If I get to see you . . .

 

If I get to see you in the coming year, please understand that I will be singing songs of joy in my heart!  Social isolation has been one of the most devastating effects of serious illness from these past 3 years.  Should the Lord allow the circumstances for me to get out for an activity other than medical or a trip to the grocery store, I CELEBRATE!!!

So if I might ask for a few accommodations when we get together and you graciously oblige and I still get sick then blame any negative symptoms you may witness in me as the consequence of illness and not you!  Very few folks live in a “clean room” like we have here at home.  I did not clean at this level either until it was a matter of survival.  Steve did not engage in my extreme mold/contaminant behavior strategies until two years ago.  These strategies are necessary for this season of our lives together.  Overall I do better when we follow certain guidelines resulting in less reactivity, the worst of which are fewer seizure-like and convulsive episodes which continue daily.  We are implementing some “due diligence” from what we have learned to reduce my suffering with the goal of eliminating this illness altogether.  We believe that the Lord has allowed these trials for mysterious reasons and ultimately His glory.  He is good!

Both Steve and I recognize that there are definite signs that I am getting better.  We have trained our eye to search for even tiny changes in the pattern and intensity of episodes, pain, and reactivity to keep us hopeful that one day I will be well.  It is happening!  So please don’t be discouraged when either one of us might mention that I had a rough night or you witness a significant setback.  Recovery is a long, jagged line of progress, setbacks, and lateral “bunny trails.”  The overall trending is positive!

The most important accommodations that would be helpful if we get together are as follows.

Meeting in a public place:  Select a place with less noise and less loud music.  Newer buildings are generally better than older ones; please no historic buildings or ones with known basements or crawlspaces and history of flooding.  Restaurants that make their own food with fresh ingredients are better able to modify dishes to meet my food sensitivities.  This rules out most fast food places!  Letting me know the name and phone number of the establishment ahead of time will allow me to contact them with my needs and make the experience of ordering food more pleasant for both of us!  Please do not wear cologne or perfume that day.  I will need to greet you and depart with a “virtual hug” to avoid exposures to hidden elements that might be on your clothing or coat.  Forgive me if I sometimes forget this step in the joy of the moment when I see you!

Meeting in your home:  This is still a situation that I avoid since there are too many variables at this time that may cause serious problems.  I cannot come over if you have 1) ever had flooding in your home of any kind from a leaky toilet to a wet basement or 2) have older carpeting.  If you are willing to have me then please remove all fragranced products at least the day before we are scheduled to be together (such as plug-in or spray air fresheners, candles whether lit or not, potpourri, etc.)  Keeping windows cracked open in cooler weather or open in warmer weather to allow fresh air inside always helps (unless someone is burning something nearby outside!)  I prefer to visit in the area of your home without carpeting and sit on non-upholstered furniture.  Wood, plastics, and leather are best.

Staying overnight:  If we are invited to stay overnight then we will either bring our own linens, blankets and towels, or ask that you wash and dry everything in fragrance-free detergent and softeners (including dryer sheets).  Please replace a moldy shower curtain liner with a new one!  I will bring most of my own food and hand soap where possible.  Providing non-cured, non-smoked meat cooked only with salt, plain oatmeal, plain salad-type vegetables or zucchini/cauliflower without seasonings will be a HUGE treat!  I will always bring the extra condiments and food that I can tolerate.

Yeah, I know that this is a lot for a busy household to prepare!  Thank you for helping us out with this stuff.  Steve and I are exceedingly grateful to have recently obtained a travel trailer which has helped manage all of this tremendously well.  (It is a lot of work for us too, I tell ya!)  Both of our families and many close friends now live out of State so travel is necessary to see them.  This single change in our mode of travel has allowed me to leave our home overnight much more safely and go places from which I have been cut off for most of the past three years.  We are humbled and blessed!  I really like having a mobile safe house that has already opened up my world, provided privacy during setbacks on the road, and aided sleep with a really comfortable bed that can be hard to find when away from one’s own humble abode at home.  Thank you Jesus!

