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Rachel--24

Omg...i Might Be On To Something

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X, will be thinking of you and praying that you can have fun at this wedding!

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Laura,

Have a nice, safe trip--and I hope that you feel better in time for the wedding. I think it will be good for you to just get away for a little while and think about happy things.

Been meaning to PM you--we'll talk when you get back--have a wonderful time :D

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Have a wonderful time at the wedding, Laura!! I'm sure you'll find the energy you need when you're there ... so be sure to have a few days to rest when you get back!!

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Laura, if you are still reading I hope you have a wonderful time, I know you must be so looking forward to time with Eric and I'm very glad that you will see him. :)

I'm beginning to wonder myself. Dr. Blaylock also linked those with excitotoxins. I would make sense that they are different manifestations of lyme though wouldn't it.

Andrea, I think this supports my theory that the excitotoxins are like steroids for the bacteria. Yes, I think there are different manifestations of Lyme, I see three but I am just learning, I see the Pain Body which I think gets the Arthritis or Fibro diagnosis, the Exhaustion Body which gets the Lupus or CFS and the Confused Body, and that includes the mind, which gets the Alzheimer's diagnosis. However all three are present in everyone with Lyme to some degree or another. I am sure this is just a very crude picture and not to be taken as any kind of absolute opinion, I am open to learning more.

I know that when I began to be aware of the negative effects of MSG it was in my thirties, in my twenties I had lived in California and eaten unprocessed and mostly organic vegetarian food and had not experienced the reactions I began having. I was newly married at the time and we were both working so we were eating a more processed diet with canned spaghetti sauces and such, still not instant but definitely with some additives. I began to notice a burning on my tongue and a feeling as if something was crawling inside my skin trying to get out, I would get very irritable, my blood sugar would drop and I would have to eat, like that very moment or I felt like I was going to pass out or lose my mind. When all this first began happening I just thought it was because I was married. :ph34r::lol: I returned to a unprocessed diet and mostly organic and many of these issues resolved themselves.

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I am still mostly warm although my hands and feet are often cold and like you I don't tolerate heat well which I think also goes with Lyme, it would make sense that if the spirochetes like the cold they would not like the heat.

Hmmm...I dunno...this Lyme girl LOVES the heat....the hotter the better! I'm not kidding...I feel WAY better when there is heat.

I was blasting the heat in my office, I still blast the heat in my car, I love hot baths, LOVE being outside when we're in the 90's...even 100's, loved going to the saunas everyday last summer. I felt GREAT after the saunas....but sometimes a little tired.

I was the only one wanting Rachelville to stay in the 80's all the time. :ph34r:

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Hmmm...I dunno...this Lyme girl LOVES the heat....the hotter the better! I'm not kidding...I feel WAY better when there is heat.

I had to laugh at this. I love the heat too. Gimme heat. My husband has always been warm blooded and he loves to turn the air conditioning on so its like 60-70 in here. I'm always turning it up to about 80.

I also love it when its like 100 outside.

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drive By hello- OI haven't had time to read everything in the alst few days but got to read back about 5 pages.

Laura- have a FUN FUN FUN weekend. :D

Rachel etc.- I used to ALWAYS be too hot!!!!!!!!!!!!!!!!!!!!! Then when all my health problems started happening I was FREEZING cold all the time. Goosebumps, chills etc. I couldn't get warm enough...even in the summer. It's gotten better since going gluten free but that's definitely not the whole picture for me.

I maent to write more but when I got home from the doctor's office the other day I was really upset. Not by the appointment, but from the drive. I used to live 15 minutes from work, now I live an hour. I used to be able to drive for 8-10 hour stretches with breaks here and there. When I drive an hour now, I am so stiff and cold that I literally feel sick. It takes me like an hour to shake it off and I had just driven an hour in each direction to go see my doc. By the time I got home I was so stiff I was scared. :(

I had a really interersting talk with my department's secretary last night- totally random but she told me she has Fibromyalgia. her symptoms sound JUST LIKE ours (yours, mine, all of us) so I told her that my doctor was pretty sure that my "fibro" was secondary to something else and that I was being tested for Lyme's. She wants me to keep her posted. It was so strabge though, I started crying while talking to her because she's the first person I've talked to face-to-face who knew EXACTLY what my symptpms felt like.

