A Plea for Help

[Guest guest]

Subj: please help Laureen and/or pass along to those who may 

Date: 3/22/2004 1:47:41 AM Eastern Daylight Time

From: ppebbles29@...

Sent from the Internet (Details)

A Sincere Request to My Dear Friends and Relatives or Anyone Else Who Can

Help:

Due to illness, I am suffering from a desperate financial hardship and could

really use some monetary assistance in the form of a money order, check or

via Paypal (through my e-mail account of ppebbles29@....  Yes, it

has two ps in the front for " Pensive Pebbles. " )  Checks, money orders, or

(small amounts of) cash may be mailed to me at:

Laureen Sullivan

503-92nd Avenue North

St sburg, FL 33702

which is where I receive my mail,

and possibly my new home as of April 1, if I am able to tolerate living

there after some recent renovations that were implemented which are not

necessarily safe or safe enough for my condition.  Plan B is my 10+

year-old, 2-person Eureka nylon tent which I just got from a fellow

chemically sensitive friend, although it will be a challenge to find safe

outdoor air in Florida (due to pesticides) or anywhere, for where to lie my

head down to sleep, not to mention “safe†in other, more common connotations

of the word.  I ask for any amount possible, if only $5 or $10 or one lump

sum, or monthly increments; it all adds up and I could use every penny, just

to survive!  I make this request bluntly and up front as this is a long

story of what has been going on with me and I don’t wish to bore you with

all the details, but you can, if you please or care, continue reading for

why I am making this request, to better understand what it is like to me be.

  I really am not looking for sympathy either and I hate to beg or ask for

money, but I am at a point where I have to, as both of my parents and

stepparents, as well as most extended family members, can no longer help me

very much financially, given their own debts, unemployment/layoff and

disability issues.  They have and continue to be as supportive as possible,

both financially and otherwise, although there have been some resentment and

misunderstandings along the way, doubts and objections over whether I have

truly been ill, and now, I can say, I have “proof,†quite a lot of it.  I

have absolutely no source of income, on or off-the-books, no boyfriend or

Sugar Daddies involved, and like I said, I have already exhausted all my

cash and credit, sold old shares of stock, etc., sold all my personal

belongings even (and what a bargain for the lucky buyers in Flagstaff,

Arizona!).  My Social Security Disability has been denied the first and

second times and the next step in the appeal process involves a 22+ month

waiting period in the state of Florida due to a 100,000 case backlog!  And

things appear to only get worse under the W. Bush and possible

impending 2nd Term G.W. Bush Administration, with probable privatization

and/or major cutbacks to the Social Security Administration as a whole. 

Good ol’ GWB is also taking away some 50,000 Section 8 housing vouchers

which will leave many impoverished elderly, disabled and families with

children out on the streets… but I won’t delve too deeply into politics

right now!  (I am on a few Section 8 waiting lists, with waiting periods

anywhere from 18-48 or more months, around the USA.)

You see, I have had two financial setbacks since 2001 due to some physical

disabilities, and I have not been able to catch up.  As it stands now, I

have maxed out my credit, am delinquent in credit card bill payments and am

facing bankruptcy, which I also need at least $500 for a lawyer to file

with.  At this point, I will never catch up to my debt with these outrageous

interests and fees and I am not too upset about having to do this.  I do

receive Florida Medicaid and food stamps of $141 per month (really not

enough and I have to supplement that with an additional amount of at least

$150 cash for more food and toiletries which are very humble things of soap,

shampoo, toilet paper, and natural cleaning products, which are much safer

and cheaper than the chemical ones!).  However, I have a much bigger and

time-sensitive need than just going bankrupt.  I am currently “certifiably

homeless.â€Â  This means that I am so poor, I can walk into a homeless shelter

and request a Certificate of Homelessness, which is a ticket to homeless

shelters.  However, my illness prevents me from being able to tolerate all

“normal†indoor environments, as well as public transportation and many

public places, whether indoors or outdoors (in the presence of “normalâ€

people or environmental pollutants, like fire or cigarette/cigar smoke,

diesel, gasoline or other petrochemical fumes, pesticides and lawn

treatments such as weed killers or fertilizers, synthetic/toxic chemicals

and fragrances of any kind, even in the smallest amounts (whether

colognes/perfumes, soaps, shampoos, laundry detergents and fabric softeners,

deodorants, hair gels/mousses and sprays, dry-clean only clothes and

synthetic (non-cotton) fabrics as well as elastic in clothing including

socks, underwear and elastic in the waist of pants/shorts, make-up,

creams/lotions, suntan/screen products, paper and printed products

(including books, newspapers, magazines, even my postal mail).  The list

goes on and on and on and I know it all sounds too crazy to be true, but

please read on.  People tease me about being the “Girl in the Bubble.â€Â 

Well, it is very similar to that, although I do not do well with plastic

either!

