Tag: mold illness

Sometimes you spin your wheels

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“It was the best of times, it was the worst of times . . .”  Charles Dickens

I have so much for which to be grateful this day.  Despite the absolute insanity of my days, I can still rise above the mud and muck and see the sun shine on a few blessings.  I get to see that the Lord goes before me, ordering my steps even before I realize that I am not stumbling but walking humbly in His grace.  I am so glad that He is gentle with me.  After a rough night there is usually a great nap within a day.  After much confusion, the Lord uses a new friend to point me in the right direction.  After a very long wait to see a medical professional, there is a sweet phone call to another dear friend while waiting in the lobby.  After contracting a serious illness, there are new sojourners to acknowledge me, walk with me, light the way to hope.  And after so much unrest there are peaceful moments that transcend my understanding!

Nothing is truly wasted in God’s economy if we but keep our eyes focused on Him.  We must press on.

If your situation stinks, get your mind out of the muck and consider coming to Jesus.  Get into His Word, the Bible, and you will find what you need.  He is waiting.  You can have an eternal focus that will transcend this day.  Seriously.  Psalm 23 lifts me up every time.

Nissan Frontier on a bad day!
Some serious mud on a bad day!

 

Now that's better!
Now that’s better!

The German Shepherd Gets It

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All we have is this moment in time.  I mean who can make sure a birthday cake comes out right tomorrow when it is today?  Who can redo a soggy flower bed from last year on a wintery day?  The best strategy is to stay in the moment where we can do our best to be mindful of the Lord and if He leads, do our best work, best thinking, best living.

34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.  Matthew 6:34

These themes were revealed today by our German shepherd dog, Elle.  I decided to push the limit of my activity level and do a few things outdoors in the heat.  After making it through my husband’s kayak race at the Fort Wayne Riverfest, I was very warm, straining to function and all-around uncomfortable.  Nonetheless, since I was still covered with sunscreen and bug spray so when I got home, I figured this would be a good time to replant 2 pots, feed our acid-loving plants in the patio garden, and so on before coming into the house to take a shower.  Elle was outside with me doing the things she likes to do too:  sniff, sniff, sniff!  Not 15 minutes had gone by before our generally obedient pup was gone from my watchful eye.  “Whhhhhhit,” I called.  No dog.  She usually comes racing around the house back to me when I whistle for her.  Hmmmm.

But of course!  It’s very humid and above 80 degrees F outside today.  The clouds are long gone and she was panting rather hard not long after joining me in the yard.  Guess the sip of water from the garden hose wasn’t enough for her.  Elle had taken herself for a swim!  She loves to “play hippo” as my husband calls it, in the neighborhood pond behind our property.  She stays in the water long enough to cool her belly then wanders out into the public area around the pond to sniff out some rabbit tracks and inspect the perimeter of our neighbor’s backyard.  I whistled a little louder.  Yeah, a wet dog came a running!

Julie Spring Flowers 015

The German shepherd gets it.  She got hot.  She wanted relief.  She went for a swim in the pond and came back to her usual activities thereafter.  Oh to be able to think like a dog sometimes!  Elle keeps it simple.  Not me.  I continued to pot up some vinca flowers despite the sweat running into my eyes causing tremendous burning, first the right eye and then the left.  “I can’t stop,” I tell myself, “because I would have to go into the house to wash my hands then go to the bathroom and get distracted by 5 other things and never get back outside to finish if I do.”  Geez.  In the 12-Step programs they used to call that “stinking thinking.”  To do first that which is most important is another slogan from my ACOA days.  Maybe I don’t trust myself when I’m feeling crummy?  Guess I haven’t learned to apply all of the slogans yet.  Guess I’m still struggling with a pared down version of Matthew 6:34 as well.  Forget worrying about tomorrow, I’m stressed about the next moment!

The significance of this behavior goes beyond the sweat in my eyes.  I am also dealing with and increase in noxious symptoms from a short course of antibiotics for an infection.  Add to that the aftermath of two terrible episodes of seizure attacks before and after an MRI yesterday, broken sleep, heat intolerance requiring me to leave the races before some additional events, and low blood sugar,  it seems like I should be inside the house taking care of myself anyways.  Sigh.  But I want to work in my garden!

