over the side of the bed beside me in the dark. Holy crap! His sudden appearance in the dark scared me further. My body writhed with seizures, now lying on my right side with Steve behind me. My arms flailed in the air, my legs flapped together then apart, and the screeching sound of my hoarse voice screaming holy terror would exceed any scene I’ve viewed from a psycho thriller for sure. But this was not a movie. This was ME!

A few decades ago some really bad things happened to me when I was a kid. I spent about 12 years as a young adult in many kinds of therapy, therapy groups, 12-step recovery groups (Al Anon Adult Children of Alcoholics), faith-based and 12-step weekend retreats, and reading tons of self-help books. True healing came when I got saved and the person of Jesus Christ showed me his love, care for me, and plan for my life if I would follow His lead. He was restoring the years the locusts had eaten (Joel 2:25) when I met my intended beloved and married Steve. I felt happy and free at last. Four years later I got very sick with viral hepatitis, Lyme disease, and Chronic Inflammatory Response Syndrome (related to mold). I haven’t been able to work in two years largely due to the seizure attack episodes multiple times per day. They are heartbreaking for both of us in addition to many other folks who have witnessed them too.

Over and over again I have searched for meaning, a purpose for this extended illness. The incredible expenses of remediating our home for mold in early 2013 surely tested our marriage for sure. We were living in a hotel while navigating a myriad of details and tough decisions as Steve travelled between work, home, and the hotel; his daughter chose to continue living in the house and help us out during the entire process. Eventually our dog joined us in the hotel. Eventually we completed the remediation, opted not to sell our house, and moved back home. However, the seizure attacks never stopped! By summer of 2013 they increased to up to 4 hours per day! No medical professional or online research has found an answer yet. Somehow Steve and I grew closer through it all as our hearts were breaking; the pain and suffering has been great.

Recently the Lord did show me a few tasks that needed to be completed in our marriage. The love between Steve and I over these past 2 1/2 years has become strengthened, deepened because of this difficult journey. We have now turned our residence into a “safe home” which restricts visitors or the conditions under which others may enter our home. This helps prevent exposures for me that could cause a negative reaction (aka seizures!). I love that my beloved is helping to protect me in this way so that I can get well. I love that he has been faithful to the Lord and to me through this entire journey. Others are watching us and I understand that we are doing some things right! My own restoration and healing from the past may have provided a foundation for the important growth in me that has happened of late. I am grateful to be able to recognize the good that is here along with the challenges. There is always good along with the challenges if we look closely enough . . .

Back to the scene in the bedroom. I asked Steve to move from where he was stooped behind me to the other side of the bed where he would be in front of me. The uncontrollable hell that was ravaging my weakened frame was frightening enough not to have a sense that someone, even someone I dearly loved, was lingering over me from behind. Steve knows all too well that if he touches me during an episode it can magnify the symptoms significantly. I just couldn’t risk a casual brush of a hand; my distress was already unbearable. Then the breakthrough began to happen. Speaking up despite the hoarseness of my voice rose up some inner strength I had never sensed before. I had to ride out the frightening images and thrashing about, my estimation of what weeping and gnashing of teeth might be like in a Biblical description of hell. Tears came. Silence followed. I was able to ask for what I really needed when scared.

Soon my gracious and godly husband was gently sitting beside me. I’m not sure if he was more horrified or moved to compassion! We processed the scene. His eyes held mind for a long time in the darkness before I was able to reach out and touch his arm. Soon he was able to reach out with comforting touch for me as well. Somehow we knew that my intolerance to intimate touch for the past 6 weeks was finally broken. I was able to lie in the arms of my beloved once again.

My writing this story includes a great deal of literary and intellectual license. I mean that I think I might know what is going on, the purpose and meaning in some of this suffering, but there is only one person who actually knows the truth: my Heavenly Father. I am glad that I found my voice in the darkness this evening. I am glad that I survived a wretched scene without too much damage or lingering baggage. I am grateful to have reconnected with Steve and that he could look beyond the ugliness to the beauty imbedded in this crazy journey together. I trust that the Lord will go before us in the next scene and lead us in His way everlasting for His purpose and glory. Lord willing it won’t be so bad next time.

