My Facebook Family Understands

 

 

Thank the Lord for Facebook!

Remember that John Lennon song from the 70’s, Whatever gets you through the night . . . it’s alright . . . it’s alright by me?”  Well I am not endorsing riotous living by any means!  I am saying that for me this past weekend, having a Closed Group in which to vent some drama was my “whatever” that got me through a couple of unusual nights and days when everyone else was asleep.  Thanks for being there Cyber Friends.  Here they are, out in the open:

Friday

Up very late again after the Lord added His increase so I could do some baking. There’s one more day to go entertaining in our home while trying to: avoid toxic (chemical & mold) exposures and squirrel away when the convulsions come. My hubby’s kids have done a reasonable job following our precautions, thankfully. I’ve missed some activities again this year. (For example, a partial Skype date with more family when I had to leave for an hour-long noxious episode!) Sometimes I feel like I have disappeared and other times it’s just me spending so dang much time in the kitchen preparing my special diet. Guess I’m glad I finally got my stuff done! I’ll have more food prep help tomorrow. Hey thanks for listening!

FB Tree

Saturday

Strangeness abounds! Still alone again after not being able to get up to join family due to wretched convulsions. Instead of making a nice honey maple ham dinner (for which I had prepared last night) my husband’s daughter made a different lunch for everyone. I was still in bed seizing! Now I’m up eating my special food alone with you and the Lord in front of our pretty tree.

The fam went indoor go-kart racing! Before they left and whilst praying the spiritual warfare would end, I got a text that my ex-husband needed to contact me for the first time in 10 years! Could he have gotten saved? So my time alone now has been tranformed into a prayer time.

No worries. The Lord has me and you gently in the palm of His hand. I see He may have “others” there too and it is all good.

Update to follow . . . With love, J

Sunday

Finally stabilized and was able to go out to eat with relatives after a wretched morning (aka husband carrying me to the bathroom then bringing me some food before I crashed for another 2 hours while he went off to church). No, the ex did not get saved so I will continue to pray if he comes to mind and in the meantime block further communication for sanity reasons.

Sometimes it just helps to vent the drama that characterizes a life with serious illness. I’ll bet that many of you reading this get it. Our “new normal” never really feels normal at all. I rest in the fact that the Lord sees all and carries me though each breath. When I couldn’t breathe later last night in repeated seizes, I reminded myself that I ain’t dead yet so it must be all uphill from here! “Trust in the Lord and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths.” Proverbs 3:5-6: you rock! It’s gonna be a better week! :J

Addendum:

Have a blessed couple of days, Gentle Reader, making the most of whatever is remaining in 2014.  With a ton of yummy leftovers in the frig and sweet Christmas memories too, it’s going to be alright, alright, alright by me too.  :JJ

And in the meantime . . .

November 20, 2011 around noon.  I was alone when my body began shaking uncontrollably.  I was having difficulty thinking clearly and my speech was strained.  All kinds of fearful, crazy thoughts ran through my mind including blaming myself for what was happening!   It was the day after travelling about 16 hours to see family out of State and my husband had gotten up early after just a few hours of sleep to go to church and out to lunch with everyone.  Having never fully recovered from viral hepatitis 1 1/2 months earlier and somehow surviving the extended car ride, there just wasn’t any strength left to get up in the morning and join them.  Now I was immobilized and terrified of what was happening to me.  Somehow I figured out that low blood sugar was worsening the symptoms.  Finally I figured out that I needed to call Steve:  he could bring home a take-out lunch for me from the restaurant and I would hang on until he got home.  The only problems is that everyone was stuck on the other side of town anyways, with the drawbridge up that connected the roads between us!  Flash forward about two hours and the episode was over.  I fell into a fit full sleep and showered much later that day, pretty beat up from everything and quite embarrassed too.  What had happened to me?

April 15, 2012 at 3:00 a.m.  I awakened on my birthday with a nightmare and unusual shaking.  The nightmare wouldn’t stop even though I was awake, whether or not my eyes are closed.  I remained awake a long time, unable to fall back asleep.  This incident occurred nine days after beginning to use a Rife machine, six days per week.  (A Rife machine generates wavelengths of light and sound in program sequences designed to match the vibrational frequencies of various tissues and organisms in the body.)  Treatment for Lyme disease had begun in January with a 5-week course of antibiotics then continued with Rife treatments late in March when I could not tolerate the antibiotics.

