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hi everyone
you know i have been getting better and better. LGS and candida and bracing are ofcourse probelms for me, but over the last several years, sensitivity to chemicals has become the worst aspect of the issues...i guess i somehow slipped by that line of being a "universal reactor," as even five minutes in most stores and malls and movie theaters have become debilitating.
in spite of that, i have learned how to thrive...guess what-- you can live without ever seeing the inside of a retail establishment ! ;-) if i avoid places with strong triggers and if i stick to my program-- the PERFECT trigger-free macrobiotic diet; avoid intake of basically all manufactured things; do skilled relaxation at least twice per day; do a lot of exercise everyday; do yoga and chanting; have chinese tuina treatments; use my favorite meaningful music; and be happy and silly everyday AS MUCH AS POSSIBLE...if i do all this and more as i have been in the last several months, i am getting better...
this is not to say there arent undeniable very depressing aspects to this temporary way of living...those things still exist, having become a bleak part of the landscape (like greatly reduced social opportunites for the need of avoiding most indoor public venues or the lack of vitality evident in our appearance) but we have tried to find interests that fufill in other ways.
so we are doing well generally, but in the last twelve days, things have gone bad. i have not been able to sleep for more than 90 minutes consecutively. from what is happening, i can recognize that there seems to be a new potent kid on the intollerance block-- like having exhausted a new detox pathway (in the last few years we have learned everything we could about these issues mostly from drs. rogers and rea about sensitivity, signs/aymptoms of internal factors, phase one and phase two detox., the chemcial pathways and their support vitamins, minerals, enzymes, amino acids, the nutritional intake to manage them, and about the experience of thousands of others who are similar, etc...)
anyway, i think that chlorine is the immediate problem. ofcourse we know that vitamin B12 is key here and as dr rea says, b12's main siginificant source is GI flora...a big challenge for me anyway is proper nutrient levels, because i can find NO supplements that do not cause all sorts of other problems (~-> sensitivity to chemicals), so even if i knew of good sources of vitamins and minerals used in fighting hypochlorhydria, i wouldnt be able to take them...
i found yesterday that my father had brought into the house the likes of organic solvents and specifically hydrocarbon cleaners and left them in the basement. these would be the only such chemicals in the house (despite that my family thinks this entire thing is some kind of joke), so i removed them with great hope for withdrawing this trigger. certainly this would exacerbate a chlorine problem. As well, today i thought that my sister might have re-loacted freshly dry-cleaned clothes into a room next to where i sleep...1,1,1 tri CHLORO ethylene , dry cleaning fluid would make this a lot worse too, right...
i guess this is a rant, but i dont know how much of this i can take...i NEED SLEEP. and none of my usual tricks is working in the face of these symptoms...and i had come up with some TERRIBLY CREATIVE ways to induce sleep that had previously never failed...ofcourse keep in mind that teas, milk, and supplements induce the OPPOSITE Of sleep for me...
i slept outside-- or tried-- a few nights this week...but the problem remained. the only thing i can think of that i took with me outside would be whatever was in the water that the blankets/clothes had been washed in.
so how do i eliminate chlorine from washing water ? do those filters that are connected on the shower line fit the wash machine line ? is there another perhaps simple or not terribly expensive method of filtering the washing water ?
looking back at the week, i was in an environment that is usually ok for me (and i sit against a wide open window while i am there), but twoce this week, that environment was a problem...there was the odor of bleach, so i suspect the floor had been moped with CHLORINE bleach. i am thinkning a little there and a little from maybe the dry cleaned clothes and some from those cleaners my father lovingly imported and maybe a little in my cooking water (maybe filters failed? maybe more than usual was added at the water plant?) all added up to max out my already limited capacity to detox the chlorine outgasses from my room...and no sleep ?
