2: Photos of MCS with gas mask
I rarely am able to leave the house. I ride in a car maybe 5 to 6 times
a year, usually a very short trip to the doctor's office.
Notice in the photos: even with the charcoal filters to protect me,
my eyes are still very, very sensitive.
3: 3 photos of MCS face in advanced stages
By the time I look like this, my mind is not working well.
The "mindfog" comes on with intense frontal headache.
Eventually, my eyes will swell tightly shut, my throat will swell and if
it
cuts off my oxygen we go to the hospital.
4: MCS Photos of terrible rashes
I get 2 kinds of rashes. These pictures show my regular, intense rashes.
My other rashes did not photograph well. They look like big red circle
inside my elbows, and also big red circle behind my knees.
This choker is made with the finest Japanese beads. The beads are so
beautiful they inspire me to work, even when I am sick and depressed.
"Every bead is a prayer", I believe that.
I made the ear rings thinking of little churches with church bells...
T 婦人は1997年2月から多種の神経症状のため私の治療を受けてきた。
T 婦人は最近消費者市場から撤去された有機リン系殺虫剤「ダーズバン」
に繰り返し曝露する長い経歴が1987年に始まった。患者は家庭用殺虫剤
として一年に４回、数年間にわたりこの殺虫剤を使用した。
T 婦人は1980年代後半に最初に症状に気付いた。
彼女はある種のアレルギー反応のようだと自分の症状を説明している。
その時の彼女の最も一般的な症状は、じんましんや発疹に関連した眼の腫れ
だったと彼女は述べている。
1989年に彼女は眼窩骨膜性水腫やじんましんに関連した認識障害を数日間
経験した。この間 T 婦人は、物事を理解すること、読むこと、手で文字を書く
ことが困難となるだけでなく、普通にしゃべることさえできなくなった。
I must wear a gas mask when i go to the doctor.
I go out maybe once every 2 or 3 months, no more than 4 times per year,
because i get too sick. And no, i haven't sued anyone. But I would love
to
make someone from DowElanco live in my mocassins for a week.
I try not to focus on the bad parts of how i live, the "hideous isolation".
Instead, i try to document the problem hoping that someday my documents
will
help someone else.
The good part of this illness, i learned new hobbies. In fact, one of my
greatest
pleasures is to do beadwork with Delica beads from Mijuki? company?
i use others, too, but the best beads are from Japan. so perfect, so beautiful.
My other pleasures are my creatures, or "critters" we say here
in the south.
I have 3 dogs. Australian Rainbow fish. Tree frogs, fire belly frogs,
firebelly newts.
The critters make sure i get up and get active every day.
My husband has been a saint through all this trouble, but has encouraged
my hobbies and critters. He is very patient man.
I want to hear from YOU in JAPAN! konichiwa? is that right? no, kunbawa?
it's been so long, 10 years since i spoke my last Japanese word.
I pray for your health, kat.
About an injury due to exposure to a variety of home pesticide products
containing Dursban.
My wife first got sick in 1989, and has been completely disabled
since 1993 with a condition called Multiple Chemical Sensitivity, MCS. She suffers from any number of symptoms when exposed to
various irritants. The symptoms encompass a broad range, some of which
include severe headaches, digestive problems, rashes, hives, ocular edema,
dry, cracking skin on her feet, double and blurred vision, vertigo, tremors,
muscle aches, muscle twitching, fatigue, cognitive problems, memory lapses
and breathing difficulties. These reactions can be aggravated by exposure
to fragrances, various food additives and preservatives, pesticides, various
cleaning products, formaldehyde, and car exhaust, to name a few. Now, many
of these symptoms are nearly constant. She has been admitted to the
emergency room twice in anaphylaxis shock due to exposure reactions. I
have
attached a photo as an example of an exposure to perfume.
Kat's husband
Please, get tested for Porphyria!!!
I was very sick yesterday, and must warn you to watch for another illness. Many people who have MCS also develop a chemically acquired
Porphyria.
