The times inbetween

Tis a time for more resting than doing

And it is unusual for me to give into the slower pace

But give in I must.

The rain garden project awaits an instructor’s touch

While our own landscape decides if bushes or an Amilsh “mini garage”

Will grace the outer banks of our bedroom.

Shall I attempt to rip out the red twig dogwoods,

My fav in garden beds here and the ‘burbs of Chicago

That don’t really like their sunny home but delight the view out the bedroom window til late summer?

The dog days of hot weather have sapped my zest for projects, most anything green

Or maybe it’s from having to stay home when hubby got to go without me

To his National paddling competition afar; yeah I was too tired to even go.

Yeah, I’m kinda down about all the failures these past 2 months —

Alas the Lord spoke to my heart; now maybe they shall give rise to something better for me?

The times in between the hills n valleys can bring a fresh new look

If I but heed the call to slow things down a bit, to rest

There are but a few tic zips here and there so I do believe something is going right at last!

Thank you Lord for seeing me through to this day

For allowing me to pass through the fiery tests, the times of despair, and hopelessness too

I may even get to go paddle locally tomorrow with my beloved River Bear.  Now won’t that just be saweet if I do?  JJ

No Place to Go

Steve pic of A Lori stuff 7.27.18

This morning as I watched my gracious husband take pictures of the items a family member had claimed were stolen, I realized I had no other place to go.

Who would understand the betrayal after having suffered a severe health setback trying to care?

Who would understand that every level of commitment virtually every day this entire year would end with them throwing my heart against a brick wall?

Who would know the many levels of loss that continue as I seek treatment to get my body back to baseline again?

Who would understand that grieving this failure, this dead end would rekindle the sorrow from heartaches in the not-so-distant past as well?

How does that come to any kind of closure when your heart is crying, your thoughts are heavy, your body is aching, your world is smaller, and there are piles of things to do around you?

There is only one place to go:  to the One Who grieves for my pain, Who grieved tears of living blood for the sorrows of us all:  more than I will ever know.

My Savior, Jesus Christ, faced ridicule, betrayal, torture, and unjust punishment that cost Him His life so that I may be free one day of lesser losses that come with this life.

Just gotta lie at the foot of His cross for as long as it takes until the burdens are lighter, so that I may go on even better somehow.

My joy is tiny today.  My Jesus is bigger than life itself.

Jesus, take the wheel.

JJ

Hosting a guest while practicing extreme mold avoidance procedures

If you have the energy to do it, it is possible to host a guest while practicing extreme mold avoidance procedures.  This process also includes avoiding noxious exposures such as fragrances in scented products and clothing plus anything else we could identify that could potentially hurt me.  I took this project on because I was doing fairly well after some new treatment this year and the health of an extended family member was failing.  While ultimately our family member was unable to stay with us, we believe we had done everything possible to make this trial visit work.  This blog post will begin to summarize the procedures we felt were most important; here’s my first “brain dump” of all that transpired these past few months.

Before Your Guest Arrives

We were preparing to leave for a week and camp in a travel trailer so the preparations for this trip that would end in picking up our elderly family member were already huge for anyone travelling cross-country.  When you camp you prepare:  food and clothing, supplies, campground reservations, rental of a larger truck with enough space in which to bring home our family member, a basic itinerary for the week, notification of credit card companies that we would be travelling, and the like.  I mention these tasks to exemplify how you, the host, must have all of your ducks in order before the visit is to begin.  We had a gaggle of ducks to line up!  Having your act together is equally true if only one of you is travelling as you come together.