I want to do it all and it hurts me sometimes when I do.  In doing so, I get in my own way of feeling good.  So I’m going to be gentle with myself as I work on this tendency and apply some Biblical truth that will last, will transform me.  Let’s see, at the time I am writing this the internet connection went down.  I copied the draft into a word document so I wouldn’t lose my precious thoughts.  This means that I can’t search some fancy Bible verse website for just the right verse to get me moving in the right direction.  It also means that I must go and get out the Big Book itself.  Hmmmmm again.  I haven’t had my quiet time with the Lord yet today.  Perhaps you can guess, gentle reader, what needs to happen next?

Seeya later.  It’s time my moment counts for Him and not me.  We’ll talk later.

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Addendum:  As soon as I turned off the computer the Holy Spirit gave me the verse before the one above.  Thank you Lord

33 But seek first his kingdom and his righteousness, and all these things will be given to you as well.  Matthew 6:33

Treatment Scorecard

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In January of 2012 I was diagnosed with Lyme Disease by a brilliant Lyme Literate Medical Doctor (LLMD).  I had never fully recovered from an episode of viral hepatitis after kayaking in a local reservoir in October of 2011 and my LLMD went looking for answers.  The diagnosis of Lyme Disease was made.  A year later, additional testing revealed mold illness and we remediated our home from January to March of this year.  During the interim, I’ve been treating for Lyme Disease initially with antibiotics and subsequently with a Rife machine and boatloads of pharmaceutical grade supplements.  Recently Candida was added to the diagnostic profile and I further restricted my diet, started on a supplement specific for Candida.  Now for the heavy hitters from recent blogs:

Let’s see, about 2 months ago I was all excited about vasoactive intestinal peptide or VIP.  It’s used to treat Chronic Inflammatory Response Syndrome, a complication of mold illness which presents a significant neurotoxin challenge for recovery from Lyme Disease.  Basically this means that I react to most noxious sensory stimuli very negatively.

Update:  I’m still at one nasal spray per day and am unable to increase it without tremendous fatigue.  The seizure attacks (which began in March of 2012) are of a shorter duration when present and present one less time per day.

Shortly after starting VIP, my LLMD prescribed Losartan, a blood pressure medication.  Losartan lowers TGF beta-1, a hormone that can cause chest compression-type symptoms, another complication of mold illness.  The symptoms have been a daily issue since March, interfering with sleep and causing my breathing to stop at least once per day temporarily during seizure attacks.  Frightful indeed.  My LLMD tested me for asthma and lung disease; he prescribed Albuterol, an inhaled medication.  Geez!  I’ve used the inhaler once.

Update:  It’s now a month later and gratefully the chest compression, pain, and restricted breathing episodes are relieved at least 65%.    The addition of this second medication may be why I am not able to titrate up the VIP yet.  In Dr. Shoemaker’s protocol for mold illness (reference:  www.survivingmold.com) the TGF beta-1 level should be treated first.

The most recent setback was a flare up of a persistent urinary tract infection and possible interstitial cystitis.  By the grace of God, this time a specific bacterium was found in the culture:  citrobacter feundii.  This bug is common in those who are immunosuppressed.  Yeah that’s me.  With a CD-57 of 17 (supposed to be above 160) denoting severe Lyme Disease, it makes sense.  I don’t like it though!  The treatment is typically from a class of antibiotics that I have not been able to tolerate.  In March this meant three straight days of intermittent seizure attacks.  No thanks.  I am not going there again!  Turns out that the LLMD prescribed one of those same types of drugs and the pharmacy did not catch it either.  In the back page of a computer file was a notation that got missed . . . By the grace of God I caught it and got my 40 cents back as I returned the bad boys.

Update:  My LLMD prescribes Doxycycline.  Now those of you familiar with Lyme Disease know that “Doxy” is the drug used for treatment when people first get bitten by a tick.  Sometimes it’s used at the beginning of a chronic Lyme antibiotic protocol or pulsed in rotation with other medicines.  I had never used Doxy.  Whoa.  I was scared!  What kind of herxheimer reaction would follow?  (Herxing is like a detox reaction when on a cleanse protocol.)  I’ve read that Doxy can trigger every kind of symptom under the sun.  I’ve also read that it’s going for $400 or more around the country.  At the time of this writing I am 5 1/2 hours after the first dose and I am feeling better.  The UTI symptoms are subsiding already.  The cost was cheap at my local pharmacy.  Whew!  One dose down and nineteen to go!

The last update is a minor one:  my response to noxious mosquito bites.  I seem to be a magnet for mosquitos, day and night, getting bitten through my clothing and in any spot not doused in DEET-laden bug spray!  Fifteen mosquito bites this past Saturday set off 36 hours of seizure attacks and sickness including Father’s Day.  Bad timing.  Oh well.  Nothing would soothe the inflamed bites either.