You see, those people who need to live in bubbles suffer from diseases like

SCIDS—Severe Combined Immunodeficiency Dysfunction Syndrome)—which involves

a depressed immune system of both T and B cells, which are produced by the

thymus gland and bone marrow, respectively.  While I do not have SCIDS (it

is mainly an infancy or childhood illness), I do suffer from drastic

depression of the immune system of both T and B cells, specifically T4, or

CD4 cells, which are a common biomarker in immune-deficiency illnesses such

as AIDS.  An Infectious Disease specialist has diagnosed me with “CD4

Lymphopenia†and says that a number of patients like myself go on to develop

“lymphoproliferative disorders.â€Â  Although I am HIV negative—I even had a

“viral load†test to be sure this was not a “stealth†form of HIV--when

I

arrived here at The Natural Place in Florida in May 2003, my CD4 count was

only 132 units above the determination set for AIDS (less than 200), and my

doctor and I feared the very worst.  (There are actually quite a number of

patients with HIV, cancer and other chronic illnesses who have much

healthier immune systems than me!  Even elderly folks have much stronger

immune systems than me!)  I have been tested for HIV and other viruses which

could cause such a depressed immune system, but nothing has been conclusive

so far, except for Epstein-Barr antibodies (indicative of my previous

infection with mononucleosis and possibly related to yet undiagnosed CFIDS

or Chronic Fatigue Immune Dysfunction Syndrome, where there exist patients

with CD4 counts lower than 200 which would qualify them as AIDS patients if

they also suffered from HIV or 1-2 other chronic related infections; there

is a very specific medical definition for the “AIDS†requirement, and I do

not meet it).  I since have brought my immune system up by almost 300 units

as of October 2003—which is still not near a healthy level and for someone

of my age—but I do not know where I stand today as I am awaiting test

results from last week to see if I have continued to improve, if only a

little bit, or if I have backslid.  I think I must have become stronger

because I feel so much stronger emotionally, but if anyone knows of

Hawkin or has ever read, “Death Be Not Proud by Gunther (a true story), then

one can see that very sick/disabled people can still do some remarkable

things with their minds in spite of their illnesses.  ny Gunther was a

brilliant, young man who died at age 15 or 16 from a brain tumor.  I believe

Albert Einstein or some other infamous scientist came to befriend him in the

hospital at some point in his life or on his deathbed, as this was one of

his greatest mentors and inspirations.

