We’re home from our whirlwind trip to Florida that almost didn’t happen so soon after being diagnosed with new gut issues then battling the flu followed by it’s aftermath for 2 weeks thereafter. We did it anyways! Four long days of driving for 3 days in the Sunshine State. Here was our itinerary:
4:00 pm January 9th decide to pursue reservations and plans to go to Florida; finish seemingly endless packing, food and other preparations.
2:00 pm January 10th: Elle pup is the first in the truck as we depart Huntertown, IN for the campground south of Atlanta. Arrive around 2:00 am.
1:00 pm January 11th depart for Seminole, Florida. Arrive around Midnight. Set up our campsite at Bickers RV Park.
9:00 am January 12th was Steve’s first day of the USCA Annual Meeting. I rested from various convulsive episodes en route and travelling.
6:00 pm we make our way to the banquet at a seaside restaurant. Had episodes later yet I was grateful for a dinner out with my beloved Steve.
8:30 am January 13th: Steve heads out for the wrap up of the USCA Meeting, lunch, and paddling 6-man outrigger canoes on the ocean. Great fun!
11:00 am My day begins with self care, laundry, doggie care and some time sitting outside. Some restoration begins, however convulsive episodes persist at night. Make pre-planned dinner anyways and prepare for appointment tomorrow.
10:00 am Appointment with Craniomandibular Specialist, Dr. Ralph Garcia, for adjustments to dental appliances. Begin to question where the 80% improvements of last year have gone? Drop off thank you gift to a friend, lots of driving in the Tampa area, and fit in a 45-minute walk along Clearwater Beach before returning to the campground. Even 60 degree weather could not keep us away! Episodes were discouraging to both of us later that night.
11:30 am Pack up and depart for Chattanooga, TN. Arrive after midnight. My Nissan Frontier is a workhorse yet requires stops for gas every 110 miles! Elle pup made the entire trip nicely.
1:30 pm Pack up and re-winterize Camplite for our return to freezing temps back home. Depart for Huntertown, IN by way of Nashville.
3:30 pm EST meet up with Steve’s sweet daughter, Rebekah, for early dinner. Ramp up of convulsive episode at older Thai restaurant prompted me to leave, scramble to the truck, and take some Prednisone. Episode resolved (meds prevented further episodes later on this night), so we head to Panera Bread across the street for a nice visit. Got back on the road around 6:00 pm.
3:00 am arrive home and start unhooking the travel trailer, unpacking, decontamination procedures, urgent laundry. Grateful for the ability to do all this work on a short night of sleep followed by long days of travelling. The Lord added His increase once again!
5:30 am: heading for bed with prayers of gratitude for safe travels, the Lord’s provision of this trip, some sweet moments, and fewer symptoms between us of the flu/cold that began 3 weeks ago. I’ll spend the next week cleaning the Camplite, doing laundry, restocking, and reorganizing as required when camping in our “mobile clean room.” Maybe I’ll get to finish 2 sewing projects for the bunks soon too?
How amazing it is that I got to go to Florida! “Warm sunshine” is very therapeutic as is getting a change of scenery. Yeah God! I love travelling with my Stevers. My heart is filling back up again . . .
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
They should be alright after about a week in the heat, right? Ugh.
Usually when “the bus driver” and I come home from a camping trip, we empty the travel trailer of all food that very night. Of course it may be 3 in the morning but it all comes out nonetheless. Not this time. This time was very different. The unopened bags of chips are still in the storage compartment underneath the bed and we have been home for SIX DAYS! Gratefully the ants on the driveway have not found them yet!
I really don’t know where to begin to tell the story of our attempt to bring a family member here from out of State to visit, to maybe live with us. This was a huge undertaking for all three of us: a journey that began over 6 months ago that was actually cancelled the first time around. Perhaps it will be best to unpack the situation in a few blog posts over time as I begin to recover from what was largely a failure. But there is good news: my Aunt is healthier, stronger, more mentally sharp, conversant, happier, and overall functioning significantly better than when my hubby, Steve, and I picked her up in Florida 8 days ago. As for me, not so much.
