Tag: Chronic Lyme

The 5 1/2 hour window of time

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Ready to head home with the 24-foot outrigger and ama on the roof!
Ready to head home with the 24-foot outrigger and ama (float) on the roof!
So grateful to be out with my River Bear!
So grateful to be out with my River Bear!

 

We came to a clearing in things and went for it!

These pictures were taken after a wonderful evening paddling our tandem outrigger canoe (OC-2) on Sylvan Lake here in Indiana.  How wonderful to be out on the water for a second outing with Steve this year.  I am so very grateful!

Sadly the evening ended worse than the earlier part of this day.  Tic attacks had started in the car on the 45-minute ride home.  Within an hour after getting home and unpacking the car I was feeling sickly.  We ate some quick salads before I scampered off for bed, still in my paddling clothes.  Low grade seizure attacks ramped up over the next hour, escalating into one of the worse episodes I have had in a long time.  Screams of terror filled our home.  The best that I could do was hold on and focus on continuing to breathe . . .

Eventually I was able to call Steve for help getting off the damp clothing and showering.  In my stupor and neurological collapse (requiring complete assistance to transport myself to the bathroom) I figured out that I must have gotten exposed to the blue green algae we encountered in the narrower sections of the lake.  I had taken numerous precautions to limit exposure to the water.  However, some simply cannot be avoided when splashing about, paddling from an open cockpit of an OC-2.  And perhaps the slimy green pond near the port-a-potties in the parking lot were releasing aerosols that were not to my liking as well?  I didn’t touch any food or the mouth of my water bottle since we did not have hand sanitizer with us.  I guess it wasn’t enough:  I am too sensitive to any form of biotoxin to get anywhere near them in any form until things change.

Thankfully after about three hours I regained motor control of my body.  I was better able to communicate and we processed what had occurred this evening.  Steve agreed that we probably need to limit paddling together to waters treated for algae, such as the private lake of a friend’s home.  This means not being able to join the local kayaking group outings on Tuesday night for the third year in a row!  That’s a major bite in the shorts!  To get strong enough to go out with them for two years was a major accomplishment for me and lasted until I got sick October 11, 2011.  Just getting into a kayak (and now an outrigger canoe, solo and tandem) simply had never happened before I married Steve.  We have so many great memories being a part of the group in addition to his kayaking competitions.  (Goooooo Steeeeeeve!)  Sigh.  And I was really enjoying the switch from a kayak to an outrigger, sporting my carbon-fiber bent shaft paddle too.  So awesome.

Last night I watched most of the video story again of Justin and Christa Vanderham.  Christa suffered from chronic Lyme disease and mold exposure for years before finding proper treatment with antibiotics, supplements, and nutrition.  A fellow sojourner in recovery and reader of this blog graciously reminded me recently that Christa’s illness looked a lot like the videos that I have posted here and on You Tube.  Yes, both our symptoms of distress appear wretched:  intractable pain for Christa and relentless seizure attacks for me.  We both scream at times due to our agony.  In chronic Lyme and biotoxin illness it’s not the exact matrix of symptoms that is so significant as it is making sure you have the right diagnoses and treatment protocols to get well.  We don’t say that we have different illnesses because our symptoms are a little different.  We do say that we both might benefit from similar aggressive treatment protocols if reasonable test data and clinical presentation indicate Lyme or biotoxin illness.  Unfortunately for me, EVERY SINGLE TREATMENT INTERVENTION exacerbates daily seizure attack episodes that average 3-4 hours per day!  I simply cannot survive the treatment protocols of which I am aware to date.  The multiple chemical sensitivities (aka Chronic Inflammatory Response Syndrome) already leaves me largely homebound to try and prevent noxious symptoms.  Lately they are on the rise again (up to 8 hours!) regardless of where I am or what I am doing.  When I take a 5 1/2 hour window of time when the symptoms subside and test the waters, so to speak, I usually pay dreadfully for doing so.  This gal just can’t get a real break I guess.  I keep trying the wrong things.  On the surface, you could say that I am out of options . . .

Regardless, this I know:  my Jesus goes before me and knows the desires of my heart.  He knows that my heart is breaking right now to realize that I can no longer be with my dear husband 2 to 3 days per week when he pursues his sport on the water.  I learned to kayak to be with my River Bear and was delighted to discover that I enjoyed it too (at a slower pace of course!).  My Lord knows how isolated I am when I am home alone because of this illness.  He has provided the safety and security of a lovely dwelling with plenty of time with my Heavenly Husband.  He was my best buddy before I met Steve; He saw me through life changes equally as traumatic all the way to the restoration process in due time.  I’ll be hanging tough and trusting Him with this door closing on open water activities, no matter how I may feel about it.  The fact is that my Lord and Savior loves me more than I can ever know.  He wants what is best for me.  I will wait with great expectation at His throne of grace for His plan for me, whether or not a new door or window opens in due time.  If I don’t lay down my will for His will then I will denounce all that He has shown me of His love for me in the past.  I don’t want to waste all that I have learned.  During those trials is when my faith grew to be what it is today.  That is when the Holy Spirit became real to me, guiding me and comforting me always.  Nothing can take that away from me.  Nothing will.

