The Crash of 39 and My Great Depression -

Thirty-nine. Not the year, but my age, three years ago when, in the middle of a Good Life, I suddenly became afflicted with diseases of “unknown origin and uncertain cure.” Interstitial Cystitis, Leaky Gut Syndrome, dramatic weight loss, severe allergies to anything animal, mineral or vegetable, CFS, Fibromyalgia, and Toxic Encephalopathy, manifested by severe depression. Determined to restore my health and my life, I began  searching for a unifying causative factor and an integrative solution and cure.

My journey to recovery took me from "trial & (mostly) error" psychopharmacology,   a  terrifying psychiatric hospitalization, three months at the Environmental Health Center in Dallas to other varieties of ancient and "21st Century" environmental and alternative medicine.

The unifying cause? Chemical toxicity, with mercury poisonong at the top of the list.  Prior to my career change in 1988, I had been a dental hygienist and for 15 clueless years, handling, inhaling and absorbing mercury and other poisons, not to mention tons of mercury fillings in my teeth. Add to that, decades of "Better Living Through Chemistry," a new home and office! The common feature? Dysfunction of the immune system and an inability to rid the body of toxins. Later, tests revealed that my blood and tissue levels for mercury, other heavy metals, petrochemicals and formaldehyde was off the Richter Scale! My T-cell count was as low as that of a person with HIV/AIDS. The result?  Progressively disabling illness. 

I have spent the past year and a half managing my own recovery with the help of my husband a few fellow canaries and some very compassionate and competent health practitioners. After a while, you gotta stop tinkering. I had to integrate what I knew, devise a program, commit to it and DO IT!  No commitment=No effectiveness. I am hopeful that I will recover in time, but I continue to feel concerned about my fellow canaries, and the fate of the planet.

11/98

I worked as a dental assistant.  We are always exposed to very high amounts of chemicals in cleaning instruments and the rooms that the patients sit in to have dental work done.

In spite of the fact that we wore gloves---the chemical came through the gloves.  I have never been sure if this would have aggrivated my fibromyaliga.

These chemical are to kill HIV , TB, everything to keep the public safe when we need to reuse instruments.  They are very strong but I never knew of chemical sensitivity so I am not sure what each of these chemical contained.  Even though there was suppose to be ventalation in the room we used to clean--it is rarely done in dental offices (((saving money and not truely being aware of what these chemical can do))).  OSHA does set requirements for ventalation, as I said before, but they are not followed.  Dental assistants have to rely on the dentist to know and I don't think they truly do.  This is truly an area that is not well educated and I'm not sure what affect it had on making my fibromyalgia worse.

But I did get much worse while working in this occupation.  Is there any way for me to be tested (((my blood and by whom))) to see if I have been affected by all the chemicals I used???

Anyone who has any feedback please email: munchie@adelphia.net

Louis' mother, Sue, writes:
Have you ever watched a spry little calf out in the field?  It is a beautiful sight.  They jump through the air kicking their little heels up and dart about wagging their little tails.  They flee about without a care in the world until they realize mamma's out of view.  Then they call out to her in their tiny voice and are comforted to hear her bellow back and run back happy-go-lucky once again.

This used to be my description of my son Louis.  He was happy-go-lucky. He thought he could do anything.  Even after developing MCS he still had the best spirits I had ever seen.  Much better than any adult.  It just didn't get him down.

Then there was the first blow.  He was kicked off his baseball team because he didn't have access to all the ball fields because of the chemicals used on or around them.  He only had access to one field.  We were content with one field but not the manager.  Louis lost all his friends during this horrible experience in his young life. He learned winning was more important than he was.

The next blow came after he re-established himself and made new friends on a church team.  After one season the church said it was impractical to not apply pesticides on their fields.  The pastor said even though they understood our sons and our family's challenge and suffering, he could no longer play on their team and on their fields.  This taught him that even the church didn't care about him.  This time even though no-one supported our family and stood up for our son, at least he held on to one friend. This experience was another blow to my little calf.

