Tag: hope

When the time is right

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One of the hardest parts about chronic illness for me (longer-duration illness, not permanent, hopefully!) is the change in my relationships.  I’ve written previously about the loss of casual friendships, the ones based upon common interests or gathering places.  Today I’m talking about the one between a husband and wife.

Steve and I have been married almost 6 years.  I call him my “intended beloved” since I believe the Lord has blessed me with an amazing man of God as my life partner.  We came together in our late 40’s, having learned much about life, people, and the Lord’s enduring grace in the years before we met.  We’d both lost our youngest sibling and the last of our grandparents within the past 10 years, shared both similar and completely opposite interests, had to relocate due to divorce, seen plenty of changes in the world around us, and came to a saving faith in Jesus Christ as adults.  Still when we got together we needed to work on a few things as a couple.  I believe these things have become our strengths and bonded us together for life.  Yes!

Steve and I share the “love language” of caring touch.  (For more on the 5 love languages, see the work of Gary Chapman.)  Therein the challenge of late lies.  The most noxious symptom of Chronic Inflammatory Response Syndrome for me is seizure-like episodes, 3-4 times per day.  Most any sensory stimuli can make a seizure attack worse or even trigger one if it is intense enough.  An episode can become  worse after it starts if Steve or anyone touches me.  So imagine a loving spouse attempting to comfort his or her beloved at a time of severe illness, reaching out and discovering that the gesture actually makes the person worse!  And if this happens over an over again, despite the caution, precautions taken to be gentle or vary the type of comfort, the spouse can become discouraged.  In our marriage, we have decided to work with the symptomatology and find a firm touch or closeness by proximity that sort of worked for me.  Thankfully, Steve did not stop trying altogether.  I understand that could have happened.

After all, the worst seizure attacks and convulsions happen late at night.  Steve often needs to go to bed to get up for work or another commitment the next morning so he simply cannot stay up with me night after night.  Our physical intimacy suffers.  Oh and if the attack isn’t so bad and we attempt marital relations, it’s a crap shoot whether or not the noxious symptoms start again.  Can you imagine turning something intended to be precious into something so ugly?  We often don’t even “go there” if I’m feeling sick or I’m in “pre-tic mode.”  The heartache of frustrating my spouse isn’t worth the Russian roulette we must play to see if things are going to work out o.k.  Stopping a tender moment also wrecks my thought process; it wrecks “the mood” for me.  Steve just says, unbelievably, that he doesn’t mind or that we had a time of closeness anyways.  Where do they make guys like him anyways?  Certainly I had not seen any in my past . . .

And this is where I must trust the Lord to sustain me, to sustain Steve-and-me through this season of our relationship.  I am incredibly blessed to be married to a man who loves me truly, “in sickness and in health.”  I did not experience this when I was married before as a young woman.  The Lord allowed certain health issues at that time to challenge us, test us, deepen our faith and we both failed to lean on His leading to overcome the trials.  In the end, my former spouse turned to another woman for solace and physical intimacy.  She was an unlikely comfort:  wealthy, mother of 6 children, and spouse of a man about to be imprisoned for embezzlement.  Craig left anyways.  And what that left me was a fear of relational intimacy or at least of trusting another man to endure the inevitable trials of life.

In the time that followed as a single woman, I turned to my Heavenly Husband for comfort, protection, provision.  He was my constant companion and much healing occurred.  It wasn’t until a time of serious illness struck 2 years ago and 4 years into my marriage to Steve that I realized a little more recovery was needed.  Steve’s steadfastness strengthened by his true relationship with the Lord has never waivered.  Never!  I am humbled and grateful.  I often see in Steve:  “Jesus with skin on.”  Steve has been wounded by his past and an ex-wife who disrespected him terribly.  Regardless, he has rarely brought any vulnerability from that experience to our marriage.  He, too, has allowed the Lord to “restore the years the locusts have eaten” (Joel 2:25), rising up to become the spiritual leader God intended.  So glad he’s tall too.  I love looking up to my Stevers.

When the time is right, when we have submitted ourselves to the refining fire that can be the trials of life, when we are faithful to the calling the Lord lays before us, we too may be rewarded with blessings beyond belief.  Those blessings may not be what many think of as gifts or rewards.  For me and my beloved, those good things are the ability to overcome the wretched things of life in a way that actually deepens our love relationship together as well as our walk with the Lord.  My hope in writing this is that you are also seeking the One who knows your pain and loves you just as you are:  the person of Jesus Christ.  (Psalm 41:1-3)  He may indeed bring you an angel to minister to your needs, a “Jesus with skin on.”  He may bring you to the foot of His throne of grace a few times in desperation, alone.  I know that He will not frustrate you beyond what you can handle, however, and will fill your heart with unspeakable joy someday.  (Romans 5:3-5)

I am grateful to see the latter despite wretched illness.  I pray that you too, Gentle Reader, will be able to see all this and more when the time in your life is right.  (Ecclesiastes 3)  The sorrow will not be wasted, of that I am sure if we but keep our eyes fixed on the face of Christ.  We may even get a sweet snuggle with someone special too!

