Six years ago tonight began a journey that has tested me in every way possible; brought me closer to my Lord and Savior, Jesus Christ, than ever before; deepened my love and gratitude for my beloved Steve; and helped me to grasp the incredible resilience of the human body/human spirit. Thank you Lord for your sustaining grace through it all!
Rather than go into the details, I will simply refer you, Gentle Reader, to my story here. Briefly, I got deathly sick with viral hepatitis after kayaking in a local reservoir and never fully recovered. Seizure attack episodes began on a daily basis within a couple of months and have yet to resolve. This serious illness has had many names, required extensive treatments at considerable expense, and rendered me unable to work in my profession of occupational therapy. I miss working. The social isolation, sense of loss, grief, and various disabilities have changed my daily life considerably. Without my faith in Christ I would not have made it this far. I do have hope for a better tomorrow which brings me to my quarterly treatment update as follows:
Recent lab tests found extremely high pesticide toxicity. I immediately increased Far Infrared Sauna and various detox treatments until I could meet with my functional medicine Doctor. Now after two intense weeks of exhausting research, medical appointments, and enough follow-up that would make the great T.V. detective Colombo proud, I am hoping that my Doctor’s office has processed a referral to a State Toxicology Center. I found a neurologist that specializes in seizures related to toxicity and I want to see her as soon as possible!
In the meantime, I try to function as best as I can. Sadly the very difficult titration of a new medication either keeps me up most nights or wakes me up with breakthrough tic attacks every two hours. (I still spend most weekends in and out of bed with sickness.) The focus now is to inhibit acetylcholine that we hypothesize is causing the seizures because of damage from organophosphate poisoning (OP). Acute treatments for OP are well known but not for long term effects; we simply do not know how long I have had this toxicity. The medication is an interim measure. I am wondering if various Lyme, fungal, viral, and even parasitic infections have sequestered OP like these organisms can do with other toxic agents. We know that detoxification can increase feelings of sickness called “herxing” (from release and recirculation of mycotoxins for example) when we either detox too fast or our liver or kidney pathways are blocked. I now use bitter herbs with various binding agents in a “push-catch” protocol that helps to better tolerate the process.
So here we go again with another new treatment direction! At least this time I have concrete lab values to help explain what is going on along with a new, promising treatment direction. In the meantime I’ll be hanging out as the “chick in the box” (as Steve says) at about 124 or more degrees, trying to literally “sweat it out” in our sauna. There will be no anniversary celebration per se for enduring six years of hell albeit with some sweet moments sprinkled in here and there. There will be humility though as I try to be a godly steward of this journey my Lord has entrusted to my care. I do have hope for a better tomorrow. That is where this blog began 6 months into this 6-year journey and I hope that is where I will remain beyond that too.
Thank you for sharing the road with me Gentle Reader. When I see my stats ticker go up a notch my spirit gets a little lighter, knowing you are there. Thank you.
Enjoy the sweetness and reality of warmer weather throughout the United States and beyond from fellow blogger and friend, Sherri! Looky here for more on this subject. JJ
Each spring brings a new awareness to life. As my body adjusts to the weather and becomes more alive without pain, I enjoy hearing the birds sing as they do their morning chores. Of course, I sit with a cup of tea these days on the chaise lounge brought home from our cottage and listen…
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