Tag: chronic pain

No Worries Here

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In Philippians 4:6-7 Paul writes, “Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, shall guard your hearts and your minds in Christ Jesus.” Our anxiety and worry is distrust and disbelief in God, and it weakens us for His service. The Word tells us that we are to pray about the things that are troubling us, giving us anxiety, or weighing heavily on our hearts. Make these requests known to God.

“Cast all your anxiety on Him because He cares for you.” (1 Peter 5:7) This is the peace of God; knowing that He is sovereign and that He cares for us, that we have been reconciled to God because of what Jesus did on the cross, and we have the hope of heaven and enjoyment of God forever. This peace will keep our hearts and minds through Christ Jesus.

“Thou wilt keep him in perfect peace whose mind is stayed on Thee, because he trusteth in Thee.” Isaiah 26:3  (from Patrick Klein and the online newsletter of Vision Beyond Borders, June 28, 2013).

These are my hopes and prayers of today, to keep me focused on that which matters most.  The relatively little stuff of my Sunday cannot compare to the riches in heaven, the rewards of the faithful, the promise of eternity with the Lord Jesus Christ.  Translated in Julie terms:  the noxious stuff will pass.  This is but a season of trials.  And so I pray:

“I lay these at Your throne of grace my King for your care, mercy, and grace.  I trust that You see me.  I trust that You hear me.  I trust that You care for me on my bed of sickness (Psalm 41:3).  I trust that You are my strength when I am weak and will sustain me, prepare me for the tasks ahead (Psalm73:26).  I trust that you will guide my beloved husband and me in Your ways to fullness of joy (Psalm16:11).  In these promises I rest.  In Christ’s name, amen.

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?

The Laundry Still Gets Done

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Take me to the top

I don’t wanna cry no longer

Take me to the top

Can’t you see I’m getting stronger?

Take me to the top

Yes there’s room for me and others

Take me to the top

Hey that’s where we will recover!

A simple song, yes it is, written long before I knew the diagnosis of Lyme Disease and sometime after the diagnosis of fibromyalgia.  How could I have known how long this journey would last nor how rich the experience would be if I just “bothered to recover.”

Yes, doing the work of recovery from any illness, addiction, loss, or heartache is a bother!  It takes time, energy, resources, finances, and emotional strength.  When I did it all on my own with my own determination I did get somewhere for a while.  After all I was told at a very young age that I am a “very determined person.”  I’ve tapped into books, self-help resources, 12-step programs, support groups, special diets, supplements, retreats, doctors, specialists, the internet, advice from others, my own creative intuition, and so on.  Yup, I should have figured it all out by now if it were up to me.  Just gotta keep staying positive, helping others, practicing gratitude, and memorizing a ton of slogans and following helpful inspirational wisdom from others on the journey ahead of me.  Hey that’s were we will recover . . .

Well guess what?  It ain’t enough!  No amount of wishful thinking, earthly wisdom, and STUFF is enough to cure or figure out the consequences of living in a fallen world.  This world is not perfect and everything will not be revealed or resolved by the right karma, nirvana, carpe diem, keeping my chin up, and the like.  Sometimes the world simply does not make sense.  I’ve heard the trouble of this world described as the influences of three forces acting against us:  the world, the flesh, and Satan himself.  Maybe so.  Or maybe it’s a combination of them?  Perhaps you would debate me on many of these points.  That’s o.k.  I welcome it.

You will never convince me however that this world is my home and that what I see is all there is.  You will never convince me that there is no purpose to our suffering and that it will end if we just do this or that.  You will never convince me that I deserve better, am entitled to more and should just set more goals to have them.  Sometimes my best is to lay low, to settle where I am.  You will never convince me that if I don’t act now, I will  miss “the boat.”  His timing is perfect now and forever.  You will never convince me there is no God because he allowed this suffering to happen.  Sorry.  I have seen too many blessings that I would have missed or screwed up if I acted to change things in my own strength and timing.  I know better than all this and you can too when you consider inviting Jesus into your heart.

