Tag: fibromyalgia

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!!!!

Brief treatment update

Published on by Jesus is for the Wounded3 Comments

Here’s a brief update in my continuing adventure of recovery from Lyme, fibro, mold, and whatever:

Saw a new chiropractor for 7 visits and while the treatment got rid of my headaches and increased my overall ability to move, I had seizure attacks every visit!  I finally got word this past week that Dr. N did talk to my LLMD as I had requested.  Still  Dr. N referred me to another chiropractor for more “comprehensive” care.  That did not work out so well.  (See posting from Tuesday!)  I’ll probably go back to Dr. N after a few more magnesium treatments and after I’m able to drive 30 minutes to his office several times per week.

Began treatments of IV magnesium on Friday the 13th; spent the evening with seizure attacks/convulsions followed by 7 hours of tic/seizure attacks into the morning.  Yipes!  Had a better day by the time Sunday came, albeit weak from the previous 2 days.  (Only had one episode that night, on the way home from our Sunday church home group.)  Getting the IVs started has become an arduous, painful process with a minimum of 2 wretched sticks before the RNs find a suitable vein.  What follows on the day of treatment or the day after appears to be a herx reaction or healing crisis of sorts.  This treatment is scheduled to continue for a month; supplemental magnesium is a promising treatment for me despite the difficulties.  I’m praying that the Lord sustains me and that my tender vessels endure it!   Tomorrow I’m going to let them give me the PRN narcotic pain med. with the treatment.  I just need a break from these awful neck headaches that come from the wrenching head-n-neck motion during attacks.  Gratefully, there is improvement with one fewer attack per day, barely a few tics last night and significantly less chest compression pain!  Yes!

Rife or Beam Ray treatments are on hold.  My tolerance for this sound and light wavelength technology was decreasing so it’s on hold for now.

Waiting in the wings is a new round of low dose antibiotics after some lab testing pending soon to rule out a new UTI.  Got lots of itchy, burning, ringing, stinging, stabbing, aching symptoms all over right now possibly flared up by the stress of the IV treatments.  “Rest” is my focus at the moment in my weakened state.  I do make dinner most nights, however!

A neurology appointment is now scheduled for October 1st at the Indiana University Medical Center in Indianapolis.  IU is the go-to place for persons in the Fort Wayne area needing a special consultation.  So to Indy we will go at 5 in the morning.  Hey, if my beloved can take off at 6 in the morning for a kayak race, 5 should be a piece of cake, right?  Gooooo Steeeeeeve!  As for me, well I might still be up from the night before!

Steve and I are grateful for some help with a meal once per week from the lovely ladies at our church.  It seems like the night they bring dinner something bad happens later on, like an emergency room visit 2 1/2 weeks ago.  Their generosity is a real blessing and it sure breaks up the isolation for me when they stop by!

Well that’s the main stuff or at least the news for the masses.  If you wouldn’t mind praying for us that would be great.  My heart is tender for Steve right now because we had to cancel our trip to see his grandson for Jackson Rees’s first birthday and to see some dear friends in South Carolina.  I really need Steve in the evenings when the attacks and physical episodes of collapse are usually quite nasty.  This would be too much for a female friend to handle if a gal was staying with me at night and Steve went out of town by himself.

Steve has travelled alone 3 times since this process of illness began for me nearly 2 years ago.  We have cancelled a trip before but rarely decline local invitations.  Steve just goes to them without me and that is cool with me.  Travelling to Arkansas this past summer was very hard on me despite a couple of nice visits during the 5-day trip.  So to cancel the South Carolina/North Carolina trip is just what we have to do this time, although it’s a bummer.  JR is going to get a big box in the mail real soon!  Anyways, if you wouldn’t mind praying a prayer of sustaining grace (for me) and strength (for Steve) that would be super.  The Lord has helped us and even blessed us.  We are trusting Him and hopeful for all He has in store for us.  (Proverbs 3:5-6)

Take care all,

Just JulieProverbs 3.5-6

When you are no longer brave

Published on by Jesus is for the Wounded2 Comments

If I were left to my own resources this day, I would not make it.  Thankfully, there is more.

And the only resource worth pursuing is the One that is perfect, all-knowing, all-powerful, ever-present, love incarnate, eternal, and dwelling in my broken heart.

If I were to merely go with what feels right or good, I probably would not get well.  Thankfully, there is more.

And the only emotion worth feeling is that of humility as I lay down my metaphorical sword and let the One who weeps for me wail His own mighty hand of power.

