OT - Cleaning the Natural Way - You, Your Mask, Your Home

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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jennmary
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Post by jennmary » Mon Jul 16, 2007 7:11 pm

And yes......going to bday party was a huge thing for me. First time in years I have willingly left the house on a weekend.

I did however get into an email/myspace war with one of my bestfriends the day after about sleep apnea. She told another couple of our friends that the reason I had sleep apnea was because I was fat. I went a little crazy and sent out a really nasty myspace bulletin about the whole thing.


Here is a copy and paste job of it. lol Maybe I was harsh....but I was pissed and this is not the first time she has said something like this...here it is....

It has come to my attention that a friend (maybe more than one) of mine has said a few things to others regarding my medical condition and the causes of it. I will not say who it is....as it really doesnt matter and they know who they are.

They told someone that my apnea was caused by my weight. I am so furious right now I dont even think I can write everything I mean to say and get it out properly. Maybe before someone starts talking useless shit they should do some proper research and have a solid leg to stand on.

Maybe they should go talk to the large number (almost 50% in some studies) of very thin people who have sleep apnea. Maybe they should go talk to my drs (yes that was plural) about how they think I have had this for many many years.....long before I was fat. Maybe they should read some of the studies showing that it works in the opposite way many times......apnea causes a patient to gain weight, not the other way around. Maybe they should have the nerve to ask the question to my face before they spew such toxic untrue information to the world as if they know what they are talking about. Maybe they should pay attention to the fact that since I started treatment I have lost 8 pounds.....without trying. Now that I am treating it my body isnt releasing stress hormones 42 times an hour every time I go to sleep.

Also.....my SA is severe...and mixed. This means that I also have central apneas as well as obstructive. A central apnea is when your brain doesnt send a signal to your lungs to take a breath. A central apnea is NEVER caused by "weight". It is a brain problem. Being overweight may up the severity of my apnea. But losing weigh alone almost NEVER cures severe apnea. It has been known to help in mild cases.....but as severe as mine is, it isnt likely. My obstructive apneas are thought to be the result of a very narrow airway and very large tonsils. So tell me what the hell that has to do with my weight?

If it was sooooooo easy for me to lose weight dont you think I would have done it already? The reason my dr suspected sleep apnea was the weight gain and the fact that I couldnt seem to take it off.

I dont appreciate my "friends" running their mouths as if they are the resident medical expert. When you finish medical school and specialize in sleep medicine for a while then feel free to speak your mind....until then shut the hell up if you dont know what you are talking about!


For those of you who have been nothing but supportive I thank you from the bottom of my heart. You are true friends and I love you dearly. This isnt meant for you....as I hope you have already figured out.

For anyone (I am sure by now you know who you are) who is out there making these kind of comments......I have this to say. You are basically blaming ME for a medical condition that I have no control over. It is my fault that I have this I guess. I personally hope you wake up choking 42 times an hour every night for the rest of your life. Then maybe you will know how I feel.



She hasnt responded to this yet.....but I have heard that she knows it is about her and she is trying to think of a good response.

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Babette
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Post by Babette » Mon Jul 16, 2007 7:12 pm

I tried that stuff! I couldn't manage it. I still had white spots. I'm so lame with makeup!

LOL,
B.

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Machine: PR System One REMStar 60 Series Auto CPAP Machine
Additional Comments: Started XPAP 04/20/07. APAP currently wide open 10-20. Consistent AHI 2.1. No flex. HH 3. Deluxe Chinstrap.
I currently have a stash of Nasal Aire II cannulas in Small or Extra Small. Please PM me if you would like them. I'm interested in bartering for something strange and wonderful that I don't currently own. Or a Large size NAII cannula. :)

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jennmary
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Post by jennmary » Mon Jul 16, 2007 7:14 pm

lol. I only wear it occasionally....still dont have the energy for everyday make-up.