I do have several other diagnoses: Multiple Chemical Sensitivity (MCS),

Asthma, Hyper-Irritable or Reactive Airways Dysfunction Syndrome, Gilbert’s

Syndrome (a genetic liver disorder involving a liver metabolism defect in

glucuronidation, which my father also has, and which predisposes one to

Environmental Illnesses such as MCS),   I have multiple drug allergies,

abnormal menstrual cycles (appearing to be the onset of early menopause at

only age 31!), some issues with Irritable Bowel Syndrome, degenerative disc

disease in the lumbar spine (on top of the titanium BAK cage and 4 matching

screws I had “installed†on New Year’s Eve, 2001), a history of abdominal

adhesions (at age 23)and hiatal hernia with a strong family history of colon

cancer.  (Some may know my dad had a bout of Stage III colon cancer (at age

49) in 2002, for which he underwent and survived two surgeries).  I

experience visual disturbances (not hallucinations, but a weird form of

light sensitivity, especially at night to certain kinds of streetlights,

where single beams of light “come out at me†directly to each eye, like

Superman X-ray vision, and I also frequently see halos around colored

lights, such as stoplights.  It is all very pretty, but relatively dangerous

when driving as I can become catatonic when I have these experiences which

are relevant to what kinds of exposures I have had or possibly the car or

traffic fumes.  I also tested positive for visual contrast sensitivity at

the website: www.chronicneurotoxins.com, which is indicative of neurotoxic

illness or chemical (brain) injury.  (Anyone can sign up and take the test

for $8.95; I kinda wish someone would, as I am not really sure if this is a

scam, or possibly related to other visual problems I have, like my severe

myopia or retinal holes (without detachment as of 2002 when I was last

tested.)  I seem to have some family members on my maternal side, including

my mother, who may also suffer from a milder form of MCS (suggestive of a

genetic correlation common/shared environmental experience(s)/exposure(s)),

as they were not exposed to the same kinds of things I was, in my biology

and chemistry labs at high school and college, as well as the clinical

hospital lab I worked at from 1995-1997.  There, I also took the Hepatitis B

vaccination series as well as a booster MMR (Measles, Mumps and Rubella)

series, which was a requirement for the job.  You see, this is important,

because as of 1987, they changed this vaccine from a dead cell to a live

cell vaccine.  Some scientists have linked this newer form of the live

vaccine to Crohn’s Disease, autism and “pervasive developmental

disorder.â€Â 

(Whatever that is; I read that in Dr. Jordan S. Rubin’s book, Patient Heal

Thyself (copyright 2003).

I test negative to skin prick and IGE serological (blood) allergy testing

and do not get relief from allergy, asthma or steroid type medications; they

actually exacerbate my symptoms and can cause further damage to my immune

system, as can many common drugs like aspirin, ibuprofen or Tylenol.  Some

doctors suspect that I have a chemical brain injury, brain tumors/lesions or

limbic nerve system damage which is related to the MCS.  For financial and

other reasons, I have not been able to go for an MRI of the brain and that

may not be the exact test I need to rule out any brain issues that may be

underlying my unusual illness.  More recently, I have developed a sort of

“indentation†in my left lower cheek (maxillary sinus area) which has caused

some minor facial disfiguration.  This comes and goes, depending on how much

sun I get and/or whether I have been crying… something to do with the

sinuses and/or tear ducts?!  I consulted a doctor about this and he

suggested it was a nerve condition, possibly the start of Bell’s Palsy or

even Multiple Sclerosis, and just to watch it for the time being.  I have

found a picture on the Internet of a woman with this similar dent in the

exact same place, and even the left side of the face, and she was a sufferer

of paranasal sinus cancer, although I do not know that this is my problem. 

Her face was more disfigured than mine is right now and since I practice

such avoidance and use “natural†products, I may prevent myself from ever

developing cancer or impede its growth or potential, as many of us with MCS

tend to do because of our newer, “healthier†lifestyle choices and safer

environments.

I may also be suffering the long-term consequences of my childhood surgery

of a T & A (tonsillectomy and adenoidectomy) in which I suffered a severe

hemorrhage shortly after and almost lost my life at age 5.  (The tonsils and

adenoids are suspected to be involved in the immune system.)  After that, I

also suffered from occasional chronic nosebleeds in which I would soak bath

towels full of blood, pouring from my nose, until age 12, and have had

cauterization of the nose at a very young age.  Maybe this explains my

crooked and huge shnozz!  These days, I do suffer nosebleeds from certain

chemicals, strangely enough, hair conditioners, even the so-called “safeâ€

ones from the natural food stores, whether I wear them myself or I am

exposed to an environment or person who recently applied it, such as

entering a bathroom or shower after such a product has been used by someone

else.  Needless to say, I do NOT use hair conditioner any longer!!  I even

have to dilute many of the “natural†or safe personal care products that I

use for grooming and cleaning.  As many of them are costly, the dilution

helps them to go a longer way and in the long run, I actually save money

despite the initial cost of the items.