If I were to measure my patience, my progress by the time already invested in recovery or making things right, I could not find a tool with a good enough warranty to last long enough to even bother.  Thankfully, there is more.

And the only period worth measuring is the one I must accept:  the time that is indefinite, outside of a calendar or watch and yet fully calibrated and infinitely accurate in the hands of the Creator of time itself.

So if I were to admit that in the convulsive state of my existence that I can no longer go on I must proclaim on faith that there is more out there somewhere.

And my only hope lies in the protective wings of my Lord and Savior, the Alpha and the Omega, my Immanuel and King.  So Here I am Lord .  .  .

A hymn:  Here I am Lord.

 

Start with what you can eat . . .

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Special diets can be maddening, time consuming, expensive and an all-around bite in the shorts (if you know what I mean)!  Instead of stressing, I apply a few basic food prep principles, start with what I can eat, and whip something up from there.  After a few weird entrees and sauces, things will start to taste more palatable and even kind of good as you gain confidence.  Who needs recipes anyways?

My husband went shopping at a big box store this evening for basic groceries including grated cheese, fruit, a few veggies, and the only meat I’ll buy there for a rare convenience:  canned chicken.  Since I haven’t been able to shop very much lately, preparing dinner tonight required some very special creativity!  Gratefully there were onions and cabbage from our garden in the frig, a loaf of multi-grain bread in the freezer for hubby, some sliced almonds in the pantry and a few other staples here or there.  Now to make a gluten/dairy/sugar free meal plus a full flavor meal for the two of us . . .

His and Hers Salads began with Canned Chicken!
His and Hers Salads began with Canned Chicken!

Not bad, eh?  Gratefully it was yummy!   The base started with spring greens in both bowls with oven toasted almonds (sprayed with grapeseed oil, sprinked with celtic salt and roasted about 7 minutes in the oven at 350 degrees, stirred once halfway through the baking time).  The chopped chicken salad-and-vegetable mix included all the veggies we now had in the house:  cucumber, cabbage, radishes, onion, and the canned chicken.

For Him:  I garnished the ceramic bowl and base of salad greens with sliced pears and grated cheese.  I made a 1/3 batch of homemade mayonnaise in the Vita-Mix using sunflower and olive oils instead of GMO-laden canola oil listed in the recipe.  (Yes, here’s the one exception:  ya gotta follow a recipe exactly from the Vita-Mix manual for mayo to turn out right!)  I mixed the mayo with half of the canned chicken-and-vegetable mix and dolloped it over the cheese and spring greens.  He got a topping of toasted almonds with a little extra dressing on the side, just in case.

Basic Parmesan breads:  I thawed and sliced a loaf of multi-grain bread about 3/4 inches (2 cm) thick and placed them on a cookie sheet lined with foil and brushed with melted butter.  I brushed the tops of the bread liberally with butter then sprinkled on some parmesan cheese.  (For garlic butter, sprinkle some garlic powder or chopped garlic into the cup before microwaving the butter, about 23 seconds.)  Broil on low for about 6 minutes checking it often near the 6 minute mark.  I find that the low setting allows the pan to heat up and toast the underside in addition to both melting and browning the cheese on top.

For Her:  I garnished the ceramic bowl of spring greens with a non-cheese alternative (e.g. Goya shredded mozzarella).  Next I made a dressing with almond butter, unsweetened. coconut milk, Mrs. Bragg’s Liquid Aminos and a pinch of celtic sea salt.  This requires some minimal adjustments for taste and consistency.  Then I placed the other half of the plain chopped chicken salad-and-vegetable mix on top of the remaining bowl of spring greens and poured the almond coconut dressing of it, mixing it into chopped salad slightly to coat it.  I finished it off with a topping of toasted almonds as well.

Sure, this meal took a little extra time to prepare and it was worth it.  To make it even more worthwhile, during the assembly phase of this meal and next to the ceramic salad bowls were two large plastic containers that are not pictured above.  I made duplicate salads with every ingredient listed above except the sliced pears (since they would turn brown by lunchtime tomorrow).  So we not only had a yummy dinner tonight but will look forward to a “repeat performance” for lunch tomorrow!  I usually make dinner this way:  setting out the storage containers for lunch and serving them up right alongside the dinner plates to save time the next day.  Cool beans.

That’s it!  And it’s not all bad following a protein-oil-vegetable diet, with a tiny bit of optional, extra carbs from the cheese substitute, when it tastes good too.  ‘Twas tough avoiding the cheesy breads I must confess . . .   ;J