tiredofdoctors

Honestly, we're supposed to get 1" - 3". You would think that we are going to have the blizzard of the century. They're breaking into programs with the "Winter Snow Alerts" and each has its own scary title with the big voice "Winter Snow Advisory", whatever EVERYONE is going out to the grocery for Milk, Bread (not me) and eggs! You wouldn't be able to get a parking space in the grocery lot if your life depended on it! And some of those people are mean -- they would hit a girl in a wheelchair! (Actually, I have been hit (on purpose) with a grocery cart because someone wanted me to move!)

At any rate, I'll let you know about our Blizzard -- I'm trying to figure out a way to attach my chair to the sled -- it would be one FANTASTIC ride down the big hill in the park. I had better get a seatbelt, first, though

Talk to you guys soon . . . . Lynne

P.S. Judy -- we have plenty of worms -- it's just that when I try to farm them for their "casings" (poop) -- it's really good fertilizer -- I keep killing them!

Hot Damn and Hallelujah -- I'm so excited I'm good at math!!!!!!

Jen, I'm sorry you're feeling bad today -- hope you get to feeling better this weekend. We're supposed to get hit with snow this evening -- are you getting it up north?

And, with regard to the earthworm farming, let us not forget, they all died. Still used it as compost -- had to say a little prayer each time I scooped some out -- you know, a euology and all -- but they still died

Hope you guys have a GREAT weekend! Hugs to you all . . . Lynne

BTW: I'm on the computer at 2:17 because I have the worst insomnia I can imagine -- at 5:30 this morning, I started watching the news, and the traffic reports for my husband. I have some pretty hefty nerve pain from this stupid disease, and they've given me a prescription for it (the latest, greatest type of Neurontin), but it still keeps me up some nights. So . . . I post on here! Beats the heck out of trying to clean the house during the night -- especially when you fall into the walls I do make the occasional smoothie -- so often that my husband doesn't even wake up now when the blender starts up!

Happy to do it! It's the least I can do to help everyone who has been SO KIND to me during my "learning curve". The help and support I have gotten on this forum has been unbelievable.

From a personal standpoint, I'm infuriated that these companies can justify their actions by claiming ignorance. EVERYONE should take responsibility for their actions -- acts of commission or omission -- and that means corporations, too. I just think that they need to stop hiding behind their corporate curtains and start making things right. We'll see how many others I can hound .. . . . Talk to you soon! Lynne

stef 4 dogs: I about peed my pants after reading your post!! Time and gravity haven't been kind to me -- I keep complaining that I have to pick my butt up off the back of my knees!!!!! . . .Lynne

Lisa B: I agree with your advice -- monitor her meds closely and monitor HER closely. I'm getting REALLY personal. My daughter was diagnosed with depression and anxiety (she is not celiac), and was given Paxil when she was a junior in high school. The pediatrician prescribed Zoloft, CHANGING what the child psychiatrist had prescribed, telling me that "this would be much better for the anxiety" and stating that she didn't like the child psychiatrist. (My daughter was doing very well at the time). I was naive enough to just blindly change the medication, "because the doctor said so." Ten weeks later, I was in the emergency room, then the intensive care unit with my daughter. She had taken an overdose, and they were hoping that the charcoal which they put down her in a tube would absorb enough of the medication that DIDN'T get into her bloodstream. Her heart rate was 260 (maximum heart rate of anyone is 220), and they were wondering if her heart was just going to stop.

I urge you to watch your daughter CLOSELY. What scares me is that, my daughter was having difficulty "fitting in" at school, as well. She was forced to change schools mid-year because we had pulled her out and done home hospital because she was ill, then she was re-routed to a different school because of it (long story). She was unable to participate in all the choral events that she previously had (this school had little or no choral program), and was unable to get the written recommendations from the teachers which she needed to get into the Governor's Scholar program in our state. She was prevented from getting them from her former school, and the new teachers didn't know her. She had previously been accepted and had participated in the Governor's School for the Arts, and she knew that participating in the Governor's Scholar program guaranteed her a full scholarship to any school in the state. She REALLY wanted that -- it was a personal goal that she had. The kids at the new school were cruel, she had a difficult time finding a group in which to fit in, and in general was very sad. That was when the psychiatrist put her on medication. She did well for 3 months, then the pediatrician butted in. When my daughter took the overdose, she showed NO SIGNS of suicidal ideation. There was not ONE of the signs at the time it occurred. We had watched her like a Hawk previosly, when she was first put on the Paxil, because she did show the signs. That is why she first went on medication.

