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

Not all goats can be my friend

goatimagesI finally figured out what kept me in neurotoxin distress for the better part of two days:  guyere goat cheese!  Turns out that this particular type of goat cheese is made with microbial rennet.   According to Wiki,

these molds are produced in a fermenter and then specially concentrated and purified to avoid contamination with unpleasant byproducts of the mold growth. At the present state of scientific research, governmental food safety organizations such as the European Food Safety Authority deny QPS (Qualified Presumption of Safety) status to enzymes produced especially by these molds.  The flavor and taste of cheeses produced with microbial rennets tend towards some bitterness, especially after longer maturation periods.[3]

Great.  Cheese that is unsafe in Europe is o.k. in the great United States of America.  I rarely ate goat cheese until I was put on a special diet to control “neuromuscular events.”  The first 3 weeks on this diet have been challenging due to limited and exotic food choices yet it appeared to be helping some.  Then consumption of guyere goat cheese put this mold sensitive gal with Lyme Disease in a neurological crisis for about 5 hours on Wednesday and another 5 hours on Thursday!  I know that I am sensitive to mold but had no idea that I should search for it and avoid it in food.  Lord have mercy!

Today was a recovery day, waking up because of a four-minute seizure attack, difficulty breathing, and a splitting headache in the middle of the night.  Or maybe I should say that after a lot more sleep, today was a recovery day.  Turns out I might not have turned off the wireless router correctly late last night.  Sometimes that bothers the symptoms of Lyme so we always turn it off at night.   I finally started feeling better around 4:30 p.m. after a good cry.  Gratefully my sister-in-law asked to chat on the phone and brought out the best in me; finally showered at 7:00 p.m.  Later I got to meet my husband’s son Daniel’s sweet date, Erin, and have my own date with my hubby to Office Depot and the post office.  This is huge, gang.  Running errands with my buddy is a treat lately . . .

I don’t really blame the goat for this setback.  That scrawny creature didn’t add mold to it’s milk for me to get sick on it.  Somebody out there probably loves microbial rennet.  I’m just frustrated.  Maybe tomorrow will be better.

He’s kinda cute in a way . . .

Maybe I don’t want to go to bed

peanutschristmascure74045_10151380532502386_87513810_nMaybe I don’t want to go to bed tonight.

If I go to bed, I might have seizure attacks and that is not fun.

If I go to bed and get up in time to do my morning treatment, I won’t have enough time to take a post-treatment nap before an appointment at noon.  Then I’ll probably want to rest after the appointment so my schedule is going to be messed up anyways.

But what if I stay up and get hungry again?  I don’t have enough protein already prepared to satisfy my hunger because this diet is just too weird.  For instance, I thought the son-of-the-owner-whose-been-cutting-meat-and-cheese-his-whole-life was going to laugh when I asked if they sold wild hog meat.  He smiled and said it was illegal to sell it in Indiana, just like it’s illegal to sell deer meat (aka venison).  Geez.  Wild hog on Amazon?  Yup, that’s what my Electrodiagnostic Naturopath told me to do.  She’s ordered alligator online before due to food allergies.  Alligator?

Is anyone else laughing in addition to me?  GEEZ!

So we had Cornish hens for Thanksgiving and I think there’s going to be a repeat menu of the little chickies for Christmas.  But for tomorrow, I’m a little stumped as to what to eat.  I guess I’m going to have to negotiate the pre-Christmas grocery store mania tomorrow after my after-appointment, post-treatment nap.  Could be fun, actually.  It will make me take a walk since I’ll have to park so far away from the store to get a parking spot!  Could be good.

Then again, maybe I will go to bed now.  Thanks for the chat.  It’s like I’m talking to Linus of the Peanuts comic strip.  And if I was talking to Snoopy, I know he’d understand too . . .  Goodnight.  :J