Preparations in the home are extensive

  • Bathroom accessibility equipment for the safety of our guest.
  • Home cleaned so we have a clean, stable environment from which to begin our time together; there would be no time to clean once the visit started and our family member was getting settled, we were learning her routines and she was learning ours.
  • Bedroom prepared for her belongings:  an organizer in the closet (helpful if there is no space in a dresser), removal or sale of non-essential items (for us this included an antique sewing machine and an extra mattress), and some welcoming decor.
  • Place vinyl allergy covers over the mattress and over each pillow, underneath the bed linens.
  • Bath towels, personal products, and a change of clothing ready to go for her first shower upon arrival, knowing that in our case we would be getting home late after a full day of travel.  Your guest could be a little nervous and need some direction in your new environment, new routines.  Plan to be available that first hour or so.
  • Food for the first meals readily available or prepared and frozen; there could be very little time to shop or begin to figure out everyone’s dietary needs on day one when we all had to rest and unpack from two full days of travelling.  We rarely do fast food!
  • Accommodation of personal requests if possible:  clothing items to be “soft,” memory foam bed topper in the travel trailer AND the bedroom (on two different sizes of mattresses!), extra bottles of purified water and a water bottle she could fill herself, and, most importantly, a plan for how to handle her personal items safely that she would need to use right away.
  • All host bills paid and up-to-date, plenty of pet food and paper products available to delay shopping right away, our personal medications and supplements replenished, and home in general order, for example, no mail spilling over into her place setting at the kitchen table!  With our personal lives in order, we were ready for anything — well, almost!

Help the guest follow home avoidance procedures right away

  • Practice avoidance procedures as he or she is packing to leave his or her place of residence.  (More on this one below.)  Begin orientation to the new environment and procedures before you leave to provide repetition and aid compliance.  Expect breakdowns as this is hard stuff, totally new, and takes time-and-repetition to learn.
  • Be clear on what can and cannot come into your home.  We did not have any of our family member’s personal belongings come into the home the first two days.  This created tremendous stress for her as she had to set up her medications and supplements at a work station in the garage, have 2 sets of foot coverings (i.e. new and specially cleaned slippers for inside the house and her specially cleaned shoes for trips away from the house in the vehicle together).  We are grateful she generally complied yet there were breakdowns each day.  Finally we placed her specially cleaned bottles in double-freezer-bags in a remote closet.
  • When it was clear as we got on the road that my Aunt was struggling to organize her medications and supplements, we shopped online while still driving home for a new, weekly pill box with large compartments.  Once we set up the pill box (whilst sitting outside on a patio of course), this largely resolved the issue of opening bottles inside our home.
  • Purchase and specially clean NEW SETS OF CLOTHING that can be ready from that first shower through the next couple of days.  We never really know how many washings it will take to remove sizing and fragrances from clothing so this must be done in advance.  Your guest will not likely help pay for the cost of this accommodation.  This expense is for your safety.  I had to hang several items outside in the sun to rid them of the last bit of fragrance; this would have never worked if she was already here.  What would she wear in the meantime?
  • If possible, begin the special washing of your guest’s clothing in a laundry mat away from your home.  We washed all of her clothing for the 3-week trial visit with 1) fragrance-free detergent/fabric softeners and ammonia then 2) vinegar.  Some folks use borax with detergent.  While this did not remove all of the offending toxins completely, starting the laundry process away from home reduced the risk of contaminating our washer and dryer for further laundering at home.  This procedure would not work if your guest’s washer and dryer are in a water damaged building or if there is a history of highly fragranced products like GAIN detergent.  I hate the smell of that stuff!
  • Your guest cannot wear your clothing or use your personal items such as borrowing the use of a hair brush.  I had to sacrifice all clothing of mine that our family member wore; she either kept it or it was discarded when she left our home.  (I simply had not purchased enough clothing to meet all of her needs when things did not go as planned including some of the new items that turned out to be the wrong size!)  In the end, she had 6 sets of new clothing as follows: 2 pairs of slippers (travel trailer + home), 1 pair of water/summer shoes, 1 fleece jacket, one summer wrap, 6 pairs of underwear, 4 bralettes, 5 pairs of socks, 1 fuzzy robe, 1 pair of flannel pajamas, and 5 outfits.  Everything went with her when she had to return home.  Somehow, the Lord provided her needs.
  • Set up a travel bag of unscented personal products that most closely match that which your guest likes to use but meets your sensitivity requirements.  Having a personal set of toiletries aids compliance.  He or she cannot bring into your home items in which all surfaces cannot be cleaned; these items need to be replaced or their use deferred until later in the transition.  In the end I ended up purchasing or giving my Aunt a  soft toothbrush, similar type of toothpaste as she used at home, floss, hair brush, comb, travel hair dryer, facial/body cleanser, body puff, shampoo and conditioner, body lotion, and deodorant.  I added some of these items later when I realized what I forgot/she didn’t mention them or they GOT LEFT BEHIND in a campground bathroom that first stressful night of travelling!  Expensive mistake!
  • Have available to your guest their snacks, drinks, and favorite foods so that he or she can become independent as soon as possible in the little things.  I needed to prepare all meals since it was unwise to have our family member using the stove so any help in-between meals was very helpful.