I guess I am just really passionate about this, because I know what can happen -- I've been there, and by the Grace of God, I was allowed to have my daughter stay alive. I do believe in medications -- our entire family has a history of depression, and I strongly feel that it has a genetic component. Medications do work -- along with cognitive therapy, and all kinds of other therapy. I just want you to be aware that not always do you get the "signs" -- social withdrawal, lack of zest for life, etc . . . -- we had none of those. Please watch your daughter closely.

I didn't write this to scare you or anyone else, and I apologize if it does. It's just that if I can prevent one other mother from having to go through what I did, it will be worth it to post my experience. I'll keep you and your daughter in my prayers. Hang in there . . . Lynne

Jen, I've PM'd you about getting a copy of the crazyquilts, but I gotta know -- in what areas are you weak? Honestly, you're articulate, you know a TON of how to navigate the internet, you obviously know a lot about celiac and medical / sciences, AND, you're a domestic goddess. What is your secret? I seriously want to know, because you look REALLY young, and I'm 43 and couldn't do HALF of what you do. Holy mackerel! Please, for my self-esteem, reply and tell me just ONE thing at which you're marginal. It would be GREATLY appreciated!!!!! (Of course, you know that the message is sent in jest, but the sentiment is sincere.) Talk to you soon . . . Lynne

I think the best part of this forum is that, because we're all in the same boat, we all have a great, albeit twisted, sense of humor about the whole thing!!!!!

At any rate, I found a dietician in my area who actually KNOWS about Celiac and Gluten intolerance. I have spoken with her about my concerns, and particularly with the issue of weight gain / wanting to lose, and I have an appointment Feb 20. She is going to put together an entire "game plan" for me with regard to this -- and she said that she has a wealth of information with regard to it, and will give me copies of all . . .

She actually attended a conference recently that was presented by Shelley Case, the author of Gluten-Free Diet: A comprehensive resource guide.

Will let you know if she gives me any good advice. I have TONS of junk in my trunk and have a daughter getting married in August. Her future mother-in-law (who is a real WITCH ), is as skinny as a rail. I don't want it to be :"First comes in the FAT mother, then comes in the SKINNY mother." Hence, gotta lose a LOT of weight. Don't want my daughter to have them play "Baby got back" when I come down the aisle

Talk to you soon . . . . Lynne

I have a topic (thread) in this category which I started where I have been contacting companies, posting their responses, and posting my response to them. Please read my response to Proctor & Gamble. I felt very vindicated after writing it! Will let you guys know if they repond to IT! We'll see what happens . . . . Lynne

Happy to help. I'm used to writing letters because of my profession -- half of the work is writing! My friends tell me that I'm the "Queen of BS". They have also told me that "I can tell someone basically to go to hell, and make them think that they're going to enjoy the ride." So I think that's what I'm telling these companies. Hope they enjoy the ride Will keep going until I've exhausted every company I can badger! Hugs to you, too! . . . . Lynne

I agree. Until they show some good-faith effort, I'm not going there for anything. Trust is something you earn. They have a lot of "earning" to do.

And from Revlon . . . .

From: <rachel.evans@revlon.com>

To: <bodyworxinc@hotmail.com>

Subject: Re: In response to your comments from the Revlon website, 001581197A

Date: Thu, 9 Feb 2006 15:01:12 -0500

>Mrs. Lynne Wagner

>9210 Old Six Mile Ln

>Louisville, KY 40299-1627

>

>

>Dear Mrs. Wagner:

>

>We have received your comments from the Revlon website and wish to thank you for your interest in our products.

>

>Unfortunately, because of the way cosmetic ingredients are made and transported, we cannot guarantee that a product is gluten-free.

>

>If we can be of further assistance in helping you locate your favorite products, please call our Consumer Information Center toll-free at 1-800-473-8566. Our hours of operation are Monday through Friday, 8:30 AM until 5:00 PM. Any of our representatives will be glad to assist you.

