Tag: Chronic Inflammatory Response Syndrome

Thunder and Lightening

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“Rain, rain go away.  Come again some other day.”

The kid’s rhyme had it right for me this morning.  Oh at first the badda bing badda boom didn’t bother me as the bedroom lit up with a raging thunderstorm storm outside.  The thunder rocked the windows and I’m sure the pup in the kitchen was making her way to cower in the bathroom!  Yeah, I understand that.  It was time for me to retreat as well . . .

When I was a kid we used to say that the boom, boom, bang of a thunderstorm was the angels bowling!  We also said that the rain was the angels crying.  We Catholic kids had a lot of fairy tales we told to get us through the scary stuff.  (Smile.)  Now that I am a believer in Jesus Christ, I turn to the Bible for truth and have learned that angels are real, were created by God, and have specific tasks that they perform both here on earth and in the heavenly realm as directed by God.  Wow.  Angels have nothing to do with thunderstorms!

But thunderstorms have everything to do with my illness of late.  The tic and seizure attacks are worse when the clouds and weather systems collide out there.  I can’t control it nor stop it.  There ain’t no antidote neither.  I just hold on for the ride.  Perhaps it’s part of my sensitivity to electromagnetic frequencies these days, manifest in the computer router, various electronic treatment modalities, and extensive cell phone usage.  Sigh.  What will I be sensitive to next?  Yes, the smell of soap on my husband’s scalp last night came close . . .

And yet today I am grateful for the rain.  The grass was looking a little crispy and I hadn’t been able to water my gardens last night due to noxious symptoms.  So here I sit, earlier than I should be awake on a Saturday morning, feeling “fried” again, and wondering what to do with myself.  My husband left early to run the United States Canoe Association races at Rivergames, part of the 3 Rivers Festival in our city.  He will be racing his Mohican in the K-1 unlimited class against some stiff competition (if TED shows up today!).  I am so proud of Steve.  He held me close last night during severe seizure attacks that lasted about 1 1/2 hours.  Twas hell.  We had some tense words later about some of the difficulties managing this season of life that we are in then we each took care of various tasks before bedtime.  I’m glad to say that we “kissed and made up” too, and all is well again.  About 5 hours later, we are both up again:  Steve is off to the races and what is left of me is here with you . . .

The rain has now stopped and all I hear is the roar of an emergency vehicle’s siren in the distance.  Lord, go before them and be with those in need of your care.  As for me, I am grateful to report that I am now past the personal thunder and lightening that began this day.   For me to be of use for Your kingdom, Lord, I must rest and recover now.  Perhaps I can join my beloved later for the crazy raft races that will follow the USCA races at the Festival.  Yeah, a good laugh will be good medicine.

Looking forward to loving a rainy night one of these ‘ol days . . . Eddie Rabbit  got it right in his song decades ago . . .  Click on the link and enjoy!

“You can’t handle the truth!”

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Remember this line from the movie, “A Few Good Men?”   Actor Tom Cruise is a military attorney questioning Jack Nicholson’s character, a high-ranking Army officer.  Tom presses Jack to determine if he ordered some soldiers to haze a homosexual soldier in the name of honor, code, saving lives, and so on.  The men were shouting at each other as Jack blurts out that he did in fact order the “Code” that resulted in the death of the hazed soldier.  Jack is escorted out of the courtroom shortly thereafter, sure to face his own court Marshall.  The soldiers who carried out the order were then dishonorably discharged from the Army.  The moviegoer could finally breathe as the scene came to a close.

Hmmmmm.  The intensity of emotion needed to find and face the shocking truth in my life is like that scene in my mind right now.  The truth is that I can no longer hide the noxious tic and seizure attacks that can be complications of neuro-lyme disease, Chronic Inflammatory Response Syndrome, or chronic lyme disease.  For me these are occurring several times per day or night and these times are not limited to medical appointments or within the privacy of our home.  Perhaps it is the recent successive course of 3 different antibiotics that has caused the increase?  Perhaps these episodes will diminish again after the last dose in a few days?  Or perhaps not.  I have no idea what is to come as their pattern has changed.