April 18, 2012 at 9:20 a.m.  After running 15 minutes of various Rife programs, I was shivering uncontrollably.  My hands and feet felt extremely cold.  Fatigue overtook me and I napped almost two hours.  I woke up feeling somewhat rested until crashing after additional treatments including the beginning of a series of magnesium injections.

April 19, 2012 around 5:20 p.m.  I am suddenly awakened from a post-Rife treatment nap with the barking of our dog.  I am unable to move for almost 30 minutes.  My mind is dull yet rested until the second Rife treatment two hours later when I felt depleted once again.  I learned that this can be a typical response to various treatments for Lyme disease and is often called a herxheimer reaction.

April 21, 2012 around 3:30 p.m.  From my treatment journal I note, “moderate then moderately severe tics as I went to take a nap.  Cast out with calling out the name of Jesus.  Calmed.  Re-started.  Called out 2-3 more times and stopped.”   A two and one-half hour nap followed shortly thereafter!  Napping became my pattern after running Rife programs; my days were consumed with managing all the aspects of treatment.

The attacks of tic episodes continued every other day or so, mixed with nightmares most every day through the rest of the month of April.  Beginning May 5th, the low grade and severe tic episodes ramped up to virtually every day.   Most often they occurred when falling asleep after a Rife treatment or when trying to fall asleep at night.  The first extended episode that appeared to be a full-blown waking seizure was on May 12th after a nap.  It lasted 1 1/2 hours!  I struggled to keep myself from hyperventilating or stop breathing altogether.  Talking or voluntary movement were extremely difficult and made the attacks worse when attempted.  I cried!  My body temperature dropped and both thirst and hunger pangs increased dramatically.  I was miserable, exhausted, and terrified all at the same time.  While the nightmares would continue most days for another two weeks, they generally ended and recurred occasionally when taking a new medication or supplement.

Flash forward one year.  We remediated our home for mold early in 2013 and both my medication and supplement regimes had changed many times.  The seizure attack episodes increased to a couple of hours on a daily basis with some patterning in addition to after exposure to noxious stimuli.  I stopped attending worship services at our church since it is a water-damaged building with mold.  A recurrent urinary tract infection required treatment with a series of different antibiotics.  The seizure attack episodes escalated into convulsions 1-2 hours after taking an antibiotic.  My world continued crashing in on me as I began reacting to more and more foods, supplements, and types of noxious stimuli including loud music and bright lights.  The tic and seizure attacks ramped up in the summer of 2013 to 3-4 times per day for a total of four hours per day and continued at this level for the next EIGHT MONTHS UNTIL JANUARY OF 2014.

In January of 2014 I was very beat up from the wretched seizure-like episodes.  Remarkably they generally decreased to three hours-per-day in February after a series of extremely strict dietary regimes:  a stricter, no-low-starch-veggie-Candida diet; Candida and mold-free diet; Candida, mold-free, and low sulfur diet; and finally where I am right now:  Candida, mold-free, and low oxalate diet.  I have religiously documented my treatment protocols and responses to them, tracked trends, consulted with neurologists & a pulmonologist, networked in numerous online forums and support groups, and researched every angle of this illness to no avail.  Overall these days, this sickness is looking more like a biotoxin illness than Lyme Disease as evidenced by some genetic testing of late.

As of February 2014, some improvements have come including being better able to stay asleep and having stronger nails!  My hair is thinner and so am I!  However, I am largely deconditioned from intolerance to a full daily schedule of activities including exercise; headaches, global pain, ringing in my ears, and more have worsened.  I haven’t worked in two years and am homebound much of the week.  Concentrating on my hobby jewelry business is extremely difficult.  Somehow I have still continued to blog and am grateful for a two-week improvement in my cognition long enough in October to publish my eBook:  Hope Beyond Lyme:  The First Year.  I am grateful for all of the wonderful fellow sojourners I have met these past 2 1/2 years and have made some new friends too.  When I see that a non-believer has read this blog, my spirit soars to think maybe the Lord is using my trials to reach others with hope for His glory!  To see the Lord, Jesus Christ, as my sustaining grace and a source of hope for enduring the trials of this life makes this blog more than a journal and for that I am humbled, grateful.