If you must travel with your guest and follow avoidance procedures

  • Plan for an extra level of work and effort!  We travel with our meals and snacks prepared in advance and rarely eat fast food or take the time to eat in a restaurant when on the road.  This was new for my Aunt.  We ended up having longer and more frequent stops as a result, making for very long travel days.  Since our family member had considerable stress regarding her diet, I decided to make her a personal cooler of food and drinks each of the two days of travel.  This significantly added to my work load yet served to make her more independent.  This idea could also work at home if you have to be away for the day:  set up a lunch box or plate in the frig if he or she cannot perform the meal prep independently.

    Some of these procedures may not apply to you and your loved ones.  I hope that your guest can take care of his or her own needs so that you can focus on your own.  If he or she is willing to help with any of these procedures or take care of him/herself then you will have a tremendous blessing.  Our family member was sick with a serious medical condition and needed assistance from a caregiver.  No one else was helping her and we could not stand by to witness her continuing to fail without trying to help.  What we didn’t realize was that:  1) all of these procedures would provide daily structure to help her function better and 2) some of her problems came from living in a water-damaged condo! 

    All of her belongings were contaminated and worsening her medical condition manifest in cognitive, behavioral, emotional, and physical decline.  She would begin to detox during her time with us; her level of functioning would improve dramatically within that first day travelling then living in a clean environment of the travel trailer and our home.  Even if a person appears “healthy,” we have no idea the exposures that they will bring with them when they enter our home.  Have they had water damage at home that developed into mold?  At work?  Has he or she a toxin load from pesticides/herbicides or other chemicals that will begin to detox once living in a pristine environment?  We simply cannot see the mycotoxins and chemicals that can create sickness for any of us.  These elements may be of little to no consequence for hosts and hostesses who are healthy.  What happens when that gift of hospitality meets Chronic Inflammatory Response Syndrome or Multiple Chemical Sensitivity?  You just might not want to go forward with having someone in your home.  And yes, this information could benefit more than just those with CIRS or MCS:  your guest could leave with the gift of restored health.  Awesome.  But what about you?