Thank you, Jesus, for your redeeming grace. You make all the difference in the world for me, tonight and always. Thank you for your enduring mercy, giving me have the strength to do that to which you have called me (Philippians 4:13). Be my voice in the darkness and in the light. In Jesus’ name. Amen.

The How Long Song

Published on May 20, 2014May 21, 2014 by Jesus is for the WoundedLeave a comment

¹¹With this in mind, we constantly pray for you, that our God may make you worthy of his calling, and that by his power he may bring to fruition your every desire for goodness and your every deed prompted by faith. ¹²We pray this so that the name of our Lord Jesus may be glorified in you, and you in him, according to the grace of our God and the Lord Jesus Christ. 2Thessalonians

You just never know who might be praying for you at this very moment. If you have let your needs be known to anyone who is faithful to pray on occasion, it is very likely that at some point in time you are being lifted up before the God of the universe for His gracious care. We might never know when that moment occurred or what was said. We might feel a lightness in our human spirit or we just many never feel much of anything except our suffering. But we can know this for certain: that the God of the universe, the one Who made you and me, was listening at that moment. His heart moved with compassion as your name came before His throne of grace that day. And His thoughts towards you then and now outnumber the grains of sand on the earth (Psalm 139:18). He loves you and me so much more than we can ever, ever imagine . . .

Our Heavenly Father has His hand on us. His hand both reaches out to us and carries us through the mire in our lives. We know that all things work together for good for His own, even the suffering. Sometimes we get to see this in our lifetimes and sometimes we do not. Our awareness doesn’t change the truth of the matter. He is in charge and will use our suffering for His glory: a greater purpose than our own lives (Romans 8:28). Wow. We may be relieved, blessed, redeemed, or justified too as he pours out His goodness. We must hang in there for we cannot know what the next moment or next day may bring. Even when the troubles continue on and on, in the words of Job to the Lord,

²“I know that you can do all things;
    no purpose of yours can be thwarted.
³You asked, ‘Who is this that obscures my plans without knowledge?’
    Surely I spoke of things I did not understand,
    things too wonderful for me to know.

⁴“You said, ‘Listen now, and I will speak;
    I will question you,
    and you shall answer me.’
⁵My ears had heard of you
    but now my eyes have seen you.
⁶Therefore I despise myself
    and repent in dust and ashes.”

This is such an incredible witness of humility coming from a man covered in oozing boils, having lost all of his earthly possessions and children as well. I cannot imagine such suffering even on my worst days. Despite the episodes of wretchedness that continue to plague most of my mornings, afternoons, and evenings I will remain faithful to my call to love Jesus and trust in His plan for my life. Otherwise this journey of mine could be deemed meaningless. Suffering for nothing is the alternative. Holy cow, that would never get me out of bed in the morning! A searing post-seizure neck headache and global pain puts the creamy taste of even the best bulletproof coffee down the drain every time. NO WAY! Only the promises and reassurance of my Lord and Savior are enough at these times.

The only way for me to endure the stress of my life at the moment is to let Jesus take the wheel. Sometimes I just sit and stare for many minutes at a time. Sometimes I am not “productive” in a day until what others would call dinnertime. And sometimes I get a few things done then go back to bed for a long time. Graciously there are a few other times of late when I can get up earlier while it is still morning and remain out of bed for the rest of the day. Hey, I might be getting better after all! I used to go to bed between 3 and 5 in the morning! That pattern is generally broken and for that I am grateful. Like my Grandma used to say, I’m getting there, “slow but sure.”

The How Long Song must leave my vocabulary. Like the Ann Lander’s article quoting Robert Hasting’s article called The Station, we will “get there” when it is time. Life is about the journey dontcha know? Further, we will “get there” when the Lord wills it. My job is to endure well, the journey I am called to take, seeking His will and keeping an eye out for His fingerprints along the way. Let me not miss any measure of His sweetness in the sound of a calling bird or the bloom of a wildflower in unexpected places. He will never lead me astray (Hebrews 13:5) and never require more of me than I can handle (1 Cor 10:12) with His grace. He is with me now and until the end of the ages (Matthew 28:20), the end of my life. That is reassuring indeed.

I’ll close with an unexpected blessing that has come right in the thick of all things stressful over here. Twenty minutes of bliss. Cool beans, eh?

