What is the worst chronic disease/illness that you have?

  • Thread starter gravenewworld
  • Start date
In summary: What would you feel if your blood pressure went from 135-80 to 205-90 because of such an exposure?I have been living with this for years, and nobody aside from my wife and a few other people seem to give a crap. People wearing clothes scented with "Bounce" or wearing "Unscented" Oil of Olay moisturizing lotion can put me in the Emergency Room. Our society seems to regard fragrance chemicals as a "free-for-all" - meanwhile, the incidences of childhood asthma and ADD and autism soar. Sounds like you have a severe allergy to fragrance. How do you suppose that works?If you have a severe allergy to fragrance, you may experience
  • #36
Wait wait never mind. I'd read that wrong, sorry.
 
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  • #37
turbo-1 said:
I have been living with this for years, and nobody aside from my wife and a few other people seem to give a crap.

Well WE care for one...
 
  • #38
Cyrus said:
How many people share your condition, 1 in 100,000? Should the entire world change their habbits because of it? Your last sentence is pure speculation as if there is a direct cause/effect.
I do not expect the world to change. I feel, however that people like me are the canaries in the coal mine. If you will do some research on multiple chemical sensitivity, you will find that the EPA (many years ago) sampled fragranced products and found that most all of them contained chemicals that are neural stimulants or neural depressants, some of which are carcinogenic and some of which have been banned for such use. Due to antiquate perfumery laws, the companies making such products do not have to disclose the use of these chemicals.

I do not think that it is a coincidence that the incidence of behavioral disorders and breathing disorders in children are on the rise. Plug-in deodorizers, Febreze on the carpets, scented fabric softeners in the laundry, etc, etc, insure that children are breathing a chemical soup at home and at school at a time when their nervous systems and respiratory systems are still developing.

http://www.organichealthandbeauty.com/EPA-Fragrance-Study_ep_46-1.html
 
  • #39
binzing said:
Well WE care for one...
Thanks, binzing. I have a friend (a young woman working as a research assistant at Harvard) who has a child with this condition, and her life is hell. There is no treatment - only avoidance, and that's nearly impossible these days.
 
  • #40
turbo-1 said:
Thanks, binzing. I have a friend (a young woman working as a research assistant at Harvard) who has a child with this condition, and her life is hell. There is no treatment - only avoidance, and that's nearly impossible these days.

I saw something today that made me think of you, turbo.

I was having my lunch while browsing a catalog of lab equipment (yeah, I'm a dork) and found this:

http://www.jenconsusa.com/latest.cfm"

In addition to the classic vanilla Smoothie, you can choose from a range of four fabulous fruity flavours each impregnated with it's own subtle fragrance: Banana, Blueberry, Strawberry or Lemon & Lime.

Why, why, why?
 
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  • #41
lisab said:
Why, why, why?
Just what you want in the lab when you are doing mass-spec assays or chromatography! Volatile organic compounds to contaminate your work-space. What an idea.
 
  • #42
George Jones said:
I have a 50% chance of having oculopharyngeal muscular dystrophy. Symptoms are late-onset, and, if I have it, they should start showing up now, plus or minus a few years. So, far, I haven't noticed any.

Oh my, what terrible thing to have hanging over your head. How did they make this determination?
 
  • #43
turbo-1 said:
I do not expect the world to change.
I don't know if I really would have invaded your space last week, turbo-1. But once I learned of your condition, I abandoned any such thought immediately.

I suffer from kidney stones which I pass on a regular basis, 9 in a year was my record. Also, I lose consciousness often and my body is unable to absorb all the things that I eat.
 
  • #44
jimmysnyder said:
I don't know if I really would have invaded your space last week, turbo-1. But once I learned of your condition, I abandoned any such thought immediately.