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socknitster
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Post by socknitster » Mon Jul 16, 2007 7:25 pm

Jennmary,

I can see why you were upset! It is good that you put so many facts in your response to her thoughtless remark. It is hard to argue with facts! You are so young and obvioulsy a fun person to be around--I'm sorry she hurt you and I hope you will think twice before giving any of your time or energy to her again. She doesn't sound like a keeper.

That said, are you sure it was mean spirited what she said and not said in some level of concern. If it is the former, cut her out of your life, if it is the latter, and she apologises, give her a second chance. Maybe she is just half-witted and doesn't know when to keep her mouth shut?

Do you trust the person who repeated her remarks? Did THEY set her straight or furthur use "her" comment to hurt you more? Gotta think about all these things when you sit down and think about who your friends really are. It seems so obvious to me that you are a beautiful person who is in a state of traumatic transition. I can't imagine being your friend and doing or saying something so hurtful--even to repeat a hurtful comment made by someone else?

Then again, you are soooooo young. I mean that in a good way. Your body will bounce back far faster than mine and yet you are still subject to the wild life associated with your twenties. No one your age is truly "settled" with themselves. Most people don't feel that they "find" themselves until they hit 40's or 50's. I was lucky to get an extreme confort level with my personality and appearance in my early thirties. I think that is rare!

Sorry, I'm rambling, but I hope something I said, made you feel better!

Jen

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jennmary
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Post by jennmary » Mon Jul 16, 2007 7:35 pm

Thanks jen. I think the girls problem is that she has a mother who went to RN school 25 years ago and then became a stay at home mother. Her mom thinks that since she went to school all those years ago that qualifies her to make DX and she thinks she knows everything. I think the friend just listened to her yapping and took it as gospel....it wouldnt be the first time.

I was already mad at her for something bigger, so it kind of added fuel to the fire.

I will likely forgive her....but she has some apologizing to do. Love her to death, but her lack of support and brushing this off as a "weight" problem drives me crazy. We have been friends since we were 14, so I know it wasnt meant in a mean spirited way, but she has a bad habbit of opening her mouth about things and then its always "oops, I didnt know...wasnt trying to be mean." So this time I just decided to take a stand. Maybe the whole sleep apnea thing has got my panties in a bunch. I dont know. lol

But I hope she does do some reseach, and I hope she comes forth with a genuine apology.

Now I want to go get beeswax for my wood bowls. You guys are a bad influence. lol Everytime I come here I want to go buy more stuff.

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gasp
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Seventh Generation Response

Post by gasp » Mon Jul 16, 2007 10:34 pm

Here is the response I received from asking Seventh Generation to get back to me regarding SLES. Anyone interested in the attachment he spoke to, PM me and I'll email it to you:

Thanks for your patience awaiting a response with regard to SLES .... Below is our [resident chemist] response to your question. I hope this helps as well as the attachment provided ...

__________________________________________________________

(1) There is a lot of "urban legend" around SLS (see the attached "Ingredient Myths").
- SLS is NOT a carcinogen
- SLS does NOT cause blindness

(2) SLS IS an irritant.

(3) The term "lauryl" refers to a 12-carbon fatty acid found in laurel (and in coconut oil). The presence of the term "lauryl" does not connote that a product is harmful.

(4) SLES contains a modification to SLS called "ethoxylation."
- SLES is less irritating than SLS (Report of the Danish EPA on
household chemicals)
- Ethoxylation can result in the formation of 1,4-dioxane, a possible (IARC Class 2B)
human carcinogen (same class as coffee, by the way).
- Levels of 1,4-dioxane are not regulated in the US. Manufacturers say their products
typically contain 20 ppm of 1,4-dioxane, but may contain more.
- The EU regulates 1,4-dioxane at 20 ppm
- Seventh Generation specifies that the SLES it uses contain no more than 5 ppm
1,4-dioxane.

-------------------------------------
My response: So, I will continue to use Seventh Generation as my main product for laundry, dishes, household cleaning, etc. My skin is seriously sensitive and if I haven't had any adverse reactions, I tend to believe them. And I'm more weird about natural than anyone I know : ) Hope this helps others come to term with SLES as it did me. By the way, I do believe some companies do use the higher levels meeting EU regs but do not use lower levels such as Seventh Genration does (see last bullet point above).