Another doctor believes I suffer from Post-Traumatic Stress Disorder related

to MCS.  I do admit that there are times when my related depression and

anxiety get the best of me, after all the sacrifices and losses, not to

mention such drastic changes in my lifestyle.  Many of you know me as

fun-loving, outgoing, adventurous, hard-working and humorous, and many of

you may have witnessed me losing all or most of those qualities over the

past 2-4 years.  Many of you have acknowledged me for my strength,

perseverance and determination in spite of these health or other life

tribulations.  I can be quite feisty and spunky, but this is a sort of thing

one just cannot imagine unless you walk in these shoes and I hope with all

my might that not one more person has to endure this horrible infliction,

but I fear this is something can happen to anyone at any time, given the

wrong exposure at the wrong time.  Because of its ambiguity, idiosyncrasies

and non-acceptance by the mainstream medical community (although it is

finally mentioned in the Merck Manual, albeit presented as a controversial

illness with probable psychological cause—TOTAL BULL!), this is an illness

where people do suffer from great fear, terror, isolation, avoidance and

capitulation.  Why would a person like me choose this?  Why would I give up

my former career, after working so hard from 1998-2002, to achieve a

one-to-three-year contract of a six-figure salary with free corporate

housing?  (This only lasted 3 months, hence no six figures were earned that

year, and since I was only an hourly consultant and missed a lot of hours

due to illness, I did not come out ahead financially in such a short period

of time.)  Why would anyone give it all up and go along with such a bizarre

and demanding illness such as MCS?  For that matter, why would anyone fake

it or “psychologically†hypnotize oneself to merely believe that they have

this specific type of illness?

For some reason, God wants me to be here still, whether it is to be humbled

or to educate and help others realize the damage they are causing

themselves, their children and this beautiful Earth.  The word must be

spread about the toxicity in many common consumer and personal care

products, perfumes and colognes, which are being rampantly developed and

advertised to what I call, “marketing victims.â€Â  Hail to Neil Young,

Butterfly Hill and Carson!  Ironically, though, I often say, “This

illness has caused us to become unlikely environmentalists.â€Â  I say this

because I used to use and abuse all the chemicals, whether ingested or

applied to the body or environment.  I would not have dreamed that I could

never paint my toenails again which I always thought looked “stupid†and so

unattractive without some color!  I used to lather on the baby oil, snuggle

up in my Snuggle-laden bedding and blankies, and douse my old, 1980s, spikey

hairdo with gobs and gobs of stinky, sticky hairsprays.

Also, there are a number of various treatments and a few very proficient

doctors who are extremely familiar and experienced enough with MCS to get

patients somewhat or very much “cured,†depending on the severity of their

illnesses and how dedicated they are to following the protocols, mainly

avoidance, diet, rest, nutritional supplements, detoxification with

sauna/exercise, or various injections or IV treatments, and in many cases,

removal of mercury/amalgam type dental fillings.  I have not had the luxury

of seeking out these doctors or treatments which may or may not help my

situation.  They typically do not accept or are covered by medical insurance

of any kind, let alone Medicaid which is the only medical assistance I

receive currently.  I spent over $2,000 (in credit and my own cash) in 2003

trying to diagnose and treat this illness; never mind what I did in 2001 and

2002, but I had worked half of each of those years and had the medical

insurance for the basic things.  I went to over 18 doctors, including

various specialists and 4 hospitals in a 4 year-period trying to figure out

what this thing is and how to get better.  I have struggled a lot and not

always shared each and every detail along the way out of my own denial and

lack of acceptance of this illness and the ridicule I face from having to

describe it.

I need to wear a thick face mask whenever I do venture out in public, which

these days is mostly only to visit a doctor or obtain my groceries.  I hear

everything from “SARS!†to “ †to “Anthrax†to

“Germs†to

just

plain old general laughter and giddiness and more so, from mean-spirited

adults and adolescents who ought to know better.  I enjoy children because

their smiles are so innocent; they just think I am wearing the mask to amuse

them like a clown or perhaps think that it is Halloween.  I once visited an

allergist who was an old-fashioned doctor who failed to accept MCS as

anything more than psychological and refused to even look at my supporting

medical evidence of my depleted immune system!  He told me that if I

continue to wear this mask, I will never meet a man to marry and have

children with!  Then, he asked me if this was even my goal in life (AS IF! 

I have a BA in Biology/Pre-Med and had a very nice career in pharmaceutical

research before I became disabled!) and what my sexual orientation was, to

which I replied, “heterosexual.â€Â  I walked out of his office, later calling

his secretary and telling her what transpired.  I added, “If I went to

doctors’ offices in order to meet men, I would have chosen a young, hot

stud!â€Â  I only wish I had thought of that comeback while still in the

doctor’s presence and said it personally to his face, the old bag!