Gentle Reader, do you know faith in God like this through His son, Jesus Christ?  Please share with me your experiences if you do.  I know it will encourage me to hear from you in addition to other Readers.  Oh and if you could say a prayer for my Stevers that would be great.  He hasn’t been getting much sleep lately.  Thanks a bunch.

Better finish that mulching project in the gardens soon.  Love to you,  Just Julie

The How Long Song

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11 With 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. 12 We 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.
3 You 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.’
5 My ears had heard of you
    but now my eyes have seen you.
6 Therefore 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!
Julie and Kinsey cruising along in the tandem outrigger canoe!

The Lab Rat’s VIP Update

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Today was the 6th dose of vasoactive intestinal peptide or VIP for short.  I’m taking it for lingering symptoms of mold illness, specifically neurotoxin complications.  Turns out that it may also help modulate my extremely elevated TGF beta-1 lab value that could be creating the chest compression symptoms I’ve been having since the end of March.   And to cover all of the possibilities, my LLMD ordered, and I completed, both a pulmonary function test this week to rule out asthma and a cardiac work-up three weeks ago to rule out a heart attack.   I guess you could say that my Doc is thorough!  He certainly is brilliant.  But you know at times, I just feel like a lab rat!

The immediate noxious after-effects of the VIP dose may be diminishing; today is day 10, dose #6.  Since we did not have time to talk about it in my medical appointment this past week, I’m on my own to titrate it properly.  So Doc Julie recommends continuing on a once per day, every other day dose at noon (to reduce the possibilities of nightmares that occurred with midnight dose #2).  It’s still early in the dosing so perhaps I’ll decide to increase it to a daily nasal spray when the subsequent nightly seizure attacks are reduced.  Did I mention that I feel like a lab rat in a lab coat?  A white coat, that is.  And no, they are not “coming to take me away to the funny farm, where life is free and wonderful all the time . . . ”  yet!

So with a little cynicism, I hereby report that I am continuing on this journey into a complicated course of treatment with prayer and caution.  Yeah, you thought I was going to write, “fear and trepidation” didn’t you?  Nope.  I’m too far gone on trusting the Lord with this to let my faith fail with some healthy skepticism that creeps in now and then.

Signing off for now,

J. Ratlabratcartoon1

You Can Laugh at Anything but not Everything

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Case Scenario #1

Husband helps his wife dispense a glass of water out of two-tiered water dispenser in the kitchen of some friends’ home during a New Year’s Day party.    Wife cautions her engineer husband to be careful as he tips the dispenser forward to get the water flowing.  Upper bottle suddenly becomes dislodged from the base, spilling 4 GALLONS OF WATER OVER THE WIFE AND THE FLOOR!!!  Mass chaos ensues as some scamper for towels for the floor then eventually for the wife.  Moments later I am outfitted in some cute-but-too-short sweats and socks while my jeans and warm fuzzy socks head to the dryer.  My shock at the incident lasts for hours afterward as I wasn’t feeling good in the first place.  Overall, I am glad we made it to the party and the hostess was very gracious.  I think we broke the water dispenser, though.

Case Scenario #2

Seizure attack episode ramps up then subsides as I decide to take my Epsom salt and baking soda hot bath today.  The soak was uneventful as I later drained the tub intending to take a shower and get going for the day — after all, it was already 2:30 in the afternoon!  For some reason I am immobilized and unable to get out of the tub for a long time.  My mind goes numb, I have trouble initiating more than one step of a task at a time, and I can’t seem to call or knock on something for help.  This is Chronic Lyme Disease and its complications.  Husband comes to my rescue and helps me get myself together with a little coaching from his occupational therapist wife on how to perform a tub transfer.  Flawless execution ensues.  More time passes before my coordinated movement returns and allows me to make my special diet/lunch at 6:00 p.m. or so.  I’m now very hungry and thirsty!  Food and drink revive me.  I think I’m moving a bit slower than normal, though.

So which one did you laugh at?  In the end, the second one was the most humorous for me.  Seriously!  The difference was the attitude of my husband.  An hour under the covers, recovering from a bath misadventure can be delightful between husband and wife no matter the details.  I guess it’s all a matter of perspective and I love it when Steve and I connect with the same perspective.    Maybe next time we will be “on the same page” so to speak when the water breaks loose.  This time, the bath water won, for sure.

(No honey, I’m menopausal not pregnant!  Gotcha!)