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gasp
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Post by gasp » Mon Jul 16, 2007 10:46 pm

jennmary wrote:My face still looks GREAT! No oil, no grossness. I am so thrilled. If I had been out in the heat like that a month ago I would have had an oily mess going on. OCM is my new best friend. I even told my friend about it....though she seemed a bit weirded out. But maybe after seeing how my face held up today she might rethink it.
Excellent! Now I want it - you should see the shine on my face after being in the heat in pictures last week. Eeeek. Not good. Why can't I just photograph how I look in real life, in pictures, without makeup? Sheesh.

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socknitster
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Post by socknitster » Tue Jul 17, 2007 7:47 am

Thanks for the info, gasp. I suspected that maybe sles wasn't as toxic as sls. Especially since it is derived from coconuts. I use seventh gen for dishsoap and love the lavender scent. Makes handwashing the few dishes that don't fit in the dishwasher less of a chore.

jen

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Babette
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Re: Seventh Generation Response

Post by Babette » Tue Jul 17, 2007 10:21 am

Hey Gasp.... THANK YOU!!!!!!!!!!!!!!!!!!

The check is in the mail.

Yes, that helps me very very much. I've decided I can live with SLES in my dish soap, but I'm enjoying the experiment of getting it out of my shower and laundry. In fact, I washed all my comforters this weekend. All the towels. All the underwear. I can report that I'm LESS ITCHY in certain spots. And the patchwork quilt grandma made looks great!!! It had probably not been washed in 20 or so years...

Now, on to the NEW worry of the day... Parabens. What's with Parabens? Why are some organic lines touting they are Paraben free? Why should I care?

Cheers,
B.

_________________
Machine: PR System One REMStar 60 Series Auto CPAP Machine
Additional Comments: Started XPAP 04/20/07. APAP currently wide open 10-20. Consistent AHI 2.1. No flex. HH 3. Deluxe Chinstrap.
I currently have a stash of Nasal Aire II cannulas in Small or Extra Small. Please PM me if you would like them. I'm interested in bartering for something strange and wonderful that I don't currently own. Or a Large size NAII cannula. :)

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Babette
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Post by Babette » Tue Jul 17, 2007 10:31 am

Read a couple of articles on parabens. All by companies touting their products are paraben free. I see a similar trend to the SLS.

Hey! Don't eat large quantities of SLS or Parabens, 'kay?

LOL,
B.

_________________
Machine: PR System One REMStar 60 Series Auto CPAP Machine
Additional Comments: Started XPAP 04/20/07. APAP currently wide open 10-20. Consistent AHI 2.1. No flex. HH 3. Deluxe Chinstrap.
I currently have a stash of Nasal Aire II cannulas in Small or Extra Small. Please PM me if you would like them. I'm interested in bartering for something strange and wonderful that I don't currently own. Or a Large size NAII cannula. :)

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RosemaryB
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Environmental Working Group website

Post by RosemaryB » Tue Jul 17, 2007 4:01 pm

I love this website as a way to research ingredients in cosmetics. They are a watchdog group and are currently lobbying to get regulations for ingredients in cosmetics. Here's their homepage

http://www.ewg.org

They have a database of all kinds of cosmetics and personal care products and rate them on their safety. I've been using this for years. Here's a search for parabens. As you can see, there are different types of parabens and some are more toxic than others.

http://www.cosmeticsdatabase.com/wordse ... ry=paraben
- Rose

Thread on how I overcame aerophagia
http://www.cpaptalk.com/viewtopic/t3383 ... hagia.html

Thread on my TAP III experience
http://www.cpaptalk.com/viewtopic/t3705 ... ges--.html

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gasp
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Re: Seventh Generation Response

Post by gasp » Tue Jul 17, 2007 11:10 pm

Babette wrote:Hey Gasp.... THANK YOU!!!!!!!!!!!!!!!!!!

The check is in the mail.