>

>Sincerely,

>Rachel Evans

>Sr. Consumer Services Representative

>Revlon Consumer Information

My Response:

Dear Ms. Evans:

I cannot begin to tell you how disappointing your response to my question is. You see, I am asking a myriad of companies the same question, and am posting their responses on the Celiac website. The inability of your company to tell me whether your products will cause me ill health is certainly disappointing, given that, prior to my diagnosis, I enjoyed using your products immensely.

Celiac disease affects a large number of our population. It is a type of "gluten intolerance", which is an autoimmune disease. The body begins producing antibodies to gliadin, a component of gluten. In the case of individuals with Celiac disease, it wreaks hell on their small intestines and bowel system; in my particular case, it cross-reacts with other antibodies which my body produces, causing damage to the cerebellum of my brain, my retinas and the peripheral nerves of my body. None of this is reversible.

Given that I am already in a wheelchair because of this condition, it appears as though I will be unable to use any of your products. I cannot afford to take a chance that by using products for which the manufacturer will not take responsibility to ensure the public's health, I could possibly continue to damage my body permanently and further decrease my functional mobility.

Should your company become more conscious of the necessity to become more informed for your consumers, please feel free to contact me, and I will post that response, as well.

From Bonne Bell:

Dear Lynne,

The only products that Bonne Bell makes that contain glutens are the Original Lip Smackers (chapstick type container), Cosmic Lip Smackers, Kool-Aid Lip Smacker, Clip ‘n Go and Sun Smackers. All other products are gluten free. If you have any additional questions about any of our products, please do not hesitate to contact the customer service here at The Bonne Bell Company.

"Lynne Ellingsworth" <bodyworxinc@hotmail.com>

02/07/2006 01:12 AM

To customerservice@bonnebell.com

cc

Subject all products

My reply:

Thank you very much for your prompt and precise reply. Given some of the responses I have received, you have no idea how much I appreciate it!

Their "Skin Revver Upper" lotion DOES contain gluten -- they sent a sample with an order I placed -- wheat protein (I believe) was listed in the ingredients -- which is why I threw it out. I wear only Bare Escentuals, but use Cetaphil lotion. Just be careful!

I've started another thread where I am posting all the answers which I receive from companies (and my responses to them). You might be interested to read my response to Proctor & Gamble when they mandated a letter by my physician on his letterhead. I am still waiting for responses from Revlon, Almay, Dove, Maybelline, I think that's all. I'll keep you posted on my thread.

Isn't it amazing that the big corporations usually get a way out, and your basic "Joe Schmoe" would go to jaile for something like 30 years for a lie that big?

We got a flexible spending account this year just because we spend so dang much money on my doctor's visits and tests! -- Not to mention the $160 / month co-pay for my meds . . . . Lynne

Jillian -- go get 'em girl!!!!! Thanks for the support! . . Lynne

How disappointing.

You're right. We are talking about french fries. But we are also talking about a food which, according to what McDonald's formerly published, was safe for me to eat. But it wasn't, and I wonder how many perkinje cells in my cerebellum were destroyed, how much of my peripheral nervous system was destroyed, and how much of my retinas were destroyed -- all because they chose to post something that was incorrect? You see, I have gluten ataxia -- each time I eat gluten, it's just another few cells which I lose in my cerebellum et. al. I'm already in a wheelchair because it was caught too late. What do I do when it destroys the entire cerebellum, which controls all coordination throughout your body?

So you see, for me, it's not just about french fries. It's about a much larger issue. McDonald's told me that their food was safe, so I ate it. And it continued to damage cells in my body that do not regenerate -- I won't just "get better". THAT is why I am very passionate about their lies.

And as for me, since I was told in last March that I was no longer safe to drive or walk with a walker, and have had to close down a lucrative physical therapy practice which I owned, and have changed from the vibrant, active person I used to be . . . well, I guess I'm just not "myself" anymore, either.

Vincent -- I agree whole-heartedly. You are absolutely right on target. I had to call each pharmaceutical company for the medications I take -- the pharmacy wouldn't take responsibility for that -- in order to find out if my meds were gluten-free. GENERIC SYNTHROID produced by the company that was supplying it contains gluten. The medicine I was taking for my spasticity (I have gluten ataxia vs. celiac) contained gluten. The very thing I was taking to treat the SYMPTOMS of my disease was continuing to destroy my brain!

Throughout the process, however, I encountered the same "we don't know what our suppliers put in their products." I finally got so ANGRY that I was to the point that I said, "Well, call them, find out, then call me back -- here's my phone number. I expect to hear from you before the close of the business day."

