Don’t you just love a good movie? The kind where you cannot predict the end until it ends or one where you find out what happened to the characters from the first of the series? Yes, everyone loves a good story with a happy ending. As for me, I’m just glad for happy moments!
I decided that it was time to update my video log of the most challenging aspects of the illness I am battling. Included in my “sequel” are some photos of happy moments and some notes meant to be of encouragement at the end of the story. Overall I admit that it’s kind of tough to watch. Sometimes my beloved, Steve, and I (in our attempts to cope with this daily saga) get into a numbing routine where I go off into a back bedroom for a wretched episode then he comes by later to check on me. I’m safe in bed: I won’t fall out or anything like that. He prays as he endures the horrifying vocalizations echoing throughout the house, knowing that there is virtually nothing he can do to lessen the burden. We simply ride it out until the next one comes along, whenever that may be.
Gratefully we have discovered some things that consistently trigger the seizure-attack episodes or make them worse. We don’t do these things where possible! I mean that with nine gatherings last week in celebration of two weddings it was pretty tough to eliminate all extraneous factors. We did our best. I made it through five events relatively o.k., was Skyped into another, left two early, skipped a reception, and was carried away from the second to last event after the introduction of the happy newlyweds. Not bad for a massively ramped up schedule and for someone battling Chronic Inflammatory Response Syndrome. Or is it Lyme disease? Biotoxin illness? Non-epileptic seizures? No one really knows for sure.
So here it is. No popcorn needed. A tissue might be worthwhile. All prayers are welcome. I am looking forward to the day when this illness is resolved. In the meantime I stand on the Rock of my salvation, trusting in my Lord and Savior Jesus Christ to go with me and deliver me in due time. One day in this life or in heaven, I WILL BE FREE. It’s the promise in which all of us who call upon the name of the Lord can rest. Thank you Jesus for your amazing grace.
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
I 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.
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.