Visiting Daniel and Elizabeth in Alabama
Visiting Daniel and Elizabeth in Alabama

 

We are hoping that the ongoing extreme avoidance and dietary strategies are temporary; some level of precaution albeit more relaxed than the current level will likely continue for some time.  How long will we need to do all of this?  We simply do not know.  We believe the Chronic Inflammatory Response Syndrome (or Multiple Chemical Sensitivity) is due to mercury toxicity and we finally have the correct treatment protocols to get me well.  I have excellent medical guidance and a proven treatment plan to follow.  We are hopeful that I will be in better health within this year!  I AM GOING TO GET WELL!!!

And that Gentle Reader, is much to celebrate!  JJ

Puffy white clouds and 5 sparrows

 Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows.  Luke 12

At first it looked like a gentle breeze flowing through the branches of the variegated dogwood bush outside our bedroom window.  Puffy clouds drifted past the backdrop of the truest “sky blue” you could desire on an early summer afternoon.  Such a simple scene, peaceful too.  Then again the rustling appeared to come from below my view.  Was there, wait, yes maybe there’s a little critter in there moving the branches about?  And lo there she was:  a lone house sparrow spritely jumping about within the leaf cover in and out of my view just a few feet away.  Better not move a muscle or I might disturb the work of my feathered friend.  Does she know that I could almost reach out and touch her marbled wings if the screen window didn’t separate us, didn’t provide secluded freedom for your Saturday play . . .

The little one flew away as my gaze returned to the light blue walls next to the bed inside the window.  Maybe if I waited just a little longer another visitor would appear?  To my delight the green-with-white birdhouse was rustling again from the top, the bottom, and even just beyond my view!  Let’s see:  there’s one, two, three . . . a fourth appeared and darted deeper into the cover of leaves as a fifth little birdie perched right in front of me too.  Silly little one.  He began preening his ecru-colored chest feathers without a care in the world as the branch bobbled up, down, and all around.  He reminded me of my brother’s childhood parakeet, Perky.  How they flex their necks so steeply to reach the soft feathers that form a collar of fluff I’ll never know.  Such a curious, skittish, carefree creation indeed.  Then in a matter of a few seconds, they all flew away . . .

I was alone again.  Maybe I could try to move my head and adjust the comforter covering my chilled shoulders?  Yes, that’s good.  But to move my legs and arms was not to be just yet as my attempt to do so triggered another mini seizure attack episode.  Sigh.  I thought I would be recovering by now.  Not so.  Oh well, when my husband comes back I’ll ask him to bring me the lunch I had made myself earlier and put into the frig in case we were to go out on our tandem outrigger canoe this afternoon.  What a nice treat I thought it would be to have something made ahead of time that fit my special diet and tasted yummy too.  Not quite.  Gratefully it wasn’t too long before he returned to check on me, brought me the container of rice paper finger sandwiches and fed me several bites, one by one.  Then he put the bicycle water bottle to my mouth so I could sip some water and wash down the food sticking to my throat as I lain sideways on the bed.  A few bites, a long sip, a few bites, a long sip.  He has this routine down pretty well by now.  Thankfully these complete neurological collapse episodes only happen every 10 days lately.  They used to be every couple days . . .

In time my strength returned and I was able to put a pillow under my own head and feed myself.  Unfortunately something triggered a major seizure jolt when my beloved returned, setting me back again for awhile.  He was sitting close to me and I suddenly needed some fresh air from outside the window.  Stevers obliged then left me alone again to recover per our routine for these sort of things.  Again I revived.  Eventually I was able to weakly get out of bed and start to put on some clothes.  That’s a nice thing to do after a shower at 2 in the afternoon.  I was feeling a little funny lying there naked rolled up in the comforter.  Oh well.  It’s the best I could do after beginning to collapse in the shower an hour earlier, struggling to dry myself off, and Steve helping me lie down as it appeared I would be falling over any moment.  Flash forward almost two hours as the episode was resolving I was grateful to be able to move my left arm again.  Looks like I would be o.k. albeit shaken for several more hours anyways . . .