Julie and Kinsey cruising along in the tandem outrigger canoe!

And then you just hope to move sideways

Published on May 9, 2014May 11, 2014 by Jesus is for the Wounded1 Comment

Here’s a brief update on my brother, Michael, and me with a prayer request:

At this moment Mike is moving from an acute, inpatient rehabilitation facility to one of the lowest-rated nursing homes in the city of Detroit. The social workers claim that of the 35 facilities they have contacted, St. Francis is the only one who would accept him. The reason? He is “Medicaid Pending” and does not have any other insurance. We are sad and concerned.

Today Mike’s rehabilitation stops until Medicaid is approved. Today Mike learns how the indigent of our society are left behind in facilities located across the street from an abandoned buildings in scary neighborhoods. Today Mike decides whether or not he is a FIGHTER. I only got to talk to him briefly before the transport vehicle came to wheel him out of his private room and begin the next leg of his recovery journey. He has made tremendous gains in cognition, swallowing, self care, transferring from one seat to another, and even walking. Mike has had close monitoring of his medical condition, medications, and test results. The plan to address a complex cyst on a kidney remains unclear as he moves away from his rehabilitation and medical specialists. None of them go to the new facility. It is unlikely that he will receive any rehabilitation therapies from this point forward until his Medicaid is approved. We are sad and concerned.

We are hoping that this transfer is a move sideways and not the beginning of a downward slide. At this point I do not believe that he knows that he will be receiving fewer services. He is concerned about the facility location and the comfort level of his fiancé visiting him in an unsafe neighborhood. Gratefully our cousin, Lisa, is an optometrist who sees patients there every 6 weeks. She has known the staff there for 10 years. We are hoping that this helps place Mike in a favorable light. Lisa has also offered to accompany Mike’s fiancé, also named Lisa, on her first visit to the new place. I am exceedingly grateful for this. I wish I could be there too. I cannot go at this time.

I had my own questionable “move” this past weekend. Difficulty breathing and bizarre, violent seizure attack episodes landed me in the emergency room. I received “treatment” and returned home; the last three days have been marginal yet better in some ways. I saw my family practice physician yesterday and was able to put together a few plans to tighten up my treatment plan. Unfortunately I had to escape outside for fresh air THREE TIMES due to the mold aerosols in his water-damaged office building! Did I mention that I was already wearing a charcoal mask? Geez. I was re-reading the Clinical Summary this morning from my visit and collapsed at the kitchen table into a pile of seizure-like tics. Perhaps the aerosols followed me home on the porous copy paper? Who knows. My gracious husband has seen me through it all, threw out the papers this morning and opened the bay windows to help me revive. Thank you my beloved Steve!

Sometimes it looks like things are going downhill when actually we have just stepped a little to the side. Many hidden blessings have come from my brother’s stroke: developing a closer relationship with his fiancé, rekindling a friendship with my amazing cousin Lisa, and seeing a few family members step forth to love on my brother are wonderful. And in my own situation I now have a biotoxin illness doctor who is willing to go to bat for me when headed to the ER on a Sunday in addition to an incredible husband who is my kinsman redeemer. Steve is willing to love me, care for me, and defend my special needs when needed on my journey to wellness. He believes me that this crap-ola-ski is NOT all in my head and is helping me overcome it too. In both my brother’s and my own situation, I am seeing new expressions of love that have not been there in our lives before. Cool beans. Thank you Jesus!

Gentle Reader, would you kindly pray this scripture with me? I pray that we will lean on the Lord, trust in the Lord, and have courage to move forward when-and-as the Lord leads these next few weeks. I need to rest in the tender care of my Jesus and not get ahead of the work He is accomplishing in today. After all, I do not want to miss the richness of His tender care, His presence in each breathing moment. Such a joy it is to know that He is here carrying Mike this afternoon in that transport van. Such a joy it is to know that He is here too with me and you carrying our thoughts and prayers to our Heavenly Father for His wise care according to His Divine plan for our lives. Perhaps sideways is a good place to be right now.

Want some bulletproof coffee? Let’s go out on the patio and sit for awhile. The sun is shining this afternoon and the narcissus, tulips, hyacinths, and buttercups are blooming!