The last blow he has encountered was when our city broke our agreement and fogged pesticides by our home.  This was because I made "phone calls" to educate our legislators and I stood up for my sons rights and tried to do something for his suffering.  Because of the fogging, we had to leave our home and his father for 6 weeks.  Once again Louis couldn't play ball with his newest team and new friends.  Now, after coming home and after being exposed for 6 weeks Louis is worse.  He now has partial seizures and tourettes syndrome symptoms and his head aches and stomach aches have returned.  Tonight I held him in my arms while he fell asleep.  Actually, I couldn't hold my child because his muscles are so tense he couldn't lay still and relax.  After giving him his nightly massage he managed to put his head on my lap.  I rubbed his head as he drifted off clenching his jaw all the while and sort of moaning/humming under his breath uncontrollably. My calf is now back to suffering far more than before physically.  He now is depressed and doesn't spring back like he used to.  He has nowhere to go and hardly anyone to see.  When my calf cried out for me, there was nothing I could do to protect him.  As much as I try now, there is nothing I can do.  I have been trying to find a home in the country where he can go outside to play and get fresh air and not fear the exposures and suffering but I have not succeeded as yet.  Now, when he needs me most, I am spending my time calling realtors, searching the Internet and traveling all over trying desperately to help my poor calf.  How I long for my child to feel happy-go-lucky again.

Write to Sue and Louis

Note from Jeanne Hunt, a friend of Sue's:

I wanted to share Sue's story with you.  Many of you may remember Sue and Louis.  I think that this really says it all.  Please help me help Sue and Louis.

Anyone who knows anyone in Missouri with MCS please them and or  contact me with thier address, phone number, or email address.  I need to get thier input for the governors council on people with disabilities.  It is time for thier voices to be heard.  There are ears that are ready to hear thier cries.

Please help me.  Please help Sue.  But most important, please help Louis.  Our children need us.  Let us be that village that helps Louis. It takes a village to raise a child.

Even if you are not from Missouri please send in personal testimonies for the Governors council and let them know what life with MCS is like. 

Jeanne

While working toward a master's degree I started a housepainting business.  I ended up being very busy with the business and never finished school.   I had almost daily exposure to paints and solvents for the next seven years.  My health had previously been compromised by tonsil infections which took me two years to clear up.  But the seven years of chemical exposure really did me in.  I ended up with very severe MCS, with muscle spasms, severe pain, panic attacks, interrupted breathing, and many other problems.  I became even sicker for a while after I quit painting, but then things started to improve.  It has been seven years since I got clean, and I'm now quite improved.   I'm usually okay at home but get sick again when I run errands or interact with non-MCS persons who use commercial products.  I hope to work on that Master's again one of these years.

Visit Richard's web page:
http://pages.whowhere.com/health/foxyrich

I was a highly successful young woman, until I developed severe MCS last year and became disabled:  I graduated from high school a year ahead of my class with a 4.0 GPA and college scholarship.  At age 19, I was a public relations spokesperson for the Reno Police Department (Reno, NV); at age 22, I worked for the power company at Lake Tahoe (South Lake Tahoe, CA).

I held other prestigious positions as secretary to the president of First Interstate Bank (Reno, NV) and to the president/owner of The Ridge Resort (South Lake Tahoe, CA).  I have also been a legal secretary and supervised 25 employees for a large California alarm company.  I achieved two Associate’s Degrees (Psychology and English) and a Bachelor’s Degree in English (all with honors), and various professional and scholastic awards.  I was in excellent health, living a life well-balanced with exercise, nutrition, good relationships, creative outlets, and rest.  In short, I was living the good life, making above-average income, climbing the corporate ladder, with big dreams of getting my Ph.D. and going into psychiatry or teaching at a university.