Sitting outside in the sunshine helped me regain my strength.  Of course I had another one of my low oxalate snack concoctions (white chocolate!) and a refill of cool water in my trusty Summit City Bicycles and Fitness water bottle.  Little did the guys at the shop know how helpful that bottle had become when I needed a special flow-control mouthpiece to refresh me when in bed, not on the Fort Wayne River Greenway!  Maybe someday soon I’ll get back on my bike.  I am grateful to have had a test run of two miles earlier this Spring; I should be able to repeat a short ride on a better Saturday afternoon really soon, Lord willing.  How hard could it be to peddle a few miles?  Well anyways sitting outside on our patio later this afternoon with pretty gardens all around me and the sun still shining brightly overhead did me a world of good.  The puffy white clouds still filled the sky and I could hear sparrows, robins, and more in the distance.  I got up to pluck a few weeds, pick a few radishes, tinker here and there before returning into the house.  Perhaps my beloved would understand that this day would be better spent at home than paddling on a lake somewhere?  Change of plans.  Enduring these kinds of afternoons together makes it obvious what we should do, more than words can ever say . . .

The rest of the day was decent as I prepared a nice dinner and some food for tomorrow in case we are able to reschedule our outing on the water together.  I do try to be hopeful, eh?  As most Gentle Readers would recognize in this blog we tend to live our lives over here a bit spontaneously:  making plans more at the last minute, in the afternoon or evening, and after checking the weather report/Julie’s snack supply/whatever we can reschedule to be able to get away . . .

This evening?  Not so nice.  We are just not sure what is going on with these wretched evening episodes again.  After a full year of 1-3 hour episodes virtually every night after dark and up to 30 minutes most mornings, you would think one of these specialists I’ve seen would have figured it out!  Yes, my melatonin level is off the chart and melatonin levels change at night.  I am getting out in the sunshine just about every day, exercising at night, avoiding foods with tryptophan (that tends to elevate melatonin) and more per my internet research on the subject yet the excess must be persisting.  (Labs to follow!)  Then my new biotoxin doctor laid a good one on me yesterday, saying that if anyone could figure out what to do IT WOULD BE ME SINCE I KNOW MY SITUATION THE BEST.  Whaaaat?  Why do you think I pursued your clinic out of State?  I was hoping YOU could figure it out!  Even my brilliant functional medicine doctor in addition to your brilliant functional medicine colleague have largely set me adrift.  Now you are saying since I cannot tolerate Dr. Shoemaker’s biotoxin protocol that you cannot help me either?  If you think I was able to figure this out would I be calling you?  Geez oh man.  Lord, come what may . . .

Back to the story of the bird in the hand is worth two in the bush OR wait a minute:  there aren’t any birds here right now since it’s after 4 in the morning!  Yes, I’m back to my late night schedule again.  Let’s see . . .  perhaps Luke 12 can remind me that just as the Lord provided me a sweet distraction of His delightful creation in my time of distress, He cares for me and for Steve in our times of distress too.  He has provided for our needs despite the incredible expenses, sustained us during multiple special events when extraordinary measures were needed to keep me as safe as possible, and granted me the time and space to get well when I cannot work.  I am grateful for my incredibly loving husband, a pretty home and gardens to enjoy when I cannot go out, and sparing of my abilities to think take care of my basic needs.  Sometimes I need to wait for the Lord’s timing on some of these things which is o.k. too.  I have learned to appreciate blessings in smaller packages with gratitude as they present themselves each day . . .

So I choose to take to heart His statement, His promise to care for all of the details of my life.  He knows all about what is happening over here and desires for me to be courageous, not afraid.  He has laid it on my heart that He has a plan and a future for my life (Jeremiah 29:11) and that nothing will separate me from Him or His will (Romans 8:38).  I get this.  Perhaps it’s why I don’t spend as much time crying anymore when the wretchedness comes.  Instead I’ll say,

Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.  Romans 5 (ESV)

With the lightness of heart shown to me by my Creator God this afternoon in my time of need, I’ll take the last word of the paragraphs granted by His grace and noted above:

This new day will come anyways, and no matter what may come or others may say, I will find a way to play with lightness of heart in celebration of the One who goes before me and will never go away!

Thank you Jesus for your Word, for your gift of words.  Thank you for helping me get through that to which you have called me and should any good shine through may it be for your glory Lord.  If it is your will I ask for your healing mercies and a time of blessing.  I lift up my husband (Steve), and my brother (Mike) too for your anointing and blessing.  If there is anything hindering our walk with You, please guide us, restore us through your Holy Spirit so that we may delight in sweet fellowship with you all of our days.

In Jesus’ name I pray.  Amen.