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Addendum:  A new medication is bringing new hope.  I’m down to about 1 attack per day and they are less intense.  We are holding onto hope as this journey of illness appears to be changing.  Praise the Lord!!!!

Progress not perfection: it’s all in the details

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One of the slogans of the 12-step program is the title of my blog today.  Progress not perfection is my sentiment as I sit on the precipice of either potential progress or doom.  Or maybe it will be that it was doom and is now on its way to progress?  This is a mini treatment update.Progress Not Perfection

First, the potential doom:  I am reacting to most foods, supplements, meds., and treatments in a noxious manner lately.  Then, out of the blue I took a 1/4 scoop of sugar laden cholestyramine (CSM) to attempt to counteract the convulsions that came with 1/2 cup of homemade, oven roasted sweet potato fries.  I had added coconut oil and a clean protein to my quick lunch to balance any extra carbohydrates from the sweet potatoes.  Not sure if it was the carbs or some latent mold in the potatoes but I was down for the count, so to speak, within minutes.  I had a more delayed reaction to them and a couple of other things consumed together yesterday so I wasn’t that concerned.  Mistake.

So I cancelled my 2:00 p.m. IV magnesium treatment; I could not drive myself there.  I figured that I might as well get the CSM treatment over as it causes seizure attacks anyways, even with a 1/4 scoop loading dose of 1 gram.  And to my surprise, the attacks stopped!  I was still pretty wiped out though.  Perhaps there was a war going on inside my central nervous system and the victor was not yet declared.  So all I could do was veg out on the computer for a few more hours.  It sure beat the alternative of lying in bed shaking some more.  Maybe I should have tried to add to my 4 1/2 hours of sleep last night?  Oh well.  Decisions don’t come easy or get made well in this type of mental state!

Second, the progress:  my tolerance for CSM might be improving.  If it can stop the progression of a reaction then maybe I can take it without a reaction by itself.  I think I’ll give myself a day to recover then try to increase it to 2 doses tomorrow.  Lord willing, I may be onto something good!  And if that good lasts for more than 3 doses, well then we might actually have something really good.

CSM is a resin typically administered to lower cholesterol.  Persons with Lyme and mold illness use it in Dr. Shoemaker’s protocol to bind with mycotoxins that have a neurotoxin effect during treatment.  CSM removes the bad guys from the body (according to clinical research); there are some gastric side effects.  I was unable to tolerate it earlier this year during the stress of mold remediation of our home and had to discontinue even a low dose.

It’s dispensed as a very grainy powder with either massive amounts of sucrose or aspartame to cover the taste.  After calling 6 pharmacies and 3 drug companies last week (including being forwarded to an “off shore medical center” in India for one of them!) I hit a dead end trying to locate CSM without sweeteners.  Then a call to my favorite local compounding pharmacist revealed that the powder is indeed available but at incredible expense.  He would investigate further and get back to me.  In the meantime, the Massachusetts compounding pharmacy from which I get my VIP (vasoactive intestinal peptide) package arrived with a brochure that included CSM without sweeteners!  Their price is the same as what I pay for VIP.  It’s expensive.  Turns out that my local pharmacy cannot even purchase it for the price that the MA pharmacy would charge me.  Well then.  A plan is coming together.

Unfortunately my LLMD appointment was cancelled Friday.  I spoke with desperation to the not-so-friendly, overworked receptionist who notified me of the cancellation, pleading for an order for sweetener-free CSM powder from the MA pharmacy.  Have you ever given detailed information to someone on the phone then wondered if they were just pacing themselves on the other end of the line and not really taking any notes?  I had that feeling.  I had no idea if anything would happen until I could confirm everything with the phone nurse next week.  The weekend ended up with many wretched moments as I experimented with the sucrose-laden CSM.  Sugar feeds Lyme, Candida, and fungal/mold infections.  Not good.

So therein lies my caution with advancing CSM, my new wonder drug, until I have the sugar-free and aspartame-free version.  If I’m having mysterious trouble with sweet potato fries oven roasted in 3 types of organic cooking oil to offset the glycemic impact, then I ain’t gonna mess much with the sugary version.  Too bad that I get headaches with aspartame.  Or maybe it’s a good thing.  Aspartame can break down into formaldehyde and is associated with all kinds of health issues.  You know what they preserve dead corpses with right?  I’ll never forget the smell of formaldehyde from gross anatomy dissection lab in college . . .

Oops.  I’m on a bunny trail.  Well thank you for reading this rant and helping me to sort out a few things.  Since the recent expert evaluation of seizures at a major university hospital didn’t yield any new information, I’ve been wondering what the heck to do next.  A person with hours of multiple wretched events per day keeps looking for answers you know, with the brain cells that are left firing in the correct sequence.   The Lord has definitely powered the sustaining grace of this renewed  pursuit of CSM and any mental ability to write about it.

Oh, and some other progress:  just finished the final edits of my upcoming eBook Hope Beyond Lyme:  The First Year.  I’ll do a final read-through and copyright check then publish it online.  Stay tuned for some more good news!