The next truth is that more people than I am comfortable with have now witnessed my private hell.  Tis quite embarrassing, quite humbling and wretched to have to be carried down a flight of stairs and out to the car after an evening of fellowship with friends from church.  You see, after a lively Bible discussion with some friends on Sunday night, I had to ask the man of the house to help me find a quiet place to rest; a series of seizure attacks was beginning.  He showed me to a back bedroom upstairs which worked well initially:  the seizure attack came on strong then subsided as I sobbed in the comfort of a room away from everyone else.  The only problem was when the attacks didn’t stop, no one could hear my attempts to cry out for help!  The act of crying out triggered more attacks.  A train went by in the distance then another, covering the sound of my cries for sure.  After a long while, my husband came looking for me and found a shell of a wife curled up in a recliner.

Initially I had difficulty speaking and responding to his questions.  If someone tries to touch me or move me during an attack, these also can make them worse.  Both gratefully and sadly, Steve has been in this situation with me before many times and knew what to do.  I still couldn’t stop crying.  Geez.  So Steve gingerly helped me sit up and slowly rise to a standing position.  Unfortunately the neurological collapse was settling in and I was unable to stand on my own.  What would occur over the next hour was like recovering from a stroke:  left-sided parasthesia with my bilateral lower extremities and proximal left arm affected the most.  My speech was slowed and simple.  My thinking narrowed to the tasks of managing the episode without injury.  I became terrified of the two sets of stairs between the master bedroom and our car parked in the driveway.  Steve ended up carrying me, first to a couch on the first floor then second out to the car with a break inbetween.

At this point, the only folks left visiting in the house were the couple who lived there and their father.  Mrs V., the wife, had seen a seizure attack episode last year when she graciously  stayed with me for a night.  Steve was out of town and her presence was a great comfort.  I have wondered if her husband sometimes doesn’t know what to make of the chronicity of this illness plaguing my life?  Who knows.  I do appreciate his prayers when the group closes for the evening.  Well tonight, Mr. B. too got to see the worst of it as well.  Great.  But that was not my prayer when I was secluded in the bedroom!

When the attacks did not stop, I pleaded with the Lord to please make them stop!  I did not want the horror of having to be seen unable to walk, hanging from my husband’s arms.  I tried to get up myself but the jolts held me back.  I tried to vocalize, “help,” but it was not loud enough for anyone downstairs to hear me and the attempts to speak triggered smaller tic attacks which held me back.  Another truth is that inner voice I know to be the Holy Spirit was pressing on my heart to wait and not try to force a situation that was out of my control.  Obviously I was not in control and that was not going to change anytime soon!  I turned my focus to my breathing.  Breathing was difficult and my chest was hurting from the crushing chest compressions that accompany the vigorous shaking episodes.  Yes, all I could do in that moment was breathe and maybe ask my husband to remember to get my purse before we left the house.

I am sorry if this is too upsetting for you, gentle reader.  This is crap-o-la-ski at it’s finest!  My truth today is that I have been sad most of the day, even crying some.  This stuff is difficult for sure.  More attacks, less intense “tic attacks” I call them came again today during my first treatment by a new chiropractor.  More tears followed afterwards this time as well.  Sigh.  What I’ve got here is simply a very tough season in my life and I just have to endure it.  But I know from the past trials in my life that these experiences will not go on forever nor will they be without meaning or purpose.

The Bible tells us that our suffering can produce endurance, endurance, character, and character, hope (Romans 5:4).  The Bible tells us that we may endure many different kinds of hardships for His name (Revelation 2:3), that He will ultimately rescue us from attack for His glory (2 Timothy 4:18), and that we are to persevere with the supernatural strength that He alone provides with His righteous hand (Isaiah 41:10; 58:11).   We know that in this world, even as those who are in Christ Jesus, that we will endure many trials and hardships.  No one is immune to this!  These are the consequences of living in a fallen world.  Even the most wretched of situations can be used to strengthen us as they did for the first disciples (Acts 14:22) if we but hold on and do not become embittered by them.  We must cry out to God at these times because the Lord promised that He will be with us now and until the end of our days (Matthew 28:20).  He is present and weeps with us in the midst of the heartache.  The person of Jesus Christ, the indwelling Spirit, and the blessing of the Father are with us in our time of need.

It did not take very long into my time of agony upstairs in our friends’ home that I knew that I was not alone up there.  The Lord was with me then as He is with me now as I write this to you in the wee hours of the morning.  In the shadow of His wings, in the protection of His mighty right hand, I was able to endure the crisis at hand.  And you know, He can be right there for you too.  It does take but one thing:  to call upon His name:  Jesus.  Can you remember that?  The truth is that if we do call upon His name, one day soon all this sorrow will pass away and we will be in the presence of the King forevermore.  Now that is a party, an eternal bliss that I do not want to miss.  I hope you will be there too with me.  Just knowing you are out there comforts me you know.  Will you join us?  Oh I hope so!  This is His the reality of His new covenant that is now here, our hope, our joy no matter what comes.  This is truth that we can handle for sure.  Sounds wonderful doesn’t it?

