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Do you keep asking "how did I get this?"


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#1 ladyhawke

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Posted 03 April 2009 - 01:39 PM

Hi All,

First off, let me tell you this story. I worked 18 years in a tire plant as a tire builder. Never had any time off no matter where I worked. I've done bungee jumping, sky diving, very active person. Busy all the time. I used to say, "I don't have time to be sick" . Oh the arrogance of the healthy. Well, I do now. Anyway, the company that I worked for had an outside agency to handle their short term disability (STD) and long term disability (LTD) people. I was going through so much and this woman on the phone was so good to me. She's also a nurse, so knows a lot. She handled my STD claim. First I had polymyositis, then scleroderma. When I told her about the scleroderma she said that she handled a lot of compensation claims from Gold miners who got it from breathing in the silica dust. Well, I have 4 cats here. actually 5 right now as I'm cat sitting for a month. I have one of those automatic cat litter boxes and I use a good name brand clumping cat litter. I wrote to the company and asked for the ingredients as it's not stated on the container. I specifically asked about silica. I got a very nice response. Here's the part I want you to know:

All our clay based cat litter products are completely safe, non-toxic, and non-hazardous Our clays are naturally occurring clay minerals known as “fuller’s earth.” Our clay based litters may also contain small amounts of crystalline silica in the form of quartz. Crystalline silica, in the form of quartz, is the second most abundant mineral in the earth’s crust. (This mineral is even found in beach sand.) Extensive research and testing has proven that consumer exposure to respirable crystalline silica during normal use of clay-based cat litter poses no risks to humans or their pets. Pets and their owners have used clay-based litters safely for over 65 years. During that time there has been no scientific evidence linking clay-based litters with any adverse health effects on cats or their owners.

Okay. So I do a search on "respirable crystalline silica and scleroderma". It is definitely linked as far as an "occupational hazard". I did find one article that did mention cat litter and scleroderma but it was someone's blog.

Anyway, would like to see if anyone has any thoughts on this? How many of you have cats, and just any and all thoughts in general. I just wonder if this is what brought this on for me.

Hugs to all,

Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#2 Margaret

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Posted 03 April 2009 - 02:01 PM

Hi Lisa,

I have had anywhere from 1-5 cats at a time living in our homes. I am the only one who has ever handled the litter boxes and they have always been kept in the basement. I don't have Sclero but Gareth has undifferentiated connective tissue disease (UCTD).

Take care, Everyone.

Margaret

#3 Shelley Ensz

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Posted 03 April 2009 - 02:06 PM

Hi Lisa,

Just out of curiosity, were you exposed to any toxins in the tire plant?
Warm Hugs,

Shelley Ensz
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#4 ladyhawke

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Posted 03 April 2009 - 02:43 PM

Thanks for the responses here. Shelley -- well, from what I'm reading about silica exposure, it is in the dust that is inhaled that causes the problems. They do have silica in the tread of the tire. And I did think of that, but by the time I would handle it, there would be no dust present. It would already be in the tread which I would put on the tire. No one else at my plant has it, and as far as I know, no one at any other plants either. But I could see it causing problems in the cat litter because it's so dusty and goes right into the air. I wonder if some people are more susceptible than others? But after I posted this, I did a search on soapstone and silica. My hubby for a short period of time did some soapstone carving. And sure enough, there's silica in most soapstone. I wonder what else it's in? I just wonder where this came from as I'm sure everyone else here does too. I'm sure none of us, would have imagined we'd be here and yet here we are. I also want to say how grateful that I am to have found this Sclero group. I may not post much, but I do come and read lots and anytime I've posted, you are all here. I hope you know what a lifeline you all are, those who have been here awhile and those who are new. If we have to have this disease, I'm glad to be here with you - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#5 ladyhawke

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Posted 03 April 2009 - 03:18 PM

A side note here, I found this:

 

There is potential for danger ONLY when crystalline silica particles are in the air. There may be materials that contain silica but if the operations on those materials do not generate dust, there is little chance of inhaling the silica. Likewise, there may be silica particles in the air even though you don't see any dust.


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#6 summer

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Posted 03 April 2009 - 03:43 PM

Hi Lisa,

We have had 3 cats' for the last 20 years, our last remaining cat died last year at the ripe old age of 18 years. Regarding the kitty litter, I was the main person who used to change the kitty litter. Back in the days when we were watching our money, we used to buy the cheap old kitty litter which looked like gravel. The dust was terrible pouring it in the kitty tray, and I am sure I inhaled some of that dust. It was only a few years before my diagnosis of Scleroderma, I changed the kitty litter to the biodegradable litter(the one that looks like bunched up cardboard).

I have often wondered myself, what I could have been exposed to, we have renovated many houses. One house in particular, we had the old asbestos roof removed, I also sanded back walls that used to have the old lead paint in it. When you are in your 20's, you don't think about using masks, etc., you think you are invincible. So who knows, what triggered my diagnosis.