So today, despite the pain and the wretched symptoms last night, the laundry will still get done.  How is that?  It is not by my strength that I live but by He who lives within me and this includes the gumption to fold towels!  When I tanked this afternoon I chose to read The Word first and not surf the net.  Why?  Since He is my ultimate source of wisdom and peace I simply cannot waste my time or energy elsewhere.  They are too precious these days.  Then it didn’t take very many of these precious moments before my relatively small list of things to do became overwhelming.   That’s when I came before the Lord’s throne of grace and He met me there.  Looks like writing about Him was my most important task on the list.  And if I wondered why I couldn’t do something else instead (like go to work or work on my home business), I had to let it all go to the God who holds my life in the shadow of His loving arms, His loving wings.  He knows the right time for everything.  He knows why all this is allowed in my life and He will be glorified in the end.  My best is in the best of hands.

So me and my unfolded laundry are pretty stubborn this afternoon.  Have I convinced you?  I’ll get to those clean washcloths soon enough and I’ll be glad the One Who loves me and knew me before I was born got to me first today.  Forget the laundry.  Hey Elle, where’s your leash?  Remember that walk I promised you yesterday?  Bow wow.

Mulching in the Dark

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Turns out that Graber Lumber in Spencerville, Indiana has sterilized and dyed hardwood mulch.  I’d already had a headache for several hours when I decided it wouldn’t make it any worse to drive 23 minutes longer to go pick up a load.  Turns out their stuff is great!  It was so finely shredded that I lost hardly any of it on the road home.  And that’s when temptation set in . . .

I haven’t finished re-digging the borders of our garden beds yet since my health is so inconsistent these days.  My rule usually goes that I don’t purchase mulch or new plants until the Spring clean-up is completed.  Well if I kept to that condition when my health is so up and down and down, I might not get the vegetables planted until June!  So I do a little of this and a little of that depending on the energy expenditure and time required on any given day.  Or should I say, any given night?

Gardening in the twilight is a peaceful thing.  Once the smell dissipates from the DEET-laden bug spray (sorry the herbals just don’t work with me; I’m the kind of person who gets bitten through my clothing!) I move fearlessly into the night.  I can’t see the spiders so they must not be there, right?  My pant legs are tucked into my socks and my head and arms are usually covered too.  Our German Shepherd pup stands guard on bunny watch until I can re-spray the rabbit repellant on a few key perennials.  The weather is cooler plus I know my yard well enough to feel what I cannot see.  Besides, this is the time of day when I feel the best.

I did make dinner for my hubby and myself and put it in the frig for later.  I started washing our sheets again to try a new remediation technique for any lingering mold in hopes of preventing seizure attacks tonight.  The only problem is that the heat in the dryer needed to be re-set and Steve wanted to go to bed early, before the bedding was dry and available.  By the time he came to tell me about wanting to go to bed, some of the sheets were still damp and I was too dirty/mulchy to come into the house to figure out a “Plan B” for him.  I simply had to keep going outside while I could go.  Turns out he figured out an alternative sleeping solution and I continued my evening project:  mulching in the dark!

So I gave in to temptation and finished mulching the front yard at 11:30 p.m.  The lack of light didn’t bother me much and I doubt I messed it up too badly.  Somehow the smell of freshly died dark brown hardwood didn’t bother me either.  My headache got better.  I guess it was meant to be?  Yes, of course, that’s it.

There are two more flower beds and four trees that need the borders re-dug.  I’ll have to get to that soon, to get the areas mulched and my truck bed emptied before the rain storm predicted for the end of the week.  Lord willing, I just might be able to do it.  Only problem is that most of the remaining areas are beyond the reach of any outdoor light source.  I may have to bite the bullet and work during the daytime.  No problem.  Maybe I need some really dark sunglasses?  ;J