when i get like that, i CRAVE not sugar or candy, but manufactured cookies and crackers...perhaps its the B complex my body wants ? ofcourse i dont do it...but i did try eating unbleaned enriched flour...this bourght other symptoms but i did sleep after it (for 90 minutes, until i awoke very pale of complexion, with tingling and jerking sensations and after severely violent and brutal nightmares-- at least they were creative !-- in a very depressed state, ready to cry, etc...on my way to megaloblastic madness ???? ;-(
i moved back home with my family when these problems became big enough to disrupt normal day to day activities. now i find that maybe this wasnt a great idea, bc of my family's careless attitude. my mother raves that i just need a medical check up to quell her most irrational fears..i could have an advanced brain tumor bc i have refused to see any more medical doctors in the last two years she says(we gave up after thousands of dollars wasted on about twelve of them)! and stuff like that...or that i should see a skin doctor for those patches of dark skin...or silly piece meal things like that...but they just miss the things like me getting dizzy when i stand over the kitchen sink or in a bathroom...hmmm gee, i wonder
buts thats ok, bc this is not about them, its about me...even if they make me irate with incessant ignorant and ill-conceived advice that they push as the ultimate solution.
i had been getting better and better as i say, with the goal of acrewing AGAIN thousands of dollars, but this time to give it to a knowing doctor with a more holisitic slant-- a clinical ecologist in nearby syracusemayb; maybe a trip to dallas for the EHC-- but things like this immediate crisis just knock the hell out of the plan. and now i really wonder how that could help, if there arent supplements or manufactured products that i can take without casuing problems, what could even a clinical ecologist tell me to do that i am not already familiar with -- diet and avoidance and so on ?
i think if i could just get away from chlorine i could at least band aid this immediate problem so i could move on...
I NEED SLEEP. i am looking around, but does anyone have anything about minimizing chlorine exposure ?
thank you for providing this space dr stoll. ;-)
In Reply to: getting better and better turns into severe immediate crisis posted by leon cavallo on May 25, 2001 at 15:57:42:
dude, do you really think that the mcs is the reason you arent sleeping?- ive found that good sleep is really the key to all these "disorders" i have cfs etc too. its your hypothalums/pituitary/adrenal axis that is screwing you up as you know its out of whack, probably pumping out adrenalin, cortisol etc when its not supposed to. ive gotten totally well and then gotten several relapses, i know how bitter that can be( im working out of a hole now after 2 years of being asymptomatic!!)im pissed, but im trying to cool down. i worked with a doc in pa- his name is gerald poesnecker 1 800 300 5168-he specializes in the adrenal aspect of cfs etc, he got me out of this current f!@#$%$$# hole im in. he has many tricks up his sleeve to make you sleep well , they are all safe. he will work over the phone with you and he is cheap( its a nonprofit place)good luck
In Reply to: Re: getting better and better turns into severe immediate crisis posted by jt on May 25, 2001 at 18:52:40:
super!
thanks for the insight into anothre point of view. i think we can take many differnt ones to get into and work out the variables that bother us. i will call this guy. glad that he helped u so much ! really, i am stoked that u took the time to share the contact info about him
thanks a lot
In Reply to: getting better and better turns into severe immediate crisis posted by leon cavallo on May 25, 2001 at 15:57:42:
I too used to react to any and all supplements. I am slowly getting better working with a Doctor locally that does integrated medicine. B12 is DEFINITELY an issue. I would reccomend that you find a Doctor that will work with you. I have been getting B12 shots and it has been helping. My Dr uses a special form of B12 that is preservative free. Let the Board know what part of the country you live in and maybe someone can recommend a Dr.
In Reply to: getting better and better turns into severe immediate crisis posted by leon cavallo on May 25, 2001 at 15:57:42:
Hi, Leon.
How long have you done the SR and how did you certify it's effectiveness? MCS is one of the worst problems I know of because the person gets to the place where he reacts to everything.
That is why it is SO important to recognize when things are going in that direction and do something about it before it becomes MCS!