Yes, that helps me very very much. I've decided I can live with SLES in my dish soap, but I'm enjoying the experiment of getting it out of my shower and laundry. In fact, I washed all my comforters this weekend. All the towels. All the underwear. I can report that I'm LESS ITCHY in certain spots. And the patchwork quilt grandma made looks great!!! It had probably not been washed in 20 or so years...

Now, on to the NEW worry of the day... Parabens. What's with Parabens? Why are some organic lines touting they are Paraben free? Why should I care?

Cheers,
B.
Some organic companies say they are using "food grade" parabens. I am definitely allergic to parabens, food grade or not. I don't buy any product with parabens - period. They are mostly used as preservatives. Aubrey is my favorite line. I found this article that included this regarding Aubrey.

"Aubrey Organics® has never used parabens, nor do we accept raw materials that use them. In 1974 Aubrey created a natural cosmetic preservative with citrus seed extract and vitamins A, C and E. This is the only preservative we use in our hair and skin care products. Aubrey has always felt that the parabens were neither safe nor effective preservatives. The research presented below supports Aubrey Organics® and other natural cosmetic manufacturers who avoid parabens."
http://www.organicanews.com/news/article.cfm?story_id=5

Also, I will only buy products with SLES in it that are made by a company I've researched such as Seventh Generation who strips the toxin and uses a very low percentage in their ingredient.

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gasp
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Re: Environmental Working Group website

Post by gasp » Tue Jul 17, 2007 11:13 pm

RosemaryB wrote:I love this website as a way to research ingredients in cosmetics. They are a watchdog group and are currently lobbying to get regulations for ingredients in cosmetics. Here's their homepage

http://www.ewg.org

They have a database of all kinds of cosmetics and personal care products and rate them on their safety. I've been using this for years. Here's a search for parabens. As you can see, there are different types of parabens and some are more toxic than others.

http://www.cosmeticsdatabase.com/wordse ... ry=paraben
Nice sites. Almost time for bed - I'll take a look at them tomorrow. Thanks!

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jennmary
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Post by jennmary » Wed Jul 18, 2007 11:11 pm

A few nights ago I started getting tight in my face. Then last night I felt really tight and try...not flaky, just dry. This was after my OCM. Tonight I will tweak a bit and see if it helps. If not I might have to add a moisturizing step.

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socknitster
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Post by socknitster » Thu Jul 19, 2007 9:55 am

You might have too much castor oil in your mix or you might be too aggressive when you wipe it all off. Sometimes if I have on a lot of makeup I put on a little oil, then wipe it off to get off the makeup then smear on more oil and do the reg steps--that way I don't worry about all the makeup getting into my pores. Also, some have recommended after wiping it all off to take a drop or two of the oil and massage it into the face. I do that when my face gets that "tight, super-clean" feel and the oil is absorbed immediately and my face isn't oily or greasy. Just normal.

Amazing that you can wash your face with oil and it still gets that super-tight-clean feeling, isn't it? Seems the opposite of what should happen!

I have been experimenting with my hair washing techniques and I'm finding I only have to wash hair with soap every 4 days. Before, I washed it every 2 days. Now, I wash it on Day 1. On Day 2, I might just brush it and if it looks fine, leave it. If not, I spray lightly with water to reactivate styling product and restyle with blow dryer and brush. On Day 3, I rinse hair with water, saturate with conditioner, leave it for the whole shower and rinse out at the end. Day 4 is repeat of Day 2 and by the next day it is too greasy to consider anything but washing. After "washing" with conditioner though it is just as clean as with soap for two days!

I'm hoping with time that it helps my scalp condition. I had an aesthtician once tell me that the absolute best thing for your skin is its natural oils. So stripping my scalp of its oils less often will hopefully be a good thing. I'm hoping eventually to space out the soaping up even more if my scalp decreases oil prod a little over time.

Another hint is to rinse hair with cold water after rinsing out conditioner. It seals the hair cuticle and makes it curlier and fuller and more resistant to damage. This is something I have done in the summer time for YEARS. It really works for me. And is very refreshing in the summer. Not so much in the winter, though!

jen