HouseSparrow

The Sequel: Same story different day

Don’t you just love a good movie?  The kind where you cannot predict the end until it ends or one where you find out what happened to the characters from the first of the series?  Yes, everyone loves a good story with a happy ending.  As for me, I’m just glad for happy moments!

I decided that it was time to update my video log of the most challenging aspects of the illness I am battling.  Included in my “sequel” are some photos of happy moments and some notes meant to be of encouragement at the end of the story.  Overall I admit that it’s kind of tough to watch.  Sometimes my beloved, Steve, and I (in our attempts to cope with this daily saga) get into a numbing routine where I go off into a back bedroom for a wretched episode then he comes by later to check on me.  I’m safe in bed:  I won’t fall out or anything like that.  He prays as he endures the horrifying vocalizations echoing throughout the house, knowing that there is virtually nothing he can do to lessen the burden.  We simply ride it out until the next one comes along, whenever that may be.

Gratefully we have discovered some things that consistently trigger the seizure-attack episodes or make them worse.  We don’t do these things where possible!  I mean that with nine gatherings last week in celebration of two weddings it was pretty tough to eliminate all extraneous factors.  We did our best.  I made it through five events relatively o.k., was Skyped into another, left two early, skipped a reception, and was carried away from the second to last event after the introduction of the happy newlyweds.  Not bad for a massively ramped up schedule and for someone battling Chronic Inflammatory Response Syndrome.  Or is it Lyme disease?  Biotoxin illness?  Non-epileptic seizures?  No one really knows for sure.

So here it is.  No popcorn needed.  A tissue might be worthwhile.  All prayers are welcome.  I am looking forward to the day when this illness is resolved.  In the meantime I stand on the Rock of my salvation, trusting in my Lord and Savior Jesus Christ to go with me and deliver me in due time.  One day in this life or in heaven, I WILL BE FREE.  It’s the promise in which all of us who call upon the name of the Lord can rest.  Thank you Jesus for your amazing grace.

Time for a nap!  J

The Burger on the Bathroom Floor

Sometimes there’s a bride carried in the front door at the same time there’s another bride carried out the back door . . .

Hi there.  My name is Julie and I have a wacky life.  Not that my life has ever been boring, mind you.  Lots of difficult things have kept me on my toes (or on my knees before the Lord) for a good portion of my days on this earth.  I used to say it was like cooking with all of the burners on the stove cranked up to the highest setting.  Then there was this network marketing book entitled, Mach 1 with your hair on fire that described things pretty well for me too.  Helen Keller wrote in her book The Open Door, “Life is either a daring adventure or nothing at all.”  O.K.  You get the picture.  There is no rest for the weary so get over it, get on with it, and better get right with Jesus to see you through!

So what’s up with the burger on the bathroom floor, you ask?  Balancing my blood sugar is a key part of managing this crazy biotoxin illness that came on the heels of Lyme disease that came in through the backdoor of fibromyalgia many years ago.  Actually hypoglycemia came first followed by hypothyroidism, fibro, yada, yada, yada.  This all requires me to carry a protein snack and water with me virtually everywhere I go.  Popcorn doesn’t cut it very long.  I cheat sometimes with fatty veggie chips when grocery shopping only to follow-up with a chunk of lunchmeat from one of those ziplock bags from the deli counter usually at a stoplight when driving home.  Whatever.  Who needs a knife and fork anyways?

Dressed up for the wedding of my husband’s son yesterday and our friends’ son today, I opted for the bigger black leather purse (to match my shoes of course and the only other purse I own).  I could stash a butternut squash coconut muffin, some coconut cream, and a burger-lettuce roll-up secured in a Ziploc baggie in there and look like all of the rest of the women with maybe a little extra, er, baggage, if you know what I mean.  Who would know that I could survive an invasion of body snatchers for at least a day with no more than a twinge of hunger when it was all over?  I would be ready.  Unfortunately I did not plan on a wardrobe malfunction (a term coined in the USA after an egregious moment by Janet Jackson during the Super Bowl Half Time Show a few years ago.  I won’t go into it here).  Or rather a leather purse malfunction.  I barely made it through my own snafu with my dignity!