  • Each hotel room or travel trailer serves as a “mobile clean room.”  We don’t sit on any furniture until we have showered and changed clothing, quarantined all clothing from the day in a covered, plastic bin.  (Managing hotel rooms when dealing with CIRS/MCS is another topic that I have endured but will cover in another blog post.  One tip:  ask for a room that was not recently cleaned!  Then it won’t smell as bad from cleaners and air fresheners.)  Purses and wallets, etc. that cannot be wiped down remain in the locked vehicle.  We found that showering in campgrounds with newer bathrooms to be less stressful for compliance than the tiny bathroom and spaces of a travel trailer.  Soiled clothing is temporarily placed in plastic bags until it can be transported to the laundry plastic bin; discard the plastic bag.
  • Changes of clothing and toiletries must be ready to go before a day of travelling begins.  Similarly, a set of clothing and (quickly wiped down) toiletries must be prepared and put in place at home so everyone can shower and change clothing right away.
  • Any items used during travel such as pillows, blankets, jackets must stay in the vehicle until they can be cleaned at home.  They are considered to be contaminated from exposures on the road, public bathrooms, spaces for those of us most sensitive to these kinds of exposures.
  • Carry all medications and supplements for the day with you in your travel cooler so you don’t have to go back-and-forth into the travel trailer, luggage or storage areas.
  • Personal items and clothing are transported in containers that can be cleaned (not luggage; luggage is made with porous materials plus the multiple layers of its construction can harbor toxins which we cannot fully clean).  Single-ply cloth bags that can be laundered can work for clean, fragrance-free personal items.  My Aunt’s leather purse had to stay in a large plastic bag in outside storage during travel then in her staging area in the garage at home.  She was amazingly o.k. with these procedures, albeit stressed by them initially!

When your guest unexpectedly starts to detox in your clean living environment

  • The extent of this phenomenon was the most shocking experience of having a family member come stay with us.  She was now in a pristine environment with regular healthy meals, better hydration and medication compliance, restorative sleep, and less stress with family around to love and care for her.  She showered every day but continued to have a strong, noxious body scent.  Her body knew what to do and appeared to be using her skin to begin a detox process.  As a result, I began reacting negatively to this scent!  Immediately we double-laundered her pajamas, robe, and bed linens.  I did the best I could to help her as her primary caregiver while recovering myself after two long days of travel.  Will you have anyone to help you in case you encounter this phenomenon?
  • We decided not to have our guest attempt to bring any of her personal items from her condo into our home.  Our original plan was to re-launder her clothing from her condo so she could have more options but this was not to be.  I would not be handling any of her personal items (even with a mask and gloves on) that were still safely stored in our garage nor bringing any more of them into our home.  My husband would have to help her to go through bills and such outside on the back patio then have everyone wash up/change clothes afterward.
  • We asked her to shower twice per day but she simply could not, would not do this.  We questioned if she was changing both under-and-outer clothing with each shower which would be essential to dealing with this detox reaction.  I began to react to just sitting to her at our kitchen table with the windows open behind her!  My threshold for reactivity was plummeting.  A crisis was brewing.  What would you do?  You have worked extremely hard to make things work but things were not working!  Your guest is far from home.  Is there a backup plan?  For us there were family members participating in discussion but not in problem-solving action.  Tough situation indeed.
  • Keep the bedroom doors closed:  yours and the door to your guest’s room.  Turn up air purifiers in the home (as I hope that most of you reading this already have at least one!).
  • Start interim cleaning as able, especially in the bathroom and public places.  Make sure the floors are clean as well to help prevent your tracking stuff into your bedroom retreat.  All shoes are left near-or-outside the door to the home, garage.
  • As the person with CIRS/MCS, you must do whatever it takes to stabilize your health should it start to decline with a guest in your home.  I wore a charcoal mask when outside of our bedroom and kept as many windows open as possible despite the weather outside.  I took rescue remedies as able and made sure to keep up my fluid and nutritional intake.  I let my family member and others know what was going on, without blame, and spent less time with her unless it was outside.  I decided not to take her with me in the car for our safety, to prevent a bad reaction when I was driving or in a public place.  (She was not available to drive during this trip.)
  • We enlisted the help of other family members and friends.  My Aunt was able to attend a group meeting with a neighbor which provided some much-needed respite for me.