I suffer from kidney stones which I pass on a regular basis, 9 in a year was my record. Also, I lose consciousness often and my body is unable to absorb all the things that I eat.
Holy moly, jimmy. I passed a stone while on a VERY long road trip through the south for a business presentation. It was really painful. I can't imagine passing 9 in a year. Luckily, my project manager was driving so I could stretch out my leg to take pressure off the stone. When we got to the motel and got our rooms, I had him go to the nearest package-store and buy a couple of 6-packs of beer. I drank beer and let the urine build up until I felt I was going to explode, and managed to pass it that way.

I would have liked to meet you in person. People who are considerate and well-prepared (use fragrance-free laundry products and personal care products) can visit with no ill effects. Astronuc, his wife, son and daughter visited the summer before last and we had a great time. Maybe on another visit... Come up when the weather's nice and we'll cook out on the back deck.
 
  • #45
turbo, do any aromatic plants like pine or cedar make you ill?
 
  • #46
Proton Soup said:
turbo, do any aromatic plants like pine or cedar make you ill?
No. I love the smell of fresh-cut pine, cedar, fir, spruce, etc.

The things that make me sick are volatile organic chemicals that chemical companies use to simulate these smells. The cedar-smelling fabric softeners are among the worst offenders - they really lay me low.
 
  • #47
turbo-1 said:
No. I love the smell of fresh-cut pine, cedar, fir, spruce, etc.

The things that make me sick are volatile organic chemicals that chemical companies use to simulate these smells. The cedar-smelling fabric softeners are among the worst offenders - they really lay me low.

well, trees are full of volatile organics, which is why i wonder what the actual trigger is

http://www.sisweb.com/referenc/applnote/app-41.htm
 
  • #48
Proton Soup said:
well, trees are full of volatile organics, which is why i wonder what the actual trigger is

http://www.sisweb.com/referenc/applnote/app-41.htm
I have no idea. I have never had a problem working in the pulp and paper industry, nor (as a college student) working summers in a mill that made laminated birch veneers. I built a new woodbox out of rough-sawn white pine this year, and I love the smell of the boards.

I cannot determine what chemicals I am sensitive to because our laws (based on antiquated French perfume laws from long ago) let manufacturers list "fragrances" on the label with no details. This is pretty stupid, because anybody with a well-equipped lab can analyze a scented product and figure out exactly what is in it. This is how copy-cat perfumes can hit the market so quickly.
 
  • #49
turbo-1 said:
I have no idea. I have never had a problem working in the pulp and paper industry, nor (as a college student) working summers in a mill that made laminated birch veneers. I built a new woodbox out of rough-sawn white pine this year, and I love the smell of the boards.

I cannot determine what chemicals I am sensitive to because our laws (based on antiquated French perfume laws from long ago) let manufacturers list "fragrances" on the label with no details. This is pretty stupid, because anybody with a well-equipped lab can analyze a scented product and figure out exactly what is in it. This is how copy-cat perfumes can hit the market so quickly.

It sounds like you have multiple chemical sensitivity. It is more common than most people realize. It has been suggest that it is triggered by years of low dose exposure to chemicals. It is especially prevalent in Gulf War soldiers.

Prevalence
United States:
➢ 2%, New Mexico8
➢ 3.9%, North Carolina9,10
➢ 6.3%, California11
➢ 2.5-3%, Iowa (Military; non-deployed)12
The difference between “chemical sensitivity” & “Multiple
Chemical Sensitivity”9,10,11,12
➢ 4% of citizens estimated as disabled by Multiple
Chemical Sensitivity.
➢ 16% of citizens report an “unusual sensitivity” to
common every day chemicals.

http://www.mcs-america.org/MCSStatistics.pdf
 
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  • #50
Ooh, great. New mexico has those numbers prolly cause of my county alone with all our power plants.
 
  • #51
I contracted Labrynthitis during the end of my MSc year @ King's College London. Unfortunately, it was around the time I was building my robot and working on my thesis ~ however, with much effort I did most of the theoretical dev. whilst propped up in bed and glued to my laptop.

