It Takes Time: My Wife Is Crazy!

Thankfully my beloved Steve never said this to me.  I wondered it myself many times though!

Check out this husband’s perspective  on mold and how it can affect your life.  You may search the words “mold” and “biotin illness” for more on this topic from Hope Beyond.

And hang in there fellow sojourner.  Praise the Lord that I am getting well!  JJ

http://moldrecovery.blogspot.com/2012/05/my-wife-is-crazy.html?m=1#.VmdYd4SFbzJ

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 Nurse Who Wore Perfume

 

Nurse Ratchet from One Flew Over the Cuckoo's Nest
Nurse Ratchet from One Flew Over the Cuckoo’s Nest

After about 4 hours breathing fresh oxygen being pumped with fluids, I revived after a most bizarre episode.  The Benedryl made things worse yet brought about 12 hours of slumber on and off into the next day.  Whew!  What an ordeal it was . . .

Such is life when battling biotoxin illness, multiple chemical sensitivity, mycotoxicosis, Chronic Inflammatory Response Syndrome, or what-is-formerly-known-for-me-as Chronic Lyme Disease.  On Saturday I was counting the dollars and quarters from the neighborhood girls who bought friendship bracelets at our garage sale.  I noticed a familiar perfume scent on the money that reminded me of a houseguest not long ago.  Perhaps it was Flora by Gucci again?  Anyways, no sooner had I zip-locked everything into a sandwich baggie when I started to feel sickly.  Bizarre and violent seizures followed, ramping up and ramping down over the next hour.  Holy crap!

I knew I had overdone things somewhat working the garage sale and doing some yard work the day before.  But hey, we had some things to get rid of and were delighted to pass some items along for free.  The girls who bought the bracelets were adorable!  I couldn’t resist letting my initial Trinity Jewelry by Design originals go for 1/6 the original asking price just to see the smiles on their faces.  Of course the older sister next door would need and extra one for her sister who was away at a dance competition so 2-for-1 would be the best deal for her.  Same thing applied to her sister’s best friend who was in the midst of a little object lesson about not taking money from her mother’s purse to buy bracelets!  Lesson was learned and we had smiles all around.  I was so delighted to send them along and tell them the significance of the 3-bead design (for the Father, Son, and Holy Spirit!).  They looked down at their bracelets like they were hearing it for the first time.  That’s cool.  As they wear them each day I pray that the Lord brings more promptings of His love and gift of salvation through the Holy Trinity.

It’s Monday, I am breathing better today, and I feel reasonably stable.  The windows have remained closed as every-other neighbor seemed to be getting their lawns treated today with fertilizer and pre-emergent weed killers.  Ah the scents of Spring!  All fragrances don’t seem to bother me but I am not taking any chances one day after an imaginary trip to the ER.  Imaginary?  Oh sure, it’s all in my head you see.  They gave me a repeat psychiatric diagnosis probably leftover from the last time I was there over a year ago.  It didn’t matter that my biotoxin medical doctor from Michigan graciously called the hospital on my behalf with an update.  Chronic Inflammatory Response Syndrome just isn’t on their radar.  The ER Doc seemed to give the impression that he was understanding that the difficulty breathing, obvious seizure attacks, and intolerance to the cold hands of the admitting nurse were related to CIRS.  It has its own ICD-9 code don’t you know?  I guess they do not.  Out came the “non-epileptic seizures” and “feeling nervous” diagnoses.  I never said I was feeling nervous!  The third diagnosis was “tremors.”  Yeah, tremors that make your head bang aren’t really tremors are they?

Non-epileptic seizures have TWO causes:  1)  biological and 2) psychiatric.  Most medical professionals ignore the first cause.  If they were psychiatric they would happen only when I am under stress or have a need for secondary gain (like attention or control).  Sorry Doc.  These episodes happen unannounced, unprovoked, and at happy times.  They started with an exposure to a cyanobacteria when kayaking in a local reservoir with my beloved and some fun people.  I love my life with Steve and in general.  I am so blessed and grateful for so much even during this time of illness.  Armchair psychiatry without a work-up is wrong.  Test me.  I have nothing to hide.  So frustrating.