 11 For the Lord will deliver Jacob and redeem them from the hand of those stronger than they. 12 They will come and shout for joy on the heights of Zion; they will rejoice in the bounty of the Lord— the grain, the new wine and the olive oil, the young of the flocks and herds. They will be like a well-watered garden, and they will sorrow no more. 13 Then young women will dance and be glad, young men and old as well. I will turn their mourning into gladness; I will give them comfort and joy instead of sorrow.   Jeremiah 31:11-13 (NIV)

To Hell and Back: Part 2

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Continued from To Hell and Back:  Part 1
Back by Grace
I had caught a glimpse of hell on earth with the most violent seizure attacks that I had ever experienced in my life in the wee wee hours of the morning on July 5, 2013.  Our mini family reunion and gathering for a memorial service was shaping up to be a living nightmare with no end in sight; something like, “weeping, gnashing of teeth” were now my living hell as the Bible describes hell for those eternally separated from God.  But I have Jesus in my heart!  Nothing made sense.  Surely I felt as though I was dying.  I found myself asking:  where is God now?
The story continues.
It was inching closer to 6:00 a.m. EST on Friday, July 5th.  Since we were now in the CST zone, my husband, Steve, and I figured out between the ongoing attacks that we might be able to get a little sleep before the sun came up if these episodes would somehow stop.  But how?
The inner voice I have come to know as the Holy Spirit in times such as these suggested that I ask Steve get my industrial gas mask out of my suitcase.  He did, I strapped that baby on, and within 5 minutes the episodes had diminished in frequency, intensity and duration.  Just a low grade intermittent series of tic attacks remained and I started to be able to speak without eliciting further attacks.  Steve was already talking about packing up and going to a hotel immediately or even driving home tomorrow!  We doubted how we could possibly find the strength to do either option at this hour and what if I reacted to the hotel room?  Then what would I do?  Sleep in the car?  I wasn’t even sure it would be good for me to go to the car for awhile parked in front of my in-law’s because of the hot and humid weather of Arkansas:  perhaps I would suffocate in my sleep!
Then my waking prayer led me to suggest to Steve that he try to get some sleep and I would just lie there in bed for awhile until he was more rested.  I needed to trust that after some sleep Steve could lead us in what to do next and in the meantime the Lord would somehow sustain me.  I was a mess anyways so I should not be trusted to make any big decisions!  It was becoming difficult to breathe through the large respirator mask with my sore, constricted chest.  I was also getting very warm further aggravating all of the flared up noxious symptoms like the massive neck headache.  But I must wait anyways.  Neither one of us in no position to make a rational decision at this time.
Turns out that I was able to sleep about 2 hours.  I woke up feeling like my head was in a vice!  My chest tightness was actually reduced however, perhaps by breathing against the resistance of the respirator mask fitted to my face.  Wow, just like loosening a tight muscle through deep pressure, the intercostal muscles of my rib cage had relaxed enough to allow both breathing and sleep!  And somehow I was now fully awake.  I felt terrible but awake.  Then the next steps came to mind.
I gathered my purse, got dressed in my clothes from yesterday, grabbed some food and water from the kitchen and headed out to our car.  There was no time to worry about clean underwear and the latent UTI I was still battling.  Surely I would feel better after some nourishment as it usually had helped after past seizure attacks, so these would be my next steps.
The fresh air outside felt good.  It was considerably cooler and less humid than when we had arrived.  But geez (!) did it feel weird to be sitting in the passenger seat of a Dodge Magnum at daybreak, loaded with 21-foot and 19-foot surf skis on the roof!  How the heck could I remain inconspicuous in a fighter jet set up like that?  I saw the elderly neighbor next door walk outside to get his morning newspaper.  I’d been sitting there awhile, his house was for sale, and I was insanely curious about the listing information in the box in front of his house.  My how the delirious mind wanders!  But at that moment I just wanted to sink below the window line of the car door, if you know what I mean!
I must mention here that my husband’s family knows the story all too well of a really really close female family member suddenly leaving a family reunion with the family car sans family!  The father and his children were stranded several States away from home without transportation or monies to get home any other way.  Turns out that a couple family members helped them out and the dad rented a car for part of the trip.  Now here I am, relatively new to this family, suddenly disappearing from the bedroom, sitting in the “family car” with my set of car keys, and no one knows what is going to happen next!  I knew that I was not going to leave to go anywhere until someone in the household woke up, even if I knew that practically speaking, I could take time to find a hotel while everyone was sleeping.  But leaving a “ransom note” simply would not be enough to remove the reminder of the old wound.  Leaving would just hit “too close to home” if you know what I mean!  I had to stay put.