I don’t know how/why I developed MCS.  I remember complaining to my mother when I was 14 that I got headaches from laundry detergents, and I always avoided lingering too long in the detergent aisles in the grocery stores.  But I wasn’t affected in any other way until age 28 (1991), when I finally figured out that the headaches, dizziness, and nausea I was experiencing at work was caused by perfumes—mine and others’.  (I wore all the designer fragrances up until that time.)  My coworkers were good friends and agreed to stop wearing perfumes to work.  End of subject, or so I thought.

But later that same year I moved from the cleaner mountain air of Lake Tahoe to Sacramento, a very polluted city.  Sacramento is in a valley and gathers both the pollutants from agriculture in surrounding areas and from its own massive population of cars and industry.  Within four months of moving here and taking a new job (with people who wore perfume), I began getting sick again.  Because I was a student (pursuing my BA at Sac State University with plans of transferring to  more elite school), I held an assortment of jobs, arranging work around my classes.  I ran into the perfume problem again and again at each job, and my symptoms began to get worse, including developing severe joint pain in my left leg.  In 1995, I asked my employer to implement a perfume-free workplace, and they supported me.  (I had been there three years at that point and had been promoted to supervisor, which enabled me to enforce the policy myself and educate my employees beginning with the time I hired them to work for the company.)  Again, my “perfume problem” went away.  I had no idea, though, that my intense joint pain and chronic insomnia were part of a bigger picture, called MCS.

In 1997, that company closed its Sacramento office and I took a new job with a local community college.  I thought it was to be my dream job.  My salary was exceptional, I had full benefits, and the job allowed me to use all of my assets and skills.  (I also became engaged the same month I started the new job.)  Though the college knew I was “allergic” to perfume and had posted signs claiming, “This is a perfume-free zone,” they did not enforce that policy.  On the contrary, there was extreme animosity from new coworkers at the idea of having to give up their fragrances; they went so far as to spray perfume on themselves while sitting or standing right next to me.

From the first day working there, I became extremely sick.  My headaches became migraines, the nausea precipitated vomiting, the blurred vision became tunnel vision—almost complete blindness at times.  Many other symptoms developed or increased, such as asthma, thyroid problems, constant diarrhea and stomach problems, PMS, etc. etc.  I went to doctors who did not know how to help me and who prescribed medications that seriously exacerbated my illness.  In spite of seeing me so terribly sick, my coworkers had no compassion.  They hated me.  But I felt I couldn’t leave for a variety of reasons, primarily because I figured I’d face similar problems with perfume anywhere I went, so why give up a high-paying job and let these b------ win?! 

I had never heard of MCS.  I thought I would eventually become immune to this “silly perfume allergy.”  I had no idea that by persisting in that environment I was poisoning myself beyond recovery and that my symptoms would continue to “spread” to both other chemicals and other symptoms.  Instead of merely being sick from perfume, I became sick to a long list of things, including car and diesel exhaust, deoderants, shampoos, cleaning products, dry cleaned clothing, paint fumes, gasoline and natural gas fumes, smoke, and so on. 

My life began to change drastically.  I could no longer wear my expensive tailored business suits (dry cleaning), high heels (leg spasms and cramps), get my hair permed or dyed, or use any of the usual products I had at home.  I spent a lot of money and effort finding unscented products to replace all those standard ones.  Even my family didn’t understand the intensity of my illness.  I lost all my friends and avoided my family, because they could not remember or figure out how to be totally free of perfumes around me.  I had to cancel my wedding plans because I could not convince the guests to come without fragrances and I didn’t want to be puking sick on my honeymoon (pardon the crudity).  And yes, I eventually became severely depressed.  I didn’t understand why I had this silly perfume problem; I was excruciatingly ill all the time; the doctors had no cure; my job was going down the tubes; I was isolated from my friends and family; no one believed me; and I was afraid of what would become of my life if I didn’t get better.  I could see that my life would be very limited if I had to avoid all these chemicals because they were everywhere!