Walt
In Reply to: Re: getting better and better turns into severe immediate crisis (Archive in MCS.) posted by Walt Stoll on May 27, 2001 at 10:13:10:
hi dr stoll
thanks for responding.
unfortunately i didnt find your site and book and approach until after the MCS developed. i have been doing SR since about last spring. we verified it in the first few months, but by the fall i wasnt doing it well enough. i went to rolfing which helped somewhat, but i couldnt get enough of it to get full benefits...
this is part of why i had been hoping to work back up to going to dallas or for comprehensive treatment in syracuse...but i also thought that holistic ayur vedic treatment to learn to turn off the sensitivity would be just as valid, though harder to learn
(neither here nor there, but, especially for those who might be interested... i had found the macrobiotic plan early on and have been following that for almost two and a half years. initially, this TURNED OFF all my symptoms but the worst two...but as dr rea observes, symtoms slowly build back and they have...but we are trying other appraoches now too and have been doing better, except for this latest issue...
and now for this, i have done a few effective things:
the first thing i did was check my notes from the rea manuals about what nutrients are used along the pathway to detox chlorine. B vitamins, like 12 especially, are most importatn...so i took a ton of them. this did cause other symptoms like balance problems/dizziness (something i had seen the last of several months ago), etc BUT i was able to sleep ! HOORAY !
then, i decided to look for things that also use the same pathway as chlorine for detox...to reduce the overall load on this pathway. i found that i was eating something that in essence competes with chlorine for detox: GINGER ! ofcourse i remembered right away that the effective macrobiotic appraoch forbids herbs but i had been using it as a part of an ayur vedic appraoch to stoke the digestive fire (works quite well for that !)...so no more ginger root consumption.
i also found that since i have been getting better, i can tollerate polyester, which, though outgassing its own nasty hydrocarbons, seems to retain almost NO chlorine from washing...
so, ok it is may, but i have used one blanket of polyester and the furnace to heat my room and that allowed me to sleep !
since then i have found that cotton that goes through the dryer retains much less chlorine to outgass than cotton that has been hung outside to dry...so we rewashed and dryed the sleeping clothes. but i am not jumping yet to bring them back into the sleeping room.
maybe this would be a good place to share the things that have been working for me , in spite of the observation of clinical ecology that poeple with MCS only get worse until medical intervention : (HA!) ofcourse along with the legs of our wellness stool around here
* ofcourse the macrobiotic plan modified to fight candida and chemical sensitivity (books by Dr Shery rogers) (but original concepts from Michio Kushi and his books helped too, especially bc western macrobiotics is not true to all aspects of the powerful approach)
* i never stopped working out...i have lifted weights seriously for several years. i havent develoepd as well as other people would in the same period, but no matter how hard it was or how bad i felt or what symtoms occurred, i always went to the gym and PUSHED. there were many times i had to break off and wait until i could go on (while symotoms were at their worst !) , but we always went on !
*adding more and more exercise over time...the other day we ran nearly three miles...not a lot (especially for someone that appears to have a prety good build) but very good for me
*a chinese medical practice along the lines of tuina...rolfing is supposed to be based in part on principles of tuina. acupucnture and herbs were not helpful for me, but apparently this was because meridians were "blocked" because of structural misalignments...in a sense, this works like a sort of chinese chriropractic. after more than a year of the chiro thre times per week, i still did not hold adjustments. (yes, we tried a few differnt chiros too ! :) after four visits to the doctor of chinese medicine who focuses on structure, we were holding in place. THIS REDUCED MY SENSITIVITY TO CHEMICALS A LOT
* once this chinese doctor had joint and structures and meridians "in place" again, regular chinese treatments were able to help more. he favors accupressure over acupuncture, so we do that and it has helped.