Update:  Monday my LLMD office recommended some Rife programs for Lyme and a specific co-infection called Bartonella.  Within a few minutes of running just 90 seconds of each program, the itching subsided.  Praise the Lord!  They returned later but were diminished overall and this occurred in less time than I had noted using various over-the-counter remedies/baking soda.  Yeah God.

I think I’m only going to go outside during the daytime when it’s cooler and I’m covered.  Besides, photosensitivity is a severe side effect of Doxycycline so I better stay out of the sun for the next 10 days!

Sure has been a crazy Spring and Summer so far.  Well actually the whole year has been insane!  I gotta tell ya that I am actually very encouraged this day so I hope that you will be as well.  Seems like the worst setbacks have always given way to the best insights and new directions.  I haven’t a clue why the Lord has allowed this crazy journey in my life.  My husband is a saint!  I do know that the breaks in the illness are very precious times between me and Steve.  I do know that I find myself grateful for smaller and smaller miracles that I might have missed if my life was “normal.”  I have already seen that my experience can benefit others as I have benefitted from theirs too.  I love to blog and make jewelry and had never done either before.  I have finally made some close friends here in Indiana.  And in the end, it is clearer than ever before that the promises of the Lord Jesus Christ bring more hope than any temporal experience in our days.   (Reference:  Psalm33)

Sure, Lyme Disease and all the rest are a drag.  So is the State of the US government!  We are all stewards of our experiences (good and bad), our time, our resources, our talents, our opportunities.  We can waste them, idolize them, or let them distract us from the eternal things that really give meaning to life.  “Whatcha gonna do with it?” is the bigger question really.  Well?

Yup, Hanging in There

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Leaning on Proverbs 3:5-6 today as I face the reality that is mine.  Then again, only the Lord knows the path, the bunny trails, the destination and the ice cream stops along the way.  Ice cream.  Hummmm.  I sure hope there’s ice cream in my future!

LymeTimeline

Proverbs 3:5-6

5 Trust in the Lord with all your heart     and lean not on your own understanding; 6 in all your ways submit to him,     and he will make your paths straight.  (NIV)

Giving up one thing for another

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7157_10151668652045255_1072850858_nSo glad I could enjoy my husband’s kayak race today.  His daughter, Christina, and I cheered him on from the shore of the ol’ St. Joe River, taking pictures and listening to paddling stories from the timekeepers (Roger and Martha).  Seems simple enough:  a typical Saturday outing for our household perhaps.

Er, no.  THIS IS HUGE!!!  When you wake up with a crushing feeling in your chest that you’ve had for days and tic attacks after a night of broken sleep due to both, it’s a blessing from the Lord to be able to go anywhere!  And seeing my beloved River Bear in his element is a real treat for me.  My husband is so cool.  And I got even got to yell at the top of my achy lungs, “Gooooooooo Steeeeeeeeeeeeeve!”  He won today in the USCA K1 Unlimited class as well as had the fastest overall time.  The day was warm and sunny.  All was good.

The afternoon didn’t go so well as I tried to rest with hopes of helping at the Purdue Extension Office plant sale this evening.  Oh well.  Cancelled that.  Sometimes you give up one thing for another.  Life is like that sometimes.

Praise be to God the Father of our Lord Jesus Christ!  In His great mercy He has given us new birth into a living hope through the resurrection of Jesus Christ from the dead and into an inheritance that can never fade.  This inheritance is kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. 1 Peter 4:24-25

Yes, we endure hardships in our lives.  Yet this is not all there is and that can be a tremendous relief and source of hope.  A breath of fresh air.  In this life we can choose give our lives to that which fails us and fades or trust the One who is worthy and promises us life everlasting, riches beyond our wildest imagination.  I have placed my trust in more than I can see, feel, hear, taste, touch in this life:  God almighty, maker of heaven and earth through a personal relationship with His son, Jesus Christ.  So if I get a piece of happiness today it is a sweet blessing; thank you Lord.  But I will never give up a piece of happiness for true joy that comes through faith in Jesus Christ.  He transcends our world and our lives for the prize in the ultimate race:  an inheritance that can never fade with Him eternally in heaven.  Today and tomorrow I say,  “Go Jesus!”

And with odds like this, maybe you will say, “go Jesus” too?