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Pretend you're working in Rachelville....

hmmmm...if I were working in Rachelville, dingos and geese would be herding the customers and keeping the toxins away....there would be hunky cops and shirtless construction workers....all kinds of gluten-free delights to eat and....lots of friends! wouldn't that be great!! :P

Well...you guys were right. I DID JUST FINE. in fact, I did extremely well. I actually took a tranquilizer, it quiets my mind, and then eliminates the PANIC, so that I can follow and listen and THINK calmly and logically. This is so sad, but I will have to take the tranqs the first three or four times working there. But, it was fun, so many interesting people coming in, and I am the biggest dork, I LOVE talking about paint and pigments and colors and what they're working on and how they can do it.....of course I was able to do this immediately as felt quite comfortable and had used the products. So....I did not totally suck!!! :rolleyes::rolleyes::rolleyes:

Thanks for your support and love. :wub: I got through it, and I think I"ll be okay. It's not my be-all end-all, of course, but....baby steps. and they are very nice people.

I am too tired to write any more....reading and following.....Rinne (and BTW have you all noticed how many emoticons Rinne is using lately? :lol::lol::lol::rolleyes: - always a good sign) - - what was that about the.....confused body? because that's what I am.....my grandmother had Alzheimers quite severely.....egads.....do I have Lyme in my brain? :huh:

off to bed to watch Gray's. good night friends..... ;)

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I had a really interersting talk with my department's secretary last night- totally random but she told me she has Fibromyalgia. her symptoms sound JUST LIKE ours (yours, mine, all of us) so I told her that my doctor was pretty sure that my "fibro" was secondary to something else and that I was being tested for Lyme's. She wants me to keep her posted. It was so strabge though, I started crying while talking to her because she's the first person I've talked to face-to-face who knew EXACTLY what my symptpms felt like.

Beverly,

I never really thought about it but I guess I havent met anyone face to face who's got symptoms like me. I think I would cry too. I'm pretty much alone as far that goes. I *hear* alot about other people who are ill....it seems like everyone *knows* someone who's sick like me....but I never actually meet those people.

Fibromyalgia seems to be what everyone else has. <_<

Even my new Dr. was very surprised that I hadnt been given this diagnosis over the past 4 years. He said "What...they didnt even give you the courtesy of a Fibro or chronic fatigue diagnosis??" :blink:

If they had told me this was my diagnosis I would have probably laughed at them. Am I the only one that doesnt see this as a real condition?? :unsure:

Well...of course its REAL....but to me its real in the same way that having irritable bowels is real. There is obviously REAL pain and discomfort going on with these things but HELLO...there has to be a REAL reason...right??? :huh:

I dont get all these people accepting a life of pain due to Fibromyalgia. Am I missing something?? :huh:

I have a book about TMJ....in the book it says TMJ goes hand in hand with Fibromyalgia. WTH??? :unsure:

I tried to learn about Fibromyalgia (since I have TMJ) and the whole thing just didnt make sense to me. I *still* dont know what it really is.....or what suppossedly causes it. WHAT IS FIBROMYALGIA?????

All I know is that I got TMJ when I got sick....never had a problem with my jaw or any other joint prior to this. I got dx'd with the TMJ...I got sent to a TMJ "class"...where they teach you exercises and stuff like that. I got fitted for a special expensive guard to wear at night and then I got sent to "chronic pain" classes to learn how to "live" with my chronic pain. Not just the TMJ...but all of my pain. :huh:

NOTHING about any of this felt "right" to me. How could I go from perfectly healthy to sitting in chronic pain classes (alot of the people in the class had Fibro :o ).....how is that even possible....to be that sick and in that much pain and yet....nothing is *causing* it????? :blink:

ALSO....what good is the freakin chronic pain class if you cant even get out of bed to go to them??? I mean sheeesh....if I could make it to all these classes...I could probably make it to work too...but I COULDNT and I was on state disability....and the doctors were acting as if I didnt care because I "flaked" on my chronic pain classes!! :blink:

Woah....I totally went on another rant I think. :ph34r:

Sorry...dont even know where I was going with all this....

oh yeah....I dont think Fibromyalgia is real. <_<

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Does tooth-grinding factor into this as well? My mother has ground her teeth for so many years, some of them are down to little stubs.