The D.J.s were cranking up the music at the Light Guard Armory to add some ambiance to the large plain, cinder-block walled room with metal doors pained beige to match and linoleum flooring that had been waxed for more years than I have seen the light of day.  The host families had done their best to decorate the place with table adornments inspired by nature and set up a simple, yet respectable snack table for later munching.  I knew I probably wouldn’t be able to eat any of it (can you say M&Ms and Reeses Pieces for dessert?) so I settled into the scene comfortable with the stash in my purse.  Surely the burger was o.k. unrefrigerated for a couple of hours.  The only problem was that I was getting very hungry!

What’s a gal to do waiting with all of the other guests for the wedding party to arrive, dressed up in her Sunday best with low blood sugar looming and a burger in her purse?  Well I learned a long time ago that if you need a moment of solace you can always escape to the bathroom.  No one usually questions your actions in there!  It’s a little different story, however, if you are a gal since gals tend to chat while tinkling, primping, washing their hands, and adjusting their bra straps not necessarily in that order! How do you fit in whipping out a burger in your purse?  Answer:  you don’t.

The next level of defense is to squirrel away in a bathroom stall, quietly unwrap the nourishment of choice, and snatch a few bites while crouched between the open areas on either side of the door.  If someone “accidentally” sees you wiping your fanny through the crack by the hinge it’s o.k. but eating in there?  EWWWWWW!  No way!  But who really cares anyways if you haven’t used the toilet just moments before and the place is clean.  I mean my hands were clean.  Oh yes, and one must make sure that no one else has camped there in the past hour either, if you know what I mean!  Once you have your sequencing down, you can hide your medical self care in this way if you so choose just like a diabetic might do the same when administering insulin in a public place.  Sometimes it’s just better to take care of it in the one private place to which you can always retreat.

I did not count on what happened next.  I was one large bite from finishing my life-giving, 1/2 burger wrapped in Romaine lettuce with a wedge of coconut spread when the burger went tumbling onto the floor.  Oh my goodness!  Not my precious sustenance!  Suddenly I became acutely aware of how really wrong it is to bring food into a bathroom.  Then trying to eat it there even in secret no longer seemed like a good idea.  Years of preserving my sense of social graces came to a screeeeeeching halt!  There’s a burger rolling on the bathroom floor and it came from my direction! 

Of course I did not count on what happened next either.  Just then I heard what seemed like a gaggle of women entering the restroom.  Holy crap!  (Pun might be intended here.)  In a flash I made a dash to pick up the chunk o’ meat, rinse it off in the sink, hide it in my hand, murmur something like, “excuse me my stuff is in there,” and retreat back into the stall with whatever style and grace I could preserve in my moment of horror.  How could I ever have explained a burger rolling on the floor?  Never mind.  Nothing came to mind.  I stuffed the once delectable beef/bison griller into the open piece of Saran wrap in my purse and zipped it closed.  Snack time was over.  I would have to survive on the bites consumed thus far.  I thought I would be o.k. with that so I walked “looking normal” out of the stall to wash my hands then leave.  The two unsuspecting witnesses left with their curious glances, having never stopped their conversation during their porcelain activities.  Cool beans.  I was now in the clear and free to leave as well.

Sigh.  Some things in life are strange at times.  You just gotta do what you gotta do and laugh about it if you possibly can.  Gentle Reader:  the next time you grab a burger off the grill try not to think of me munching somewhere in a bathroom stall, k?  It just might change your appetite a bit.  If you do try adding some more spicy mustard and you will be fine.  I promise.  JJ

burger-cartoon-vector-graphic_1334753008057

 

Biotoxin illness not Lyme disease for me

As of yesterday and my second appointment with a biotoxin illness specialist, my hunt for healing will focus on biotoxin illness and not Lyme disease.  Perhaps you noticed awhile back that I changed the name of this blog?  Join me in finding “Hope Beyond” the challenges of today; for me this blog will always give the praise and glory to the Lord, Jesus Christ when victory comes . . .

I found a remarkable video on You Tube that summarizes mold and biotoxin illness.  Please look beyond the promo for his colleague’s book and his mentioning of “ME” or Myalgic Encephalomyelitis.  I do not have ME although I understand that biotoxin illness and ME are similar, much like fibromyalgia and chronic fatigue syndrome have similar manifestations.  Now that my diagnosis is clearer, I will be largely following the treatment protocol of Dr. Richie Shoemaker at:  http://www.survivingmold.com as coached by one of his trained physicians.

See whatcha think and let me know in the comments below.  There is hope!  Just Julie