Then I noticed that the neighbor next store had come outside again, this time to take an early morning walk.  He was now talking to another neighbor just up the hilly, winding street.  Taking a walk was one option I had considered to kill time so I got out of the car.  The H.S. was working again and the idea came to ask the gentlemen about other hotels or rental properties within the community.  I knew that my mother-in-law’s house had been rented in the past.  Perhaps there are other homes like hers, maybe one with hardwood floors?
Turns out that the men were very friendly and helpful.  The retired Baptist preacher told me that a house across the street was was a rental and there was a sign with a phone number posted over the carport.  We walked over to the house and I copied down the phone number.  I thanked him as we finished chatting and returned to my fighter-jet home base to start making phone calls.
My dearest Steve walked up to the car about then to check on me.  I updated him on the information that I had just learned and said that I felt awake enough to start making phone calls.  He was still so exhausted that he needed to return to bed.  I didn’t see a problem with that and kissed him goodnight once again.  Before long my in-laws, my “other mom” and “other dad” as I call them, were up and checking on me as well.  With tears I shared what had happened (and would learn much later that night that they had heard me crying earlier and knew something was wrong).  I did not want them to feel bad as they had graciously opened their home to us to stay with them for the weekend.  Later I found out that they never got the Facebook message about my sensitivities!  Sigh.
Within a few minutes, my “other dad” and I were checking out the housing options that sounded suitable for me.  Over the next several hours I had done a sniff test at the local hotel, had another seizure attack and mostly recovered, toured one of three rental houses, rented one, stopped at the library, and returned back to their house to pack up the car.  By this time my Divinely-sustained energy on two hours of sleep was waning.  Like a damaged war plane on auto pilot, I eventually got to bed after some food, supplements, spit bath, etc. around 3 in the afternoon.
The townhouse rental worked out reasonably well as alternative housing.  I could prepare all of my special dietary foods without inconveniencing or even offending my “other mom.”  My in-laws’ provision of a place within the gated community of Hot Springs Village even gave my husband’s sister and husband a place to crash closer to family for two nights with us in their own suite.  Staying with us saved them hours of driving and increased our time to visit with them.  Sweet.  Unfortunately my time was cut short some by some more attacks (cause I’m still on Lyme antibiotics that flares up the attacks too) but it was still more time overall than we would have had if they were staying an hour away where their vacation had started.
Steve and I had some very sweet respite in that townhouse in Hot Springs Village.  We got to share our surf skiis with our family at one of the beautiful lakes nearby too.  If you read between the lines, this means that I got back in my surf ski kayak for the first time in a year!  For that, I am also grateful.  It felt great!
“To hell and back” is my sentiment for this past long weekend.  Going forward, my antibiotic regime is about to change to better address the UTI.  Perhaps I will tolerate the Levaquin better this time than in the past, for having endured the wretched side effects of the Doxycyline I’ve been on the past 2 weeks.  As the long weekend continued, I ended up reacting to environmental toxins in more places than my in-laws’ home and generally recovered o.k. after each. Gratefully, the reactions were in private, my preference.
So the Lyme and the Chronic Inflammatory Response Syndrome certainly did not take a vacation this Fourth of July holiday!  And yet I can’t help but see that having the attack and spending time with my “other dad” brought us closer together in a way that probably would not have happened if everything had gone  smoothly.  I saw a tenderness in him on Friday that I will cherish.   Steve and I have only been married five years.  Sometimes it takes a lifetime to have a connection like that with your “other dad” . . .
There’s a saying that I’ve quoted in this blog before that bears repeating here:  When going through hell, don’t stop!  Yup, that’s a funny one!  The take home message is this:  if you but do as scripture leads, with the guidance of the Holy Spirit in the name of Jesus Christ, our suffering (seizure attacks) will produce endurance (on 2 hours of sleep), our endurance will build character (to enjoy time with my father-in-law), and our character will produce hope (that our suffering will not be wasted).  I encourage you to mediate on Romans 5:4, where these themes are found in God’s Word.
When going through hell on earth do not stop.  The Lord is working and it will be for our own good and joy.  He promised for those who believe in Him (1 Peter 1:6-9) and in the end there can be great joy!
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To Hell and Back: Part 1

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The Bible tells us that in hell there will be weeping and gnashing of teeth.  There will be unquenchable fire, separation from the loving and gracious tri-une God and it will be forever.  And “forever” is a concept that is nearly impossible for us humans to understand since we live in a temporal, finite world where God is with us if we but reach out and call upon His name.