I'll be interested to hear other peoples comments on this.

Regards
Summer

#7 Jeannie McClelland

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Posted 03 April 2009 - 04:22 PM

Hi Lisa and Summer,

We have a good page on Causes of Scleroderma: Silica.

When I volunteered to donate blood samples to the Scleroderma Family and DNA Registry, I asked the Coordinator who spoke to me if they were getting any closer to discovering the causes of scleroderma. She said that among other things, they were investigating the possibility that it required several genes to be present (and you needed to have all of them) plus an environmental trigger, which might vary from person to person.

I don't know how that line of investigation has panned out. From a completely personal view, with absolutely nothing to back me up, I would think it makes some sense and might account for the great variability in the course of the illness from person to person, as well as the rarity of scleroderma.

Given that exposure to airborn silica particles from things like cat litter isn't at all uncommon, I'd think if it were the sole cause of scleroderma there would be more cases of it or the majority of us would have had cats. Plus, think of all the kids who've played in sandboxes or spent all summer on the beach.

Regardless, I think those of us who do handle cat litter or work in dusty environments should be very careful, as a matter of course. When Cat5 (named for a kind of co-axial cable - the Handsome Hubby is an 'alpha-geek wink.gif ) was still with us, I'd put her litter pan into a big plastic bag to empty it and then fill it under an old clear plastic shower curtain. No, I'm not that careful, I just really hate dusting! laugh.gif

Anyhow, those are my thoughts on the subject.


Jeannie McClelland
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#8 Margaret

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Posted 04 April 2009 - 12:47 AM

<< I just wonder where this came from as I'm sure everyone else here does too.>>

Hi Lisa ,

If anyone should have something *funky* in my house, it should be me and not Gareth. I am the one who has been doing stained glass work for years, taking care of flower gardens, stripping and painting funiture, etc. It's only been the past few years where industries/products tells you to wear masks when working in dust, painting, etc. I also helped my Dad strip the old asbestos side tiles off the farm house 35 + years ago --- long before they knew asbestos caused mesotheliomas. It's a very interesting question. Maybe it's MY genes that are so messed up, passed on to Gareth and made him predisposed for *funky* stuff!!!

Take care, Everyone.
Margaret

#9 Peggy

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Posted 04 April 2009 - 05:15 AM

I see that you too have Polymyositis. I was just diagnosed with that last June. Can you tell me what symptoms you have from that?

I suffer from such muscle pain and I can't tell if its from the sclero or the poly.

Thanks.

Peggy

#10 Jeannie McClelland

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Posted 04 April 2009 - 06:22 AM

Hi Peggy,

We've got a great page on Polymyositis. I won't say it has everything you want to know, but it does have a vast amount of information. :)

I've not been diagnosed with that, but have a lot of muscle pain and upper torso/arm weakness. My rheumatologist and I weren't happy with prednisone, so what he's prescribed for me is a Cox-2 NSAID anti-inflammatory and a muscle relaxant taken three times a day. It doesn't help with the weakness, but reduces the pain on most days down to an amount I can usually ignore.

Best wishes and a warm smile in lieu of a painful hug,
Jeannie McClelland
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#11 Amanda Thorpe

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Posted 04 April 2009 - 06:34 AM

Interesting thread. I've had cats for the years, the last one 17 years and the new one 8 months. I always do the litter duty and 99% of the time we use fullers earth type litter.

That said I think it must be a physical predisposition to sclero plus environmental/emotional factors and may well be a different combination of each for each person with sclero. That would at least explain why we are all so different!

Amanda
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#12 ladyhawke

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Posted 04 April 2009 - 03:46 PM

Wow, thanks everyone for all of your replies. This has been very interesting. After reading your replies and doing more research, I don't think the cat litter or the soapstone carving that my hubby did, "caused" this for me. But I wish I had been aware of the cat litter thing long before now. I've switched now to a cat litter that is clumping and flushable and made from corn. I think to actually get scleroderma from silica dust, you would have to be in it long term, like the gold miners are. (Just my opinion).

Jeannie: I'm glad you mentioned the muscle pain and upper torso/arm weakness. I have the very same. I've come off the prednisone and have watched myself go downhill. I was on it for 2 1/2 years. Finally, slowly weaned off of it. But man, I miss it!!! I feel everything and have lost what stamina I did have. This stinks! I'm going to ask my rheumatologist about what you are taking when I see him in May. I take ibuprofen but it doesn't help much at all.

Peggy....I would say the muscle pain is from the sclero. I don't know for sure, but I think if I just had the poly, I would be ok. I have no proof of this, it's just what is in my head.

Thanks again to everyone. I'm glad that I posted this one. It's eased my mind.