Due to the severer vertigo, I could not move much and my head felt like it was 'odd' for a good two months. I ended up flying to Geneva to my Aunts place (for a change of scenery) and to do the final LaTeX compile of the thesis...

It all ended very well of course, even demo'ed the robot to my Professor.

Back to Labrynthitis ~ simply aweful, I sincerely wish no one else ever has to experience it!

If you'd like to see my robot, click here and here. Robot project photo gallery over http://www.bsodmike.com/gallery2/v/projects/complete_projects/Omni-directional+Robot_001 .
 
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  • #52
Ivan Seeking said:
How did they make this determination?

My mother's mother, my mother, my mother's two brothers, and at least two of my mother's sisters had it.

It's not such a terrible thing. Symptoms show up late, and, once they do, quality of life is only very, very gradually affected. Life expectancy is hardly affected.
 
  • #53
That is very good news. I had assumed the worst.
 
  • #54
George Jones said:
My mother's mother, my mother, my mother's two brothers, and at least two of my mother's sisters had it.

It's not such a terrible thing. Symptoms show up late, and, once they do, quality of life is only very, very gradually affected. Life expectancy is hardly affected.
This is reassuring. All those syllables had me worried. I wish you the best.
 
  • #55
bsodmike said:
I contracted Labrynthitis during the end of my MSc year @ King's College London. Unfortunately, it was around the time I was building my robot and working on my thesis ~ however, with much effort I did most of the theoretical dev. whilst propped up in bed and glued to my laptop.

Due to the severer vertigo, I could not move much and my head felt like it was 'odd' for a good two months. I ended up flying to Geneva to my Aunts place (for a change of scenery) and to do the final LaTeX compile of the thesis...

It all ended very well of course, even demo'ed the robot to my Professor.

Back to Labrynthitis ~ simply aweful, I sincerely wish no one else ever has to experience it!

If you'd like to see my robot, click here and here. Robot project photo gallery over http://www.bsodmike.com/gallery2/v/projects/complete_projects/Omni-directional+Robot_001 .

WOW and you accomplished all of that while suffering from Labyrinthitis. You have my sincere admiration.

I went through three years of recurrent vertigo and it was pure hell. They ran a number of tests, none of which could conclude a cause. One of the tests is called a caloric test. The technician runs cold water into each ear and then I had to follow a red dot around a screen with my eyes. Then it was repeated with warm water.

The test makes most people very dizzy, but it was nothing compared with the vertigo. The tech couldn't believe how I was laughing and talking through the caloric procedure.
 
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  • #56
My brother-in-law suffered from labyrinthitis for months - nausea, vertigo, etc practically crippled him for that time. I wouldn't wish that one on my worst enemy ... well, maybe one fellow.
 
  • #57
I was diagnosed with labrynthitis many years ago. I forget what the symptoms were, but judging by the chatter here, I expect it was a misdiagnosis. I don't remember anything severe.
 
  • #58
Fingers crossed, nothing worse than occasional attacks of mild stupidity so far. Judging from my Dad's side family medical record I am either foundling or just before collapse.
 
  • #59
jimmysnyder said:
I was diagnosed with labrynthitis many years ago. I forget what the symptoms were, but judging by the chatter here, I expect it was a misdiagnosis. I don't remember anything severe.
My brother-in-law said that even when he was lying down with his eyes closed, he would feel like the room was spinning. It really laid him low - he lost a LOT of weight (that he could ill-afford to lose in the first place).
 
  • #60
Proton Soup said:
sinus medication? pseudoephedrine is what they give people for priapism, you know. shouldn't last more than a few hours, tho.

Well, I usually popped a couple before going out. So, I would go out, drink, and then I brought a girl home. I couldn't get it up at all.

Anyways, she left. I took some more to go to bed.

Same thing happened the next day too. I couldn't even get it up by myself. After like 5 days, I had sex, so then I was like... thank YOU!
 