To me, hell sounds like unending misery at the highest level.  There will be no relief and eternal darkness in hell.  When physical and emotional trials push us beyond the breaking point in our lives, like the pain of an acute injury or death of a loved one, perhaps we may start to imagine what hell might be like.  Fortunately this level of anguish in our lives tends not to continue for the rest of our lives.  Often there is a measure of relief at some point.  When that relief comes we can also be grateful that the Lord is merciful, that joy may return if we but keep our eyes focused on Him.  While He promises that He will never give us more than we can handle, the only way to “handle” the acute level of misery is with Him.  Don’t we all say it no matter what our beliefs, “God help me!”  His presence in this life is a supernatural, mysterious phenomenon.  It is also an indwelling benefit (through the Holy Spirit) when we have a personal relationship with Jesus Christ.
My personal hell began in the wee hours of the morning on July 6, 2013.  My husband, Steve, and I had just driven 16 hours through the night from our home in Indiana to visit family in Hot Springs, Arkansas.  We had made 2 longer stops, some shorter stops, and were grateful to finally arrive at 5:00 a.m. EST.  We were also glad that his parents had made it from their primary residence in California to this second home just hours before us and had left the door open.  But when I stepped inside the door I sensed some mustiness and fragrances that might not go well with my Chronic Inflammatory Response Syndrome.  I had made an attempt to let them know my sensitivities before our trip but I guess it wasn’t sent through the proper channels in a timely and meaningful manner for them to act on the information.
I helped Steve unpack the car and did a quick scan around the house.  Yes, the carpet and fixtures were older and the place had remained vacant for most of the past year.  Someone was hired to keep it clean and that may have provided other issues from the chemically-laden cleaning solutions.  The bedspread and bed skirt were cute but appeared dusty so we removed both and put them in the closet.  I saw decorative aromatic sticks on a shelf in the bathroom with scented hand soap in a dispenser on the sink.  The mattress in the guest bedroom was uncovered and appeared older but we couldn’t do anything about all of that at that late hour.  I put our own clean sheet over the top sheet on the bed and Steve opened the windows.  Gratefully, the air was cooler overnight in this shady part of Hot Springs Village, Arkansas.  We prepared for bed and hoped for the best.  We were trashed from travelling for sure.
Within a few seconds the seizure attacks began.  Oh these weren’t the usual kind where my body shakes uncontrollably from my torso through my limbs, I can’t breathe, and I may or may not groan in discomfort as my head whips forward and backward or side-to-side.  This time the movement was so violent that my body was lifting up and down from the bed repeatedly!  The chest compression-like tightness was so bad that it restricted my breathing painfully so; I wondered if my heart was beating at all!  The violent attacks lasted about 20 seconds each and continued with a 30-90 second break in between each one.  I had no idea when the next one was coming!  I gasped to catch my breath.  Steve was in horror.  He had bad attacks before many times before but not this bad!
I could not speak, move, or do anything to help myself.  I held on for dear life.  Aware that my father and mother-in-law were sleeping in the next room, I struggled to keep from vocalizing during the episodes.  Finally anguish broke through and I could not stop myself from sobbing uncontrollably.  What a wretched episode to have to endure!
In my own strength, I developed a plan. I was feeling nauseous and vomiting appeared imminent. If I started vomiting, then I would blurt out through the seizure attacks for Steve to call an ambulance! So there. I had now identified what I considered to be the worse-case scenario and what we would do if it happened. With that in mind, I held on a little longer . . .
There was no indication that my living hell would ever stop.  I could not find a way out on my own.  I had caught a glimpse of hell on earth and it appeared that I was stuck there indefinitely.  Dear Lord, I’m coming home!
See, “To Hell and Back:  Back by Grace (Part 2)” for the conclusion of this blog post.

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.