What a date we had tonight.
Dinner: Parkview Hospital 24-hour grill.
Movie: HGTV on the ER Suite flat screen.
Drinks: Bottled beverages and 1114 cc fluids for me.
And a whole lot of shaking going on: 3 hours of seizure attacks, non-stop.
It’s as I have heard it said that life is either a daring adventure or nothing at all.
I am feeling much better now. I love IV fluids! (Weird, I know.)
We are sleepy!
Here’s a brief update on my brother, Michael, and me with a prayer request:
At this moment Mike is moving from an acute, inpatient rehabilitation facility to one of the lowest-rated nursing homes in the city of Detroit. The social workers claim that of the 35 facilities they have contacted, St. Francis is the only one who would accept him. The reason? He is “Medicaid Pending” and does not have any other insurance. We are sad and concerned.
Today Mike’s rehabilitation stops until Medicaid is approved. Today Mike learns how the indigent of our society are left behind in facilities located across the street from an abandoned buildings in scary neighborhoods. Today Mike decides whether or not he is a FIGHTER. I only got to talk to him briefly before the transport vehicle came to wheel him out of his private room and begin the next leg of his recovery journey. He has made tremendous gains in cognition, swallowing, self care, transferring from one seat to another, and even walking. Mike has had close monitoring of his medical condition, medications, and test results. The plan to address a complex cyst on a kidney remains unclear as he moves away from his rehabilitation and medical specialists. None of them go to the new facility. It is unlikely that he will receive any rehabilitation therapies from this point forward until his Medicaid is approved. We are sad and concerned.
We are hoping that this transfer is a move sideways and not the beginning of a downward slide. At this point I do not believe that he knows that he will be receiving fewer services. He is concerned about the facility location and the comfort level of his fiancé visiting him in an unsafe neighborhood. Gratefully our cousin, Lisa, is an optometrist who sees patients there every 6 weeks. She has known the staff there for 10 years. We are hoping that this helps place Mike in a favorable light. Lisa has also offered to accompany Mike’s fiancé, also named Lisa, on her first visit to the new place. I am exceedingly grateful for this. I wish I could be there too. I cannot go at this time.
I had my own questionable “move” this past weekend. Difficulty breathing and bizarre, violent seizure attack episodes landed me in the emergency room. I received “treatment” and returned home; the last three days have been marginal yet better in some ways. I saw my family practice physician yesterday and was able to put together a few plans to tighten up my treatment plan. Unfortunately I had to escape outside for fresh air THREE TIMES due to the mold aerosols in his water-damaged office building! Did I mention that I was already wearing a charcoal mask? Geez. I was re-reading the Clinical Summary this morning from my visit and collapsed at the kitchen table into a pile of seizure-like tics. Perhaps the aerosols followed me home on the porous copy paper? Who knows. My gracious husband has seen me through it all, threw out the papers this morning and opened the bay windows to help me revive. Thank you my beloved Steve!
Sometimes it looks like things are going downhill when actually we have just stepped a little to the side. Many hidden blessings have come from my brother’s stroke: developing a closer relationship with his fiancé, rekindling a friendship with my amazing cousin Lisa, and seeing a few family members step forth to love on my brother are wonderful. And in my own situation I now have a biotoxin illness doctor who is willing to go to bat for me when headed to the ER on a Sunday in addition to an incredible husband who is my kinsman redeemer. Steve is willing to love me, care for me, and defend my special needs when needed on my journey to wellness. He believes me that this crap-ola-ski is NOT all in my head and is helping me overcome it too. In both my brother’s and my own situation, I am seeing new expressions of love that have not been there in our lives before. Cool beans. Thank you Jesus!
Gentle Reader, would you kindly pray this scripture with me? I pray that we will lean on the Lord, trust in the Lord, and have courage to move forward when-and-as the Lord leads these next few weeks. I need to rest in the tender care of my Jesus and not get ahead of the work He is accomplishing in today. After all, I do not want to miss the richness of His tender care, His presence in each breathing moment. Such a joy it is to know that He is here carrying Mike this afternoon in that transport van. Such a joy it is to know that He is here too with me and you carrying our thoughts and prayers to our Heavenly Father for His wise care according to His Divine plan for our lives. Perhaps sideways is a good place to be right now.
Want some bulletproof coffee? Let’s go out on the patio and sit for awhile. The sun is shining this afternoon and the narcissus, tulips, hyacinths, and buttercups are blooming!
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
Jesus is for the Wounded 
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