  • #61
JasonRox said:
I took some more to go to bed.

maybe not, then, it doesn't mix well with sleep.
 
  • #62
Proton Soup said:
maybe not, then, it doesn't mix well with sleep.

They have day ones and night ones to help you sleep.

One time, I was making out with a girl. I had to stop, and then I coughed. She was like... "Are you ok?" I'm like... "Yeah, of course." And I continue. She wasn't thinking at all.

Anyways, don't mix allergy drugs and alcohol.
 
  • #63
I suffer from the same illness as Turbo-1. It is very difficult to deal with, mainly because of the attitude of society towards people who suffer from it.
 
  • #64
Generalized anxiety disorder. I used to take a sedative for it, but ativan is more than a little habit forming. My mother has it worse, I can get by without medication for the most part. Worst part is the autonomic response to constant stress--muscle tension, headaches and difficulty focusing.
 
  • #65
franznietzsche said:
Generalized anxiety disorder. I used to take a sedative for it, but ativan is more than a little habit forming. My mother has it worse, I can get by without medication for the most part. Worst part is the autonomic response to constant stress--muscle tension, headaches and difficulty focusing.

How do you deal with it? Does exercise help?
 
  • #66
Math Is Hard said:
How do you deal with it? Does exercise help?

Well when I had the ativan it was easy. Hands down my favorite drug ever. I really dislike SSRIs though.

Exercise helps. My job usually requires me to walk 5+ miles a day, so when I'm working I'm better off. Haven't been working much the last few weeks though, so I'm actually a mess right now.

Meditative relaxation techniques help with the muscle tension, as does a little alcohol. Caffeine usually helps with the headaches and focusing.

Biggest thing for me is keeping myself active, not letting myself sit around and do nothing (something I've been really bad about this week actually). If I sit and stew it's far worse. If I force myself to be social, to interact, and participate in activities it's much easier to deal with.
 
  • #67
does having the impulsiveness to make a volcano pus gun from the itchy lumps on my face count?
 
  • #68
franznietzsche said:
Well when I had the ativan it was easy. Hands down my favorite drug ever. I really dislike SSRIs though.

Exercise helps. My job usually requires me to walk 5+ miles a day, so when I'm working I'm better off. Haven't been working much the last few weeks though, so I'm actually a mess right now.

Meditative relaxation techniques help with the muscle tension, as does a little alcohol. Caffeine usually helps with the headaches and focusing.

Biggest thing for me is keeping myself active, not letting myself sit around and do nothing (something I've been really bad about this week actually). If I sit and stew it's far worse. If I force myself to be social, to interact, and participate in activities it's much easier to deal with.
I think exercise helps my stress and anxiety, but I also like to get as far away from people as I can. I like to go down to the marina and hang out with the sea lions and the pelicans. Or sometimes I just go and sit by the ocean and just sort of get lost in thinking about how huge it is. It kinda switches my brain to a dial tone.
 
  • #69
Math Is Hard said:
I think exercise helps my stress and anxiety, but I also like to get as far away from people as I can.

For me being around people actually helps. Which seems strange. My impulse when anxious is to hide, but interacting tends to calm me. Gives me an outlet for all the junk floating in my brain. Writing helps too.

I like to go down to the marina and hang out with the sea lions and the pelicans. Or sometimes I just go and sit by the ocean and just sort of get lost in thinking about how huge it is. It kinda switches my brain to a dial tone.

The beach is always nice. When I lived in san luis obispo I had a thing for walking the 12 miles to the beach. I'd leave a few hours before sunrise, get to the beach for the sunrise, stay all morning, walk back in the late afternoon. It was nice, very calming. When I first moved down here I still did it a lot, until gas went up to $4.50 a gallon. I'm still so tramautized by that I won't even drive to the grocery store anymore.
 
  • #70
Ooh I have GAD. But I also have irritable bowel syndrome which is a terrible combination.
 

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