I think that it is the responsibility of every company to KNOW what they're putting in their products. And I think it is their responsibility, as well, to be able to tell the consumer, on the spot, what ingredients are in / or not in their end-product. Your example of the potential ramifications if you went before a judge drove that point home beautifully.

I knew about the "vegetarian fries" when I was a kid working there -- they were 80% or so pre-cooked in lard when they got to the restaurant, so that all we had to do was drop them in the fryer for about 5 minutes. That was 1976. I don't know that they EVER disclosed that until they were busted!

I do think that this matter deserves press. I have a friend who is in the news business in Connecticut. I'll contact him, give him the forum and thread, and let him go to town! I'll also contact the local "healthcast" reporter here. Again, I don't want money from McDonalds, I don't want them to go bankrupt, but I DO want them to be held accountable for their actions and for them to admit it and to apologize for this. We'll see what happens. . . . . Lynne

Yeah, if my cerebellum only looked so beautiful! It has continued to degrade . . . you can see where it looks like it's "fanning out" due to the parts that have died off. Just hoping my brain can re-route some of those signals so I can get out of this #$%@'ed chair!

Well, got my reply from one of the Pantene - here's their response -- and mine:

Response (RightNow Administrator) - 02/08/2006 08:21 AM

Thanks for writing, Lynne.

Our consumers mean a great deal to us, and we're sorry you were unhappy with the

response you received when you contacted us. Our goal is to provide excellent

service to all consumers who reach us, and we appreciate your feedback. It's

through thoughtful consumers like you who help us make improvements in areas

needed. I'll be sure to share your report with our Beauty Care Department and

Suppliers, so they may be able to look into this.

Thanks again for sharing your concerns.

Jillian

P&G Beauty Care Team

P.S. Introducing Always with Soft Cotton-Like Dri-Weave. Feel the Softness now.

Love the Protection Always.

I think it's a little insulting that I'm writing you with regard to the fact that you can't give me answers about ingredients in your products which could potentially not only threaten my functional mobility, but my life, and you put an advertisement at the bottom of your reply.

Lynne Ellingsworth-Wagner, PT

Richard, I wrote the last portion of my response without knowing your circumstances. I cannot imagine, in the most horrible depths of my thoughts, what losing a child is like, and particularly in the way in which you lost your daughter. I meant no hurt to you and no disrespect. Had I known what you had faced, I would not have written that.

You have faced more than the whole iceberg. What a tragic situation and I can't imagine the turmoil you must have faced during that time of decision-making. I am so sorry for your loss, and hope that the pain of that is easing. I have no perspective as to how it would feel. I don't think that, until you have experienced it, you can. I have two friends who have lost their children; They have told me that the pain eases eventually, but so far never goes away (one lost her daughter 5 years ago, one lost her son last year).

If I hurt you in any way with my comment, I apologize sincerely. No one in your situation should have additional hurt heaped on you, particularly in an on-line forum. I am very sorry. . . . Lynne

First off, I don't think we're planning a class-action lawsuit, and neither are we are we "counting our money or planning to bankrupt McDonalds". I don't, however, think that it should be O.K. with ANYONE that when you go to a fast food restaurant you're taking a big chance with either your health or the health of your children. I think that McDonalds has vascillated with regard to its ingredients listing on several occasions, and somewhere, somehow -- even if it's through monitoring through the FDA -- they should be held accountable. As far as following the letter of the law -- what about following the spirit of the law as well?

Everything in life isn't as black and white as your posts make them appear. This one is right. That one is wrong. That one is rediculous. These are parents who are very concerned about the health of their children, and rightly so. They are trying to give them as "normal" a childhood as possible under circumstances which are less than optimal. 99.9% of kids go to McDonalds. It's just the way it is. These parents want to make sure that if and when their children get to go, they are medically safe.

Hysteria? You bet. Until you've held a very sick child in your arms in the ER, wondering what to do and feeling absolutely helpless about it , you haven't hit the tip of the iceberg of worry -- under those circumstances, however, it's just controlled hysteria.

so then, what will make the gluten stop destroying my brain? Do I have Brain Stones?????

Just thought about what I said -- hope my kids aren't reading this, because their first response would be -- "of course, we've always thought you had rocks in your head!"