Hugs to all - Lisa
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#13 Jeannie McClelland

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Posted 04 April 2009 - 03:59 PM

Hi Lisa,

Did I mention I also take Plaquenil? It's helped with the pain and the fatigue. It took a while to fully kick in, but my goodness, I finally don't miss the prednisone.

I weaned off prednisone very slowly (1 mg every 3-6 weeks) and didn't know if I was going to be able to stay off it. I had some really rough months, so bad that my rheumatologist suggested I start on the lowest dose and titrate up until I was at an acceptable pain level.

Corn based cat litter, huh? I wish I'd known about it when Cat5 was still around. Maybe once the border collie count is down a little, we'll think about another kitty. Right now the dogs have finally gotten over not having her to boss them around. It was hilarious watching 6lbs of itty bitty kitty ruling 100lbs (total) of border collie with an iron paw.

Big hugs,
Jeannie McClelland
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#14 Margaret

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Posted 05 April 2009 - 04:43 AM

<<It was hilarious watching 6lbs of itty bitty kitty ruling 100lbs (total) of border collie with an iron paw.>>

Jeannie....we have one 15 lb cat that has no problem standing up his hind legs and smacking the 120 # Newf!!! Needless to say, the other 4 cats have free rein here, too!!!

Take care, Everyone.
Margaret

#15 ladyhawke

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Posted 06 April 2009 - 01:35 AM

Thanks Jeannie about the Plaquenil. I have a bunch of stuff written down to take to the rheumatologist in May and I've added that to it. Something has to give here. Thanks again everyone. I woke up this morning to a snowstorm, we got dumped on overnight. Man, I wish summer was here!

Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#16 Wohali

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Posted 06 April 2009 - 05:11 PM

Someone mentioned looking for genetic causes of Sclero. Are you all not aware many articles state there is a high incidence of Crest and Sclero in people of Choctaw Indian descent and also Thai? I happen to know I have Choctaw heritage though my family are considered as members of Cherokee tribe. Ok we are mainly Cherokee, though one great greatgrandmother I found was member of Choctaw tribe. From what I read the Sclero/Crest gene was traced back to 5 original members of the Choctaw tribe. So this is the real downside of being Native American :unsure: at least in my opinion.

As far as silica goes. I've always worried myself because the last several years I used that pearl litter for the cat which is pure silica gel. But I'm pretty sure I was diagnosed with Crest before switching her to that litter, though before that was clumping litter which from what I'm reading from people here STILL contains silica. That said all the silica is out of my house now as my cat died on March 12th and I'm still just as sick. Actually worse pain than ever. Though no one said removing silica from the house would suddenly cure Sclero. :P

But what about the Benzine exposure thing? I've read that was suspected cause of Crest too. I know I have had Benzene exposure in a former workplace over a decade ago. Not to mention Benzene is in all sorts of things such as those numbing throat sprays I used to practically OD on and its used to "extract" grapefruit extract for so called natural supplements.

#17 jefa

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Posted 06 April 2009 - 10:05 PM

Hi, Wohali. You make some interesting points. The article you refer to on the Choctaw studies can be found on our Causes of Scleroderma page.

What they are saying in the article is that all the Choctaw members in their study could be traced back to five specific Choctaw families in the 18th century, not the first five Choctaw members. In essence: "The findings, according to the authors, are specific to descendants of the five families, not to Choctaws in general, making the greater incidence of scleroderma among Choctaws a familial rather than ethnic phenomenon."

It is benzocaine rather than benzene that is in the throat sprays. I know benzene used to be used in the original decaffeination process for instant coffee products, but it isn't used any more.


Warm wishes,
Jefa

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#18 Kathy D

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Posted 18 June 2009 - 12:29 PM

I have been thinking about how I got SS and wonder about this......

From age 11 to 19 I worked as lifeguard/swimming instructor etc. at our local public outdoor pool every summer.

Part of the filtration system for the water was a huge cement vat in the ground with many filters that very micro fine silica sand (dust) would stick to. The silica dust covered filters would gather contaminants as the water was pumped through it.

We had to replace this sand every few weeks (backwash), drain the vat and spray off the old wet dust. Then refill the vat and add new micro silica dust one coffee can at 5 minute increments till all 200 pounds were in there and gathered on the filters again. Of course this all took place in a small confined pump house with little ventilation................

Food for thought,

KD
Diffuse Scleroderma Diagnosed March 2009

#19 Eos

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Posted 19 June 2009 - 01:50 PM

Hi,

When I first started having Raynaud's (RP) (and had no idea what it was until a few years ago) and joint pain I was in a no-animal household. I have now had between 3-7 cats for decades... yes and always done my litter duty. I must say it is quite dusty!

So since I had symptoms before cat, no connection for me.

#20 shaz

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Posted 20 June 2009 - 10:35 AM

My father has worked 35 years in the oil industry. He has been exposed to a lot of chemicals but one that he thinks stands out is silica which was mixed with a grease which lined valves, I will have to find out which one and post back