Being outdoors is okay if no one is around, like at 3:00 a.m. on the beach

or certain times of the day when local neighbors are not too close to the

premises, doing the toxic things they do, but I usually have my mask around

my neck or affixed around my face just in case of an exposure.  Once someone

is drying their laundry with their smelly dryer sheets, I go bonkers, even

if the house is several hundred or thousand feet away!  I once passed out

for 16 hours after being exposed to a neighbor who was refilling his

lawnmower fuel reservoir with gasoline.  (Hence, I can not pump my own

gasoline either; I have to seek out full-serve stations or ask other

gas-buyers to do this common chore for me.)  Whatever you can smell, I can

smell it like 1000X (or more?) more strongly, and this sets off the

reactions.  It is not the smells, but the chemicals which cause the smells,

which is what makes me sick.  (The nose is the first and most direct link to

the brain, via the limbic nerve system, which is responsible for emotions,

memory and other mental functions.  I feel I am very close to developing a

seizure disorder (yet I am allergic to the commonly prescribed anti-seizure

drug, Neurontin, which many with MCS use and get relief, but I get facial

paralysis from).  I do totally pass out if I do not quickly remove myself

from the “bad air†or environment quickly enough or I pay for the

consequences later, sometimes for hours, days, or even weeks at a time.  I

fear that someday, I will never wake up again or I may wake up in a very

toxic environment for my condition, like a hospital!  (There are medical

professionals, students, as well as scientists, lab technicians, etc. who

have developed chemical sensitivities due to their occupational exposures. 

Some have formed special associations that are not well-known to the general

“layperson†with MCS.  These associations seem to be found outside of the

United States, much like anything else, where as “progressive†we Americans

like to think of ourselves, we can be quite the late bloomers in matters of

medicine and science.

Anyway, I do have some plans on how to survive and eventually get back on my

feet again.  I am in the process of writing two autobiographical books (on

very different topics, a sort of “before and after MCS†compilation, and can

continue on with this endeavor as long as my mother’s place works out for me

or I can otherwise afford to secure safe housing, i.e., my “bubble.â€Â  I

plan

to write them simultaneously, just in case one is more marketable or

“publishable†than the other, as I do need to somewhat capitalize on my

stories, as a means for survival as well as self-expression, which is

extremely therapeutic for me.  And, of course, I hope to educate scores of

people about various health and common issues that they have been too

ignorant or too busy to take their blinders off for a moment to give an ear

to.  Over the next several weeks or months, I may ask some of you for

assistance here and there, or even a little pep talk/e-mail to help keep me

motivated and inspired to go on, as this will not be an easy task and

procrastination is the worst and most unacceptable excuse!  But, I have

recently had some very special angels guide me, inspire me, and fill me with

confidence and compliments to my writing and other abilities, and have been

moved by several books, stories, websites, etc. over the past several

months.  I do feel the time is right and I have regained enough mental

health and clarity to take this thing on, as long as it takes.  As I am not

generally a very patient person and can be quite loquacious (talkative, one

of my favorite vocabulary words back from high school!), I hope to complete

these books within a fairly short period of time.  This will take much focus

and dedication, not to mention having a safe environment where there is

electricity to use my computer (both for word processing and

research/Internet purposes, since I do not tolerate inks, books and other

printed materials very well).  I do hope to not only live off of any profits

I eventually earn from my writing career, if only these one or two books,

but also pay off any debts or financial gifts I receive from you along the

way.  I would also like to give back, in charity, especially to the disabled

folks out there.  I know that expression, “What comes around goes aroundâ€

is

so true, and with each of these humbling and traumatic experiences, I

realize it even more.  I am so grateful for many recent turns of events,

especially since the start of 2004, for these angels and rescuers who have

come around in my life to help me during this hard time.  One of them was my

friend, Ira Cohen, who I lost on Leap Day to a heart attack at age 51.  Ira

taught me how to be joyful and passionate about life again, in spite of

illness, and my good friend (who has MCS), Ann--who is in her 70s--has

taught me how to do it, specifically in the face of MCS, as well as all the

struggles and glories of maturing into womanhood.

I do bid you all health, happiness and prosperity and thank you in advance

for your generosity and/or investment (however you want to look at it), no

matter what quantity.  God Bless!

Love,

Laureen (aka PagiBoy to my Tangleword buddies)