Last night was one of the most horrific scenes of recent memory. After a total of 12 hours finally getting some errands done with a late night Doctor appointment too, I had the most frightening convulsive episode imaginable. My threshold of reactivity had been plummeting with each passing day that my Aunt was travelling or living with us. We had taken extreme mold avoidance procedures and she was wearing all new clothing that I had specially prepared for her. Her belongings from Florida were cleaned and secured in plastic storage bins in our garage; only doubly-freezer-bagged supplements and medication were in the house in a remote closet. She lived in an inadequately maintained and moldy living environment laden with the fragrances that most women like. We took extreme measures with her stuff but never considered the detoxing of her body to be the toxin most noxious to me; her skin scent reflected several different problems beyond hygiene and no amount of bathing or washing of linens/clothing was helping me fast enough. I crashed fast. She, on the other hand, (in our very clean and climate-controlled home with exceedingly healthy meals, rest, and loved ones nearby) quickly regained skills and energies she had lost in the past year.
I was unpacking groceries from our local Meier when an odd feeling hit me. The warning signs that I learned to recognize in the past when at my sickest with this complex/biotoxin illness had changed. The odd symptoms ramped up so quickly into involuntary full-body shaking episodes that I barely had a time to get to a safe position to prevent injury. These kinds of episodes are very dangerous! So I was standing in front of a counter filled with plastic bags of groceries when my eyes drew in to close and all I could do was kind of lean-and-cling to the edge of the refrigerator as the convulsions began. They went on and on for at least 20 minutes until my husband would discover me and carry me to the bedroom. The repetitive oscillations injured my spine from one end to the other. I could not move my body and was terrified of falling. Trying to relieve the cramp in my right calf triggered a rebound, a worsening of the episode. I just held on . . .
Things were no better once lying down. The involuntary shaking traumatized my neck and my body temperature began to drop. I could not speak when I needed to and breathing was difficult. Time either stood still or passed along quickly, I have no idea which one. I couldn’t even cry out my angst until much later. Then the visual anomalies began of swirling shadowy circles on the ceiling of our bedroom. Steve left and returned a couple of times as he tried to help figure out just what caused this and more importantly, what to do to make it stop. He sniffed my clothing and found them to be musty. That discovery pointed to my hours trying to get special requests for everyone at the grocery store — a water-damaged building that was problematic for me before their remodeling. I guess it is still a problem! My Beloved removed my soiled clothing and the amplitude of the shakes lessened. But by then the weird, demonic-like writhing and vocalizations had already begun. It is terrifying to endure this hell. I prayed for the Lord to take me. I searched for the white lights but did not find any. Three hours went by before I could function again . . . what was left of me, that is.
Repeated biotoxin exposures had lowered my threshold of reactivity. I was at the lowest point, last night, after doing significantly better these past 5 months. Looking back it all makes sense: cumulative exposures began when helping my Aunt for five hours on each of two days to do laundry and then pack for this trip in her moldy State of Florida. It rains there every day now and she has had water damage in her condo several times without remediation. I wore a charcoal mask during our time there but the conditions were still unbearable. (Even Steve agreed and had some symptoms.) Have you ever had to wear a mask in 90 degree heat and humidity while doing physical and emotionally exhausting work? I had a stress rash on my chest, at least 12 irritated mosquito bites, soreness from dental adjustments from my Craniomandibular Specialist in town, and to deal with a cognitively impaired and severely anxious family member who still struggles in facing her brain disease. The process was exceedingly painful, frustrating, exhausting.
In another post I will outline the procedures that we used to attempt to implement extreme mold avoidance to be able to care for a family member in crisis. We simply could not leave her in Florida any longer. For today, I am grateful that I did survive last night because I got to see a miracle in action. No, it’s not only the organic lime corn chips that are alright tonight. I am completely exhausted yet stable and have not had any episodes since she left our home around 10:00 p.m. (and I cleaned, tossed bed linens and other things out of course). This is the first time I have been stable in 4 nights. The miracle is that when I was able to get out of bed at 5:00 p.m., my Aunt’s friend from Michigan had arrived and was sitting with her on our patio outside. Well hello Dean! He was offering to drive her back home to Florida. While I disagree with many aspects of this arrangement, I was in no position to decline a solution that could help stabilize me: her now former caregiver in crisis. She left with him after some dinner, some packing, some very sad goodbyes. Our visit wasn’t supposed to end this way!
Looks like the chips and me are going to be fine in a little while (as the bags are still out there in the Camplite in the driveway). Steve is grateful for the possibility of a full night of sleep. We shall recover. I am grieved that things didn’t work out with my family member and for the torture I had to endure trying to care for her. I am glad that we could give her the gift of renewed health; that I discovered where I am at with this ongoing illness; and that our Lord is there to carry us, to act, to make His presence known no matter how hot things get in our lives. Please join me in praying for my Aunt. Dean won’t be staying with her very long and . . . I had to let her go from our care.