Shortly before the completion of the IV fluid and Benadryl treatment, a nurse came into the room to announce that the nursing shift had changed.  She checked the monitor and recorded my vitals before leaving the room in a puff of noxious and cheap perfume.  WHAAAAT?  Why do you think I am in the EMERGENCY ROOM NURSEEEE POO?  When she returned I gently but firmly asked her to leave and not return due to the same.  She said she had received “report” and knew why I was there.  HELLO?  ANYBODY HOME?  Two other nurses came in a bit later and before the IV pump alarm was set to go off (another sensory trigger).  I appreciated their timing and thanked them.  A bit roughly they disconnected the IV, removed the IV in my arm, and began to hurry us along.  Time to go!  I had to ask them to wait a moment as my body started seizing from the shock of the needle coming out of my arm.  Hey, it happens every time a needle goes in or out don’t you know? I really can’t make this stuff up don’t you know?  It simply isn’t worth it and would take too much energy anyways.  Just look at the outpatient records from the 21 IV magnesium treatments at that same hospital this past October and November.  Same reaction.

I felt numb on the way home.  My incredible husband made sure I was settled and quickly got outside to mow the lawn before dark.  I ate a light dinner as fast as I could to gain some strength before giving into the incredible fatigue.  Tic attacks woke me up several times as I slept for about a half of a day total.  The ordeal was over.  My third trip to the ER since becoming ill October 11, 2011 was over.

What do I do now, I wonder?  I mean there are binding agents that I can’t tolerate (chlolestyramine and Welchol) and one that I can (activated charcoal) tolerate but the latter doesn’t register on Dr. Richie Shoemaker’s biotoxin illness protocol.  During a wretched episode earlier last week the Lord gave me some insight that the activated charcoal might work better for me.   So a few grains of AC is all I am doing for treatment in addition to my own election for a mold-free, Candida, low oxalate diet.  Oh yes, and our home will become a safe-zone to reduce exposures.  Sadly there will be no more monthly home group.  I spent the last one in my bedroom with seizure attacks while the group worshipped, prayed, and fellowshipped in our living room.  Even the hint of fragrance amongst them was too much for me.  Sigh.  I  need the fellowship Lord!  And what about the friends and family who will be in town for my husband’s son’s wedding next month?  This is a heartache for both of us right now.  I love Steve’s adult children and his family.  I am grateful for them.  I guess I’ll be Skyped into the bridal shower . . .  And I doubt that I will be able to enjoy playing hostess to family that has not seen our home beautified since they were last here for our wedding 7 years ago.  It’s just so very risky.  Maybe it will be warm enough to visit on our lovely patio.  Hope so.

Oh well.  We’ll figure out something.  We always do.  Better leave that one for a future blog.  More prayer is needed before then fer shur.  JJ

My Story in Brief

Here’s a brief overview of my wacky journey to date, written for another blogger.  I’m hanging tough as this time of illness continues, leaning on the Lord and witnessing His grace in my life every day.  I have so much for which to be grateful!  You too?  :J

First Name: Julie
Age:  53
Gender:  Female
Where do you live?  Fort Wayne, Indiana

When/Where do you suspect that you contracted Lyme?  My doctor suggested it as a possibility in January of 2012.  He’s a family practice physician and chiropractor.

When did you first begin to feel ill or start to notice strange symptoms?   I have had fibromyalgia since 1992 in addition to some thyroid and female/hormonal issues.  Regardless, I was the fittest I had ever been in my life when I became extremely ill with viral hepatitis in October of 2011, after kayaking in a local reservoir.  When was unable to recover as time passed, my LLMD suggested underlying Lyme and that I read about mold illness too.

What were they?  The worst symptoms included:  ongoing nausea, increased muscle pain and headaches, decreased activity tolerance, worsened ringing in my ears, back pain, lightheadedness, extreme fatigue, fractionated sleep, and genital, stomach,  and dental pain.

How many doctors did you see before reaching an accurate diagnosis?  If you start from the fibromyalgia diagnosis in 1992, the number would be around 60 including chiropractors and a naturopathic physician.  If you start with October of 2011, it would be 2:  the emergency room NP and my LLMD.

Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what?   It’s unclear if the myriad of health issues over the past two decades are related to Lyme Disease or not.  I started treating for Lyme (first with antibiotics then a Rife machine; supplements too) after confirmation of the diagnosis from biomeridian or electro-dermal testing in January of 2012.  A year later we discovered that we had mold in our home and remediated our entire home.  I had a significant history of mold exposure in a work setting about 6 years earlier and a genetic disposition that favored mold illness more than Lyme disease.  Another year later and currently, a systemic yeast infection (level 3 of 4 levels) has taken center stage in my course of treatment.  The treatment of Candida has been as difficult as that for Lyme or mold!

What are the main symptoms that you experience currently?   Virtually every day I feel like I have the flu, experience muscle and joint pain, endure headaches/neck headaches, and battle weakness and fatigue.  The other symptoms noted above persist as well.

The WORST SYMPTOM by far is that of seizure-like episodes!  The first episode happened one month after the onset of viral hepatitis.  Then I had no episodes until I began treating for Lyme disease with the Rife machine and after the initial trial course of 5 weeks of antibiotics.  Seizure attack episodes thus began around April of 2012 and have gradually worsened since then:  generally up to 4 hours per day!  If I did not have a personal relationship with the Lord, Jesus Christ, I would not be able to endure this personal hell. 

What does your treatment regimen look like?   I can no longer tolerate virtually all of the supplements or compounded medications for Lyme or mold illness without the seizure attacks escalating into convulsions!  I have maintained an increasingly and very strict Candida and mold-free diet for the past year.  Treatment focuses on Candida (rotating anti-fungal meds. & supplements as tolerated); I am no longer able to tolerate the compounded medications of Dr. Shoemaker’s protocol for Chronic Inflammatory Response Syndrome (www.survivingmold.com)


How much do your symptoms prevent you from living a normal life? 
My life is severely restricted to chemical/fragrance-and-mold-free environments and settings void of loud music and bright lights.  I have not attended our church in about 8 months as it is a water-damaged building.  Physical deconditioning restricts former activities including kayaking, bicycling, walking and gardening.  I am grateful for the occasional exceptions and was able to maintain some raised bed gardens this past year.  Yeah God!  Travelling is particularly difficult and severely exacerbates seizure attack episodes no matter what precautions we try!  After 30 years as an occupational therapist, including adapting my career with various events of my life, I have not been able to work in 2 years.  I miss working!

What do you like to do in your free time and how is this different than before you were sick?   As tolerated, I blog in the middle of the night at:  http://www.justjuliewrites.com on topics incorporating my faith in God and hoping to encourage others with my story of recovery from chronic illness.  I am grateful to have published an eBook this past October entitled:  Hope Beyond Lyme:  The First Year   In August of 2012, I started making macramé hemp jewelry to keep myself sane; today I am grateful to offer jewelry from two missionary organizations helping families at risk.  A donation will be made to Ianna House (a residence for persons with Lyme Disease) for all Lyme disease awareness items purchased at:  Trinity Jewelry by Design.


What do you want people to know about Lyme?   
Examine carefully and journal your symptoms (response to treatment, etc.), do online research especially at http://www.ilads.org including vector-borne co-infections, join online Lyme forums, do  IGenex testing (www.igenex.com), find an experienced Lyme AND mold literate physician (s), and consider several treatment options as you begin this long journey to healing.

What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme?   I don’t know how anyone can recover from this difficult illness without two things:  1) the love, care, and support of other people in your life and 2) faith in the Lord, Jesus Christ who loves you, sees your suffering, grieves with you, and will carry you through the ups and downs of this difficult journey.  He is our true source of hope!  When struggling with hours of seizures at night, He meets me there every time and comforts my weary heart, my weary soul, my weary frame.  Sharing my faith with you is my reassurance that this experience won’t be wasted!  I welcome your thoughts and would love to meet you, Gentle Reader, through my blog (www.justjuliewrites.com) or on Facebook at:  Hope Beyond Lyme.  Take care, Julie