Yeah Lord for anything good that happens from here!  Your strength is shining through once again.  This vessel is broken, cold, and quite spacey.  Help me finish the race you have set before me and publish this work you have created in me.  In Jesus’ name, amen.

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UPDATE:  The CSM is on it’s way across country from Massachusetts to Indiana!

There’s dirt under my fingernails!

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No matter what happens from here, I must rejoice:  there’s dirt under my fingernails!

Yes, in the middle of this wretched illness, with many projects on hold, the sun shone and there was a break in the noxious symptoms plaguing my life.  So what did I do?  I got outside and played in the dirt, that’s what!dirt under fingernails

Harvested the overgrown swiss chard.

Planted the tomato salsa coneflower I bought from a local nursery last week.

Watered!

Cut back a few perennials that the dead flowerheads were spreading their seeds where I did not want them to go.

Cleaned up the dead stalks of the daylilies in the front beds.

Harvested a few radishes and 3 monster carrots.

Tidied up a bit here and there.

Started the conversion of a raised bed into a massive mulch pile for the winter.

Finally trimmed a dead branch from one of the three variegated dogwood bushes.

Cleaned up the grass overgrowth from one of the two trees leftover from my Spring clean-up.  Mulched.

Played with my garden dog, very happy to be out and about with me in the yard.  Oh pups.  You da best.

Now why would I detail every aspect of these precious 2 1/2 hours?  Because I would rather work in my garden than do just about anything.  It grieved me terribly to waste a beautiful afternoon on Tuesday when I was a few minutes from going outside and my symptoms tanked instead.  The ordeal ended Wednesday morning.  And so my frustration has continued for two years, with what has become the “endurance race” of recovery from Lyme disease and mold illness.  The best coping strategy is to make no plans, hope for a little something, and rejoice when at least I get some decent sleep no matter what time of day it comes.

Then when you can go out and get some dirt under your fingernails, TELL THE WORLD!!!  Oh and water soaked my right gym shoe too.  And my knee pads (essential over age 50 you know) are encrusted with mud.  Ain’t it great?

Hang in there, Gentle Readers.  Sometimes something good happens when you least expect it.  :J

Sometimes the night just passes unnoticed

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SLEEPING_GIRL_TS4023-550x579Psalm 121

I will lift up my eyes to the hills— From whence comes my help? 2 My help comes from the Lord, Who made heaven and earth.

3 He will not allow your foot to be moved; He who keeps you will not slumber. 4 Behold, He who keeps Israel Shall neither slumber nor sleep.

5 The Lord is your keeper; The Lord is your shade at your right hand. 6 The sun shall not strike you by day, Nor the moon by night.

7 The Lord shall preserve you from all evil; He shall preserve your soul. 8 The Lord shall preserve your going out and your coming in From this time forth, and even forevermore.

I’ve heard this called the bedtime psalm.  Sure beats the one I grew up with:

Now I lay me down to sleep

I pray the Lord my soul to keep.

If I die before I wake,

I pray the Lord my soul to take.

The childhood prayer above offers me no comfort during a night like last night.  If the worst outcome of 15 or so total hours of noxious symptoms last evening and overnight were to repeat itself, I would need the truth of God’s word on my mind and in my heart.  Some wishful rhyme uttered as a “prayer” has only the fleeting power of a feel-good sentiment.  It wouldn’t refresh my husband enough either to feed me or carry me to the bathroom again.  Only God’s word has the power to transform our fragile lives, and I know He will transform mine someday.  I know he sustains my beloved with supernatural strength.  Only God’s word provides sustaining grace for all who suffer, for when sleep will not come.

This afternoon I must somehow get to 2 medical appointments despite the lethargy, pain, sweats, stiffness, low grade neck headache, ringing in my ears, and so on.

Oh Lord, I do hope these trials end soon!  Maybe I can nap later this afternoon?  Yawn.

He holds me close

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kid having seizure27 My sheep listen to my voice; I know them, and they follow me. 28 I give them eternal life, and they shall never perish; no one will snatch them out of my hand. 29 My Father, who has given them to me, is greater than all; no one can snatch them out of my Father’s hand. 30 I and the Father are one.”  (John 10)

So glad to have the love and care of the Lord this night.

So comforted to have the love and care of my beloved husband each day, each night.

So grateful to have the love and care of some dear friends and a few family members.

So humbled to have help here and there to carry me and my husband on this difficult path of recovery from a serious illness.  We have health insurance, a warm home, nutritious food, and reliable transportation.  We are blessed indeed.

So hopeful for some new treatment directions and a special medical appointment tomorrow; maybe my suffering will diminish soon, perhaps resolve one day?

So weak, sore, broken, pained, sad at times too.  It’s all in the mix.

One thing is for sure as spoken by Jesus:  he has me firmly in his grasp, regardless of how I feel, what I fear, my past experience, and so on.  He is holding me close.  And when I’m next to tears that is a great comfort indeed.

Ever need a hug like that?  It’s there for you too Gentle Reader.  In the great mystery of His infinite love, the Lord holds near to His heart all those that believe in Him.  In these crazy times I can think of no better place to be.  Think about it, won’t you?

John 10 sheep