Initial remediation if your guest who started to detox has to leave

  • Send him or her home with a “care package” that includes all of the items that you purchased or loaned during his or her stay.
  • Give him or her any bed linens, towels, and any porous materials that he or she used OR DISCARD THEM.  If you are reacting to this person and his or her artifacts then why risk a chance exposure in the future?  Or contaminating your washer and dryer?  I became sensitized to her person and any amount of residual toxin in our home would have impeded my recovery process.  Fabrics are porous and I wonder if we can ever really clean them completely.  Yes, this gets really expensive.  Staying sick is even more expensive, eh?
  • Wear extensive personal protection equipment if you are the one to begin the remediation process:  an industrial mask (charcoal mask or at least an N95 one if you do not have it) rubber or disposable gloves, old clothing that you can wash  multiple times or discard, and a plan to shower completely then clean your shower are tips that come to mind.  Better yet, have someone else clean your home with your instructions!
  • Use your best mold cleaning product that you have been able to tolerate.  Some use Benefact or other products; we use a 1:8 ammonia-to-water solution.  Do not use bleach!  Clean every hard surface in his/her bedroom and throughout the home and allow to thoroughly dry.  Don’t forget the floors!  Consider cleaning highly exposed surfaces (such as the vinyl allergy cover on the mattress and pillows) twice.  Open the windows if the outside air is safe.
  • Develop a plan to clean upholstered furniture that suits your experience, situation.  Have you been able to wipe clean, vacuum, re-wipe upholstered furniture in the past or did you have to replace them?  It’s not worth losing the love of your significant other who has endured this crisis with you if you disagree on these remediation procedures.  You can also set any item out in the sun for a few days and see if it helps.
  • Stay away from the trash bin/dumpster where you have discarded items if at all possible.  If in a home, consider cleaning the can with the same solution used above, after the contents are hauled away on trash day.
  • Open the windows.  Some folks like to use essential oils to help sanitize the air in a living space.  I place some drops of tea tree oil on a cotton pad and place it in the room with the door closed to neutralize any residual, offensive odors.
  • Carpeting has no clear answers.  We opted for hard floors when I first was diagnosed with CIRS/MCS.  Sprinkling carpeting with baking soda then vacumming and repeating a few times may help.
  • Sanitize all surfaces in the bathroom.  Replace the shower curtain liner.
  • Consider ozonating the bedroom, car, or home as appropriate if able to do so.

As you will read in the blog post referenced above, the combination of our extensive preparation, procedures, and emergency interventions were not enough for us to continue to have our beloved family member in our home.  I went through a grieving process while still very sick as she was preparing to leave.  We all learned a lot and have no regrets for trying to make this arrangement work.  I expected success.  It was not to be.  She is now in the care of her friends and family that will be taking over her caregiver responsibilities for the foreseeable future while I recover from a terrible  setback.

Gratefully, I am recovering more with each passing day.  That’s the beauty of extreme avoidance procedures isn’t it?  It does help to restore our health really well in the beginning of a detox process and later on when we face a setback.  It doesn’t solve everything yet extreme mold avoidance is a powerful tool.  This test of having a guest in our home was worth it to give my Aunt the gift of renewed health.  I also hope that these tips and our experience helps you if you are considering helping someone.  Please let me know if you do, k?  JJ

 

 

I’m still here

A brief update:

A second trip is now behind me to see my Craniomandibular Specialist in a southern state and the problems plaguing me for 6 1/2 long years are significantly less and yet my progress has plateaued.  Maybe it’s still the fatigue of travelling alone for the first time in 11 years?  Holy cow, I did it!  And ugh too.  It was hard.   Regrouping and resting now, changing up a few things, and I am noticing that those changes are already helping, for example, to  reduce the daily headaches to a trace level.  Amazing!

I am tempted to be discouraged about the plateau in progress and some setbacks but I will choose not to be so.  Both happen in the jagged line of recovery from serious illness.

Life goes on and the care of a family member in that same southern state began before the first medical trip.  Looks like the Lord had more planned than we originally thought when my hubby and I took a leap of faith to seek treatment 1,000 miles away from Indiana!  We are now preparing to welcome my Aunt into our home for 2 months this summer after many hours of preparation, work, and communication with multiple parties.  There is much to do!