Finally, 11 months after taking the “job from hell,” I was so ill I could not get out of bed.  My fiance had to force-feed me, bathe me, and take care of all the other household and financial chores.  I asked for a medical leave from work, and they supposedly granted it, but two weeks into the leave they sent paperwork notifying me I was being terminated.  I was too sick to fight it; I barely knew what was happening.  I was so sick I thought death would truly be a relief.

I remained bedridden for over two months (a short time compared to many with MCS).  Thankfully, I found a supportive doctor with some good ideas for treating MCS and I had the money to pay him out-of-pocket after my benefits ran out.  Fortunately, too, I qualified for Social Security Disability benefits six months after applying.

Like others with MCS, I went though a lot of agony asking, “ What happened to my life?,” “Why did this happen to me,” and “What will become of me now?”  MCS changes your life forever—too much so to describe.  But I have learned in a relatively short period of time—it’s been only eight months since I lost my job and became disabled—to appreciate the smaller things in life.  I don’t resent being housebound anymore; it’s so much better than being bedridden!  I’ve replaced my active life with one of milder pursuits, like reading a little here and there or watching a movie on the VCR when I can.  I have new friends through email.  My husband stayed with me, and is completely supportive. My attitude is positive again.   I was one of the lucky ones to survive and recover as much as I have. 

My husband Gordon and I both worked as Computer Programmers until I became sick in December of 1989 with what we thought was "Chronic Fatigue Syndrome" (CFS). 

We struggled for over 6 years while I remained very sick - the main symptoms being dizziness, spaciness, and severe exhaustion. Finally, in late 1995 we learned about "Environmental Illness" (EI) and "Multiple Chemical Sensitivity" (MCS). We found a doctor who specializes in EI/MCS and in January of 1996, we made a 9-hour journey to Boca Raton, FL, for a week of testing, evaluation, and treatment recommendations. This doctor discovered that I have many allergies and am especially sensitive to every-day chemicals in the environment. He believes this was caused by a series of events through the years that placed a strain on her immune system: living in mobile homes (formaldehyde exposure), working in a "sick building", and taking lots of antibiotics and hormones (which weaken the immune system).

We left Boca Raton with a renewed hope and much to do! We've had to eliminate all chemicals from our every-day environment - using only non-toxic products for cleaning, personal-care, etc. We've removed all our carpeting and replaced it with ceramic tile (carpeting is very toxic!). We've been getting rid of any furniture made of particle-board because it outgasses formaldehyde into the air. We have to avoid people wearing perfumes and other scented products, as I will have a strong reaction to the chemicals in those products - varying in severity from simply causing
burning eyes and face - all the way to causing severe dizziness, weakness, blurred vision, numbness, difficulty walking due to "jelly-legs" (ataxia), and even hallucinations! Needless to say, this has really changed our lifestyles! However, for the first time since getting sick in 1989, I am finally having more and more days where I feel "good". We fully expect the good days to increase and the bad days to decrease over time. It takes quite some time for the immune system
to heal from this kind of chemical assault. (See our "MCS Pages" for more information and Jacki's complete story.)

What has kept us both going through all these struggles is our deep faith in God. We have put all our trust in Him, and He has never let us down. He constantly reminds us that He is still in control and still cares for us. (See our "Christian Faith" pages for more about this and for strengthening your faith in God.)

We recently celebrated our 10th wedding anniversary! Gorden surprised me with a gold heart locket in which he'd put 2 sequins from my wedding dress about 5 years ago! When we were selling the dress, he found the sequins on the floor after the buyer had tried the dress on - and he put them up and saved them all these years!

Gorden is still working in the Computer field, but has been promoted many times over the years and is now a "Systems Project Analyst". I also taught private piano lessons before falling ill and hope to be able to teach again someday in the near future. I am currently enjoying developing web sites as a hobby as my health allows.

Visit Jacki's web page