* ofcourse we have done all the avoidance techniques of clinical ecology~> the glass house routine, but the idea is that these are temporary measures to allow your detox system perhaps to catch up with the load of chemicals already in you. we also went beyond the usual approaches of clinical ecology in limiting/ending chemcial exposures to embrace limiting/ending exposure to metals as well. weird stuff, but it has helped a lot too. (no, we havent had the mercury fillings out...i am afraid that methyl-meth-acrylate which replaces it will just be debilitating in another way...very unsure about this issue)
*killing parasites...we made that more of a priority than in dr stoll's appraoch in the hope of finding some even minimal relief (temporary or not). ofcourse if the gut is still leaking, it seems futile to worry about killing parasites, but we kind of turned that around. we take parasite killing measures everyday, even while our gut problems persist, and this has helped reduce our sensitivity. a nauropathic explanation of chemcial sensitivity is that the liver itself become infested. pathways are blocked by parasites and/or their eggs and/or wastes.
*liver cleanses to flush the liver (and to cure allergies...we have no problem with gluten anymore)
*kidney cleanse
*ayur vedic techniques: stoking the digestive fire with daily fresh ginger and with HOT water. a cup of hot water every morning and a cup to sip with each meal do wonders for digestion even with intestinal dysbiosis. also yoga and chanting and some dietary methods
*music
*what i will call "attitude adjustment" learning not to see problems as problems basically ...they have VALUE. you just have to see it...and you cant see it unless you have a holistic view, not just of health but of your life.
frankly, i just always thought that i was basically not going to live to be 30. i am not sure why i thought this and i cannot make it sound anything but ridiculous, but i just always had that sense...not something i ever thought about...i am not extremely wild, but i do rely on risks as entertainment. a few years ago, one of my chinese doctors urged me to learn about chinese interpretation of physiological signs. those that indicate longevity-- i found-- basically terminate just before 30...interesting, but i dont really care. however, we then also learned that thsoe signs will change as you change the ways you live.
before, as my problems developed, i knew nothing about wellness. i ate worse than bad and had almsot no good factors in my life. i knew that i was getting worse and worse and that i felt unspeakably bad...i kind of think that if i had continued like that, it would have made sense for me not to live long.
in any event, the indicators of life span have grown as i have become better and better. interesting.
am i abusing this forum ?
In Reply to: Re: getting better and better turns into severe immediate crisis (Archive in MCS.)--> what i have done to get over this immediate problem of CHLORINE "INTOX." and also what i have done to get better in general in overcoming Multiple Chemical Sensitivity problem posted by leon cavallo on May 27, 2001 at 22:15:39:
Hi leon,
Do you have a partner in your wellness efforts, as you seem to say "we" instead of "I" when talking about yourself? Maybe you mean you and the professionals who help you?
I'm sorry for your MCS, and wish you the best of health!
In Reply to: Re: getting better and better turns into severe immediate crisis (Archive in MCS.)--> what i have done to get over this immediate problem of CHLORINE "INTOX." and also what i have done to get better in general in overcoming Multiple Chemical Sensitivity problem posted by to leon on May 28, 2001 at 03:26:04:
hi
thank you very much for yor kind words.
no, we dont have a partner-- personal, so called professional, or otherwise.
i forgot to include a few other things that we do everyday that have helped
*eating raw garlic and onions, especialy garlic before running
* RELAXING. i have decided that this is the most beneficial thing i can do, so i have made the concept of being calm very valuable. i am eager to think of this often, because i walways want to be doing something to help. this does. (it is also much easier to relax and not brace when you have some large landscape sort of reason to be happy. i remember another time in my life when i was very very happy...there was a feeling of good will pumping to every cell in m y body right along with the blood. i think theres no substitute for that.)
*spending as much time as possible with my 93 year old Grandmother, whose priorities are so clear that merely being near her is theraputic. i could write endlessly on the value of her help to me.
*spending as much time outside as possible.
In Reply to: more of what has helped me with Multiple Chemical Sensitivity problem everyday , and thanks posted by leon cavallo on May 28, 2001 at 18:08:34:
"no, we dont have a partner-- personal, so called professional, or otherwise."
Perhaps it is a spiritual matter then, that you sometimes refer to yourself as "we"? I just find it sort of fascinating, and can't help but wonder who the others of "we" are. Maybe you and your inner guide? You and God?
Thanks for your contributions here. I love what you wrote about your grandmother.
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