Seems that the Lord wants me to keep moving forward as he has created a new role for me with increasing responsibilities:  caregiver.  I never thought that it would be harder to care for one tiny lady than the TWENTY I served in a day in my professional role as an Occupational Therapist.  Right now it is!

My Doctor’s office cancelling 7 medical appointments already this year due to chaotic scheduling issues confirmed my pursuit of a new integrative medicine specialist.  My Doc is upset and I am proceeding to transition some of my care to her anyways.  The change is refreshing and creates hope in some areas not addressed of late.

Steve and I have several decisions to make should my family member decide to move in with us later this year after her summer visit.  Some parts of our life could accommodate her easily, others not so much.  We will have some financial decisions to make involving vehicles, housing, and several lifestyle choices.  Could be good?  We are exploring many options and leaning on the Lord as we go . . .

I am a bit overwhelmed with the new modalities that have come since pursuing specialized Temporal Mandibular Disorder treatment, from application of a TENS unit to switching out dental appliances every time I eat or sleep.  Wonder where I have been instead of writing updates on the Hope Beyond blog?  I am still here, flossing my teeth 4 times per day!  Spitting mouthwash into a baggie in my truck after eating between appointments when away from home is not that unusual for me now . . . from the back of the parking lot where no one can see me of course!  Oh my!

The biggest change of late is having a bit more energy and mental capacity to do a little more a few days per week.  I am exceedingly grateful for this.  Thank you Lord!  We anticipate a lot of changes, projects, and the need for both physical and mental stamina this coming year and looks like it is coming little by little.   I hope the finances for everything will follow as my Go Fund Me campaign has also plateaued!  We will figure it out, so no worries.  The first of the two medical trips is now covered, gratefully.  God is good and the Great Provider has always cared for our needs.  I can see a possibility of working some within a year a so depending upon the needs of our “new” family member; she may move in with us permanently or choose to live closer to her adult children in Michigan.  Just not sure yet.

I am tired.  Healing takes sooooo much energy from healthy food and rest, good supplements, time with the Lord, and restoration activities with my beloved Stevers.  Sunday was my birthday so we did that last one.  A simple day was a great gift with my bestest buddy.  I love him so much.  I am so very glad that you are still here too.  I could never have made it today without you Babe.  Thank you Jesus for Steve.  Please bless him this week and encourage him as he works so hard for both of us.  Infuse him with your Spirit to lead us through this maze of life in which we bumble along.  Help me to love him, respect him better and better too.

woman, birthday cake, birthday, carrot cake, celebration, lunch, with husband, Christian, woman kissing cake, table by the window, lake view

Carrot cake was my birthday treat at the Oakwood Resort on Lake Wauwasee

I know that the Lord has gone before me and been with me, drawing me to Himself and bringing me to the moments He planned for me yesterday, today, and tomorrow.  I lay everything named here in your mighty hands as I prepare to go to sleep.  I know that You are still here too.

And on that promise all of us here may rest.  You too.  Godspeed Gentle Reader, JJ

 

Move freely, heal well my dear

 

dancing

The importance of moving

Cannot be understated

The body not the soul,

One’s frame sans the stuff.

Blood flows, lymph drains

Breath deepens, waste can leave

If only we help it with

A little muscle contraction against gravity.

[So easy for her to say to me today!]

I cried in fear

As physical therapy began

I’d been here before

And knew about the score.

But wretched seizures

Met me by each session’s end

My body erased

The good that had ensued.

It could be different

Now that the beast is tamed

Perhaps give way to healing

And actually doing my home exercises?

Ah what a delight that will be

I do see it coming out there

Can almost reach it, so sweet

This is the beginning of healing!

Just had to mourn

Seven years lost since

The time I moved with ease

When no fear waited in every corner.

[Sigh.]

Today marked a new beginning

This time appears to be for real

Thank you my Jesus, for carrying me through

Time to give in to freedom as the healing is now here!

JJ