I have been asked to write about my worst experience with MCS– I’m not sure I can go there– because maybe I don’t want to be judged– I sure as hell don’t want to be mocked– BUT– I prayed about this & God assured me I need to share this– as I didn’t go through it to not learn compassion & learn to give HOPE– to everyone who has any form of MCS– so here it comes dead straight from my heart–
Several years ago Gary & I had an INN SITTING BUSINESS– what is that– well we had owned lodging– & knew you could not find anyone to take over your business so you could escape– so we started an Inn sitting business where we would go in & take over– & the owners could walk out & leave their business with us & for what ever reason– for a few days or a few weeks– well — we went to Cripple Creek Colo to an Inn– & they had new carpet– new drapes– new bedspreads– new paint– the biggest toxic chemical mess in the world– & enough formaldehyde in that place to embalm a small city!! Needless to say I didn’t last long– & Gary loaded me up in the car & drove like hell all the way back to our home in Kansas– I thought I would get better– but I didn’t– the chemicals affected my nervous system –OK– I could not breathe– my throat was almost totally swollen shut-my eyes were almost totally swollen shut– brain fog– rash my skin looked like I had a birth mark over all of it– as I was bleeding under my skin– I was swollen up like a big toad– ALL MCS symptoms- you have ever read about– BUT– for the very first time– the chemicals affected my total nervous system– I could not sit– lay down– wear clothes– have anything touch me-could not take a shower– wash my hair– and I could not keep anything inside of me– I could not eat– all I did was drink water– then the PANIC ATTACKS STARTED– the worst I have ever experienced in my life– it was like riding a bucking horse — a terrible mad violent bucking horse– you thought this horse will finally get tired & stop this– but if the attacks stopped it was only for that damned horse to get it’s breath & go again– & I could not breathe it was like I could see my self as a gold-fish who had jumped out of the fish bowl & could no longer breathe without water– & riding a bucking horse at the same time– All who know me well- know I’m very independent & bullheaded & if I make up my mind to do something –I very well can damned do it–BUT– now- I was not in control of any action of my body & I was lost– me who is always in control– could not control these panic attacks!! And I had all other MCS symptoms you have ever read about & heart pumping– etc- etc etc– & I can’t keep anything in my system– I can’t lay down– I can’t rest– I can’t sleep–I can’t eat–
I had a health professional say– we have got to get her to the hospital– so we went– & they had NO PROTOCOL for anyone with MCS– they took samples of me– & then as I heard some one in the next room say– she is going to die– I said to Gary get me out of here– & he did — from the tests we found my body was feeding on it’s self– & I had water toxicity– from only drinking water-as it was all I could keep inside of me- also still having panic attacks sooooo bad– I really wanted to die– this had gone on for many- many -many days now– & I prayed that night for God to please -please– take me–or get me to some real help– And it must not have been my time to go– as God sent me to Dr Ed McKenzie in Holton, Ks. it was a real struggle to get clothes on– & sit in a car & close the door– & ride from our home in Cottonwood Falls, Ks. to Holton, Ks.– Doc Ed was a friendly face– I don’t remember any thing he said to me– EXCEPT– when he took my hand & looked me in the eyes & said– You are going to get better— OH MY GOSH— HOPE– HOPE -HOPE- the first time anyone had given me HOPE!! I got my mind around that– HOPE– those damned panic attacks– I can ride them– I can make it!!!! Doc sent home Standard Process Complete with us & said– mix this & at first just try a tablespoon full & see if you can keep it in you– so every hour or so I took a tablespoon of natural healthy Standard Process Complete– & it finally stayed in me–I lived in our rocking chair for weeks– & weeks– when I wasn’t pacing the floor & riding out those damned panic attacks!!! I finally got in my mind– go ahead & buck & I’ll spur ya– now give me all ya got & lets get it over with– & I would ride that wave of panic attacks!! I finally saw HOPE in Gary’s eyes when I could keep something inside of me– & I could talk in some form of a sentence by placing more then 2 words together– & could dress myself– when he said– we need to go to see Dr Ed today– I think we went every other day maybe every day– for weeks– then months–
I remember some time– Gary had an old people stool in our shower– & asked if I wanted to try getting clean– some point– I remember being able to let water hit my skin with out it feeling like a million hot coals burning me–& sitting off more panic attacks– I remember some time I was even able to put my head in the kitchen sink & let water hit my head– no shampoo– could not take any thing but water on my head same as no soap or chemicals when I took a shower–
I remember when I finally tried to eat a cracker this was after weeks & weeks -& weeks- & only a crumb & it tasted so bad– as I had not had any other nourishment in me except Standard Process Complete for maybe several months!!
We removed every single scented thing from our home at that time– we took out every single chemical– I sprayed Vinegar in the house in a spray bottle to neutralize any other smells– I did that in the car to be able to go to the doctor’s office–
And I journaled to keep my mind– I wrote notebook– after notebook– as I could still not put together a complete sentence– in talking!! I would write– rock in that rocking chair– & pace & ride out those damned panic attacks– & write Gary notes as I still could not put the words together to come out to make sense in talking!!
Gary for the first time in our married life had to take care of me instead of me always taking care of him–& he had to take on responsibility he had never ever done in our marriage before– & I could see he was scared to death most of the time– & I could not talk or have enough strength in me at that time to give him any HOPE as it took all the HOPE I had to just make it minute by minute in my own life!!
I was soooooo sick for sooooooo long– it is now a blur– it is a dark hole– that I won’t let myself get sucked into ever again in my life– I will never ever let myself be exposed to all those chemicals– I will always keep a “safe home” & I’ll fight for my chemical free “safe home”– as it is all I have to protect myself– it is my only safe place in this world– And I won’t let people in my safe home ever again that have chemicals on them–
When Gary & I travel we travel in our RV our safe home on wheels!!
I have kept all those journals I wrote for weeks & months– but I have never ever gone back to reread them– WAY TOOOOOOO DARK OF A PLACE— Praise God I can’t even remember it all!!
When people say– what makes you think you are an expert on MCS to help other people–
WELL I HAVE LIVED WITH MCS IN ONE FORM OR ANOTHER FOR OVER 50 YEARS-
AND I HAVE BEEN IN A HELL HOLE– FROM MCS– THAT I NEVER EVER WANT ANYONE ELSE TO BE IN– – & IF SOMEONE HAD NOT HAVE GIVEN ME “HOPE”– I WOULD NOT BE HERE!!! I remember the first day I was able to laugh again–
(There are tears are hitting my key board as it write this)– all I can say is IF I HAD NOT KNOWN JESUS CHRIST AS MY LORD & SAVIOR — I COULD NOT HAVE MADE IT!!!
( Thank you JESUS- & Thank you Dr. Ed McKenzie — & Thank you Ed Pope for letting God use you- to lead me -to Jesus Christ as my Lord & Savior & thank you Gary Bruce for loving me & being my best half .) I love ya all!!!
It is still very hard when people have NO FRICK’EN CLUE WHAT MCS IS– or how it can try to control our life– & how many people continue to use all the toxic chemicals & fragrances that are killing ALL OF US!!!!!!!!!!!!