And in the meantime . . . I am ready for the seizure-attacks to stop, of course!  My neck is killing me from all of the thrashing about you know!  I grieve the loss of time, the thousands of dollars, the stress, the isolation, and the strain on my beloved Steve.  Will I become disabled or return to work?  There is only One who knows the answers to that question and another big one, “why?”  Gentle Reader, if you have read this blog before, you know what I am about to write here:  it’s o.k.  I’m going to trust the lover of my soul anyways, no matter what happens.  I may try another treatment approach before I can see the doctors in a new clinic up in Michigan next month.  High CBD hemp oil (legal in all 50 States) has been shown to work well for both children and adults with seizures and who knows, it just might help me too.  However, I have been down this road of hoping for a cure before, only to have things worsen.  Yeah, supreme bummer for sure.  Sigh.  It takes what it takes.  Sometimes we wait and sometimes we go backwards.  If the Lord leads me to some new information and gives me the ability to search it out . . . if my husband agrees . . . if the resources present themselves . . . and if there are no barriers after prayer and sleeping on it . . . sure, Ima gonna try it.

So when it works, Lord willing, you can join me in rejoicing for having hung in there with me along the twists and turns of this difficult journey.  I hope I remember to lean on the Lord when times are good as well as when they are bad.  Please help me keep my Jesus in front of me as He goes before me each day.  Now let’s all get ready for some good news, k!

Parking Lot Poem #1

Sure was a tough time in my life when transitioning from married life to single life.  The refining fire was intense, laden with more trauma than I ever thought I would endure in such a short period of time.  Separation, divorce, 5 moves, 4 jobs, 2 injuries, a condo fire, death of 3 family members, and my mother’s cancer story contributed to over-the-top stress.  I have so much to be grateful for these days, that’s for sure!

So how did I cope?  First my faith in the Lord grew stronger.  Second, I needed counsel and found it through a few remaining close friends and a professional or two.  Three different support groups related to grief and divorce convinced me that it was not me who was going crazy:  my life circumstances were crazy!  I began journaling more regularly too.  Perhaps if blogging was in vogue in 2004 I would have started mine back then as well.  But one of the most useful tools was the smallest:  a little spiral notebook in the console of my car . . .

I’m not quite sure where the idea came from to journal in my car.  I found a small pocket-sized steno book called the “fat lil’ notebook” and kept it with me for making notes to myself.  One day it hit me when I felt completely lost that maybe I needed to write a little something more to clear my head, right there in the parking lot on June 10, 2004.  The first entry that I can find went like this:

It’s another parking lot poem this noon

Alas a month later in the rainy part of June.

My new job must end to save my integrity

And the work ethic I’ve carried with me for decades.

So now which way to turn, oh Lord

The great authority and provider of my life?

This makes no sense and yet it does:

To trust you no matter the chaos my days do bring.

For in the end or looking back when down the road,

I’ll see this day as one leaned on faith

And be glad I knew you when and where

I napped in the parking lot before a great swim once again.

 Years later it all made sense to me why the parking lot poems were so meaningful to me.  When we take a drive somewhere, we park our cars and go into a business or residence of some sort and leave our vehicle for a time.  We return later, put our belongings somewhere near us, turn the key in the ignition, and take off for our next destination.  The time in the parking lot or driveway is a point of transition from one destination to another.  We have completed one activity, gathered our things, and prepared to make our way to the next location.  During the short time when we are sitting and stationary, we might have a quick thought about what has transpired (did we accomplish something or did we encounter difficulties?) and think about where we are headed next (how do I get there and who will I see/what will I do there?).  The brief moment allows us to re-group, re-gather, re-launch until it’s time to go back home again.  This time goes quickly for most folks, I reckon.

That time did not go quickly for me at all.  I often got stuck in the parking lot when I was trying to move from one activity to the next.  I cannot explain it exactly.  I just know that the overwhelming burden of my life at that time made it nearly impossible at times to make transitions, change activities, or gear up for the next item on my “to do” list.  Have you ever experienced this Gentle Reader?  I just could not move on.  I couldn’t even tolerate music or news on my radio as it became like noise in a crowded bus terminal laden with diesel fumes.  I would often sit there in my little black race car (aka Honda Civic) in silence for what felt like a long time before I organized my thoughts and initiated the steps to get going again.  This is where the Parking Lot Poems changed everything.