An Australian researcher has published his study showing how this can
happen. Your doctor should see this paper.
There are several types of Porpyria. It can be genetically inherited or
chemically acquired. It can be a disorder of the blood and bone marrow.
In the case of bone marrow, the iron in your red blood cells become a
poison to your body. With MCS the type you usually get is Acute
Intermittent Porphyria. This is an illness of the liver, and it causes
terrible neurological problems. The neurological problems can even be
mis-diagnosed as MS, Multiple Sclerosis, or a mental illness such as
schizophrenia!!!
About 5 years after I got MCS, I then had Acute Intermittent Porphyria.
I must be very careful to avoid a porphyria attack. I had an attack
yesterday afternoon. I vomited up blood. I had bloody diarrhea.
I had urine the color of blood. I had blood coming out of my nose.
It is like your entire body wants to destroy itself. It lasted 6 hours.
I had to lay in the bath tub. i wanted to die.
Then, it was over, I was OK. Really, today I am just fine.
It is important to investigate what caused the porphyria attack.
I know that since I got porphyria I am sensitive to "crucifierous"
vegetables,
those vegetables that contain sulfur. These used to be my favorites foods,
such as broccoli and cauliflower. Yesterday, I had a soup for lunch that
contained a little spinach. Tuk says that may be the cause.
But Tuk also says I have not slept 24 hours total over 3 weeks.
It is true, I have not been sleeping much. *&%&^%&I headache!!!
Tuk says when I miss my sleep I become very sensitive to "every little
thing."
Another possibilty is that porphyria attack was caused by - LIGHT!!!
hahaha! I have to laugh!
Tuk says I must make my own light! hahaha! But, seriously, I went
outdoors, and forgot to stay away from the light. I played with the dogs,
I threw balls for them. I got enough sunlight to get a bad rash.
That can begin a porphyria attack.
I do not want to worry you. I am really ok now!!! But I tell you all
this because Porphyria is very rare, and your doctor may not know it when
he sees it. So you must learn about it and help others with MCS. Often,
the test you get for porphyria is wrong, because the technician has
never done a test. And guess what the medical text books say the cure
for Porphyria is????? TO AVOID CHEMICALS!!!
Tuk says "hello", and he says if there is anything, anything
at all, that
he can do to help MCS sufferers in Japan, just please ask. lov from Kat
and Tuk
Please, do not be afraid. Information is our best protection.
Vomit up blood, bloody diarrhea, urine the color of blood, blood
coming out of nose, are very dreadful to me.
Actually, although it looks like blood, it is mostly water. There
actually is real blood in vomit and diahrea. But the urine is mostly
colored like blood. It is still urine. After a porphyria attack, I drink
gallons of water for several days. I feel like i must drink water or I
will die. I'm still drinking water today!
(bath)
Cynthia Wilson of C.I.I.N. says 20 minute soak in water as hot as you
can stand it. Only 20 minutes, do not burn yourself. Do this only 3
times a week, not more. I found it helpful.
Tuk says my life has a purpose. I am here to love him.
sometimes i go 3 days with no sleep. Then I get sick.
The headache keeps me awake.
Tuk says I always get porphyria attack after a time of not sleeping well.
One night's good sleep is not enough to prevent an attack.
What we have lost.
Our chemical Injury is of the body, but even worse, it kills the soul.
You are right, it could kill us to travel.
I am so dis-connected to my family because for me there are -
no going to a job
no weddings
no funerals
no school graduations
no plays
no opera
no orchestra
no movies
no political or government meetings
no joyful celebrations at restaurants
no parties
no vacations
no guests
no shopping in stores
not even walking the dogs
no mowing the lawn
no driving
no flying
no public transportation
all these activities that connect us to people and nature are gone.
My husband still has a job.
But he is slowly getting sick, and has had to avoid many activities
because of the fragrances, etc.
You may freely share any emails i send you.
I think this is how we will change our situation,
by calling out from our isolation.
Nothing will change if we don't complain.
lov, kat
We must laugh or we'll die, i really believe it.: Kat