Poetry is a looser form of communication than prose.  There aren’t as many rules in free form poetry, you can stop and start at any point, and emotions can blurt themselves onto the page in incomplete sentences.  It gets the words out quicker, eh?  Do you want to hear something else crazy?  After that 3-year period of time when writing poetry was such an instrumental tool in coping and healing, I stopped writing poetry.  I guess I didn’t need it anymore.  Oh I tried a few times but the words simply did not flow freely.  No more parking lot poems for me!  My favorite poem that was initially written in a parking lot became part of a 9-foot mural on a wall in my home, the one with the custom window treatments I wrote about earlier this past week.  I’ll save the story about “The Wall” for another time.

For this early morning writing, I’m just using my newer friend of blogging instead.  I am having trouble sleeping this day due to some noxious events.  Sure got some good thinking done tonight though and for that I am grateful.  Better go park myself back in bed before the sun comes up and try to make a go of sleeping again.

Thank you Lord for your gift of words.  Your Word is how we know you and fall in love with you.  Hmmmm.  Reminds me of a song.  May I sing it in my heart to you Lord?

Words

Spring and Fall

DSCF8784My body will tell you tonight:  it’s quite an accomplishment to finish our Spring and Fall yard clean up projects all within 24 hours!  Whaaat?  Such is life these days.  All completed just in time for the long soaking rain storm outside my window as Winter approaches . . . the maiden tulip bulbs are going to be real happy in their new home!

I am exceedingly grateful to be functioning somewhat better despite the ongoing noxious episodes that occur most days.  Then there were two noxious-free “holidays” within the past four days.  THIS IS HUGE GUYS AND GALS!  I haven’t had more than a one-day break per week since living in the hotel at the beginning of the year when we were remediating our home for mold.  Looks like the IV magnesium treatments (counted #20 today) and sugar/sweetener-free cholestyramine are beginning to work a wonder inside of me.  I am grateful and humbled.

Despite all of this good news for some reason I needed to cry a bit today.  This year has been especially traumatic.  When I’m in one of those hour-long to several-hour-long episodes my ability to think and reflect is gone.  My mind is blank.  No processing occurs of what is happening to me.  I have heard patients with dementia describe his or her mind this way.  There just aren’t any thoughts.  Gratefully I do not have dementia.  I often wonder, however, if there will be synaptic damage from the almost 2 years of seizure attacks.  Then again, maybe the neurons just needed a little Spring cleaning, resetting, and the like.  Anyways, I believe that to grieve the loss of my health is, well, healthy.  Perhaps it will pave a comprehensive path to healing?

The end of Psalm 139 reads:

23 Search me, God, and know my heart; test me and know my anxious thoughts.
24 See if there is any offensive way in me, and lead me in the way everlasting.

I have heard an application of this passage that it can describe the need to reflect upon and grieve a past trauma as part of a God-honoring healing process.  The Lord knows me and my circumstances in addition to the outcome.  By opening my mind and heart to His merciful grace under the shadow of His wings, I will find rest.   I have prayed many times to “get” the purpose of all of this suffering and wondered if I was “there yet.”  I asked my husband Steve, my God-honoring spiritual leader, if he thought there was anything I was not seeing.  Was there some sin or character flaw that required repentance?  Steve was gracious when asked these questions.  We both saw the little lessons and unexpected blessings that were the “silver lining” to this illness.  We have not become embittered.  We have drawn even closer together and to Christ.  Whew.  Thankfully.

Blogging started as online journaling and has become so much more. I do hope that my writing will be used for God’s glory and point people who are going through serious trials, to the person of Jesus Christ.   To the Gentle Reader out there, you have also helped me find a plan and a purpose for this time in my life.  The process has become as meaningful as the lessons learned.  One lesson learned yesterday:  don’t leave a wheelbarrow full of mulch out in the yard!  Put it under the covered porch.  Six times it got rained on and rained in.  Geez that was one heavy wheelbarrow!

A little humor helps fer shur.  And my Stevers is a great model of the value of silliness in the middle of the crap-o-la-ski.  (You were missing my Polish, I know, so here ya go!)  Thanks for hanging in there with me.  Wish I could hug ya, eh?  :J