She had years of diarrhea, but stable weight, and diagnoses of IBS and Crohn's were bandied about--but she insists that she is fine now.

And, interestingly, she hardly ever served pasta (once every couple of months), and rarely served bread except at lunch for sandwiches. Breakfast and lunch were always gluten-free, but I never realized it until I went to college. Hmmmmmm.

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Well...you guys were right. I DID JUST FINE. in fact, I did extremely well. I actually took a tranquilizer, it quiets my mind, and then eliminates the PANIC, so that I can follow and listen and THINK calmly and logically. This is so sad, but I will have to take the tranqs the first three or four times working there. But, it was fun, so many interesting people coming in, and I am the biggest dork, I LOVE talking about paint and pigments and colors and what they're working on and how they can do it.....of course I was able to do this immediately as felt quite comfortable and had used the products. So....I did not totally suck!!! :rolleyes::rolleyes::rolleyes:

Thanks for your support and love. :wub: I got through it, and I think I"ll be okay. It's not my be-all end-all, of course, but....baby steps. and they are very nice people.

Yes...baby steps. :)

It sounds like you had a GREAT first day...I'm stoked about that. I knew you would be FINE but the fact that you were happy and enjoying the job makes it even BETTER. Its so much easier when you actually enjoy what you're doing...I hope it continues to be FUN for you. :D

Were you seriously asking about Lyme in the brain?? :unsure:

Dont know if it was a serious question but I read that it can afect people differently....mimicking all types of diseases...including those that affect the brain. I think it depends on genetics and also wherever you are most vulnerable. Symptoms can develop in the area of your body which is most vulnerable....your "weakest" areas. So not everyone *appears* to have the same disease when it comes to Lyme because it affects people differently. Some people appear to have "phsychiatric conditions".....when in fact they have Lyme.

Its past my bedtime so I will tell about my Bioset appt. tomorrow...Donna I havent forgotten....I'll pm you tomorrow.

G'nite all. :)

I also love it when its like 100 outside.

There is someone else like me!! :lol:

Seeee....I am not so crazy afterall. :P

I was in HEAVEN when we had the heatwave over the summer...I didnt want it to end.

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I had a really interersting talk with my department's secretary last night- totally random but she told me she has Fibromyalgia. her symptoms sound JUST LIKE ours (yours, mine, all of us) so I told her that my doctor was pretty sure that my "fibro" was secondary to something else and that I was being tested for Lyme's. She wants me to keep her posted. It was so strabge though, I started crying while talking to her because she's the first person I've talked to face-to-face who knew EXACTLY what my symptpms felt like.

That is great that you met someone face to face. I will be curious to read about what she thinks as you start getting test results and going through treatments.

Well...you guys were right. I DID JUST FINE. in fact, I did extremely well. I actually took a tranquilizer, it quiets my mind, and then eliminates the PANIC, so that I can follow and listen and THINK calmly and logically. This is so sad, but I will have to take the tranqs the first three or four times working there. But, it was fun, so many interesting people coming in, and I am the biggest dork, I LOVE talking about paint and pigments and colors and what they're working on and how they can do it.....of course I was able to do this immediately as felt quite comfortable and had used the products. So....I did not totally suck!!! :rolleyes::rolleyes::rolleyes:

Great news Susan! Glad you enjoyed your first day. :D

Rachel,

Ranting is totally allowed. :)

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I had a really interersting talk with my department's secretary last night- totally random but she told me she has Fibromyalgia. her symptoms sound JUST LIKE ours (yours, mine, all of us) so I told her that my doctor was pretty sure that my "fibro" was secondary to something else and that I was being tested for Lyme's. She wants me to keep her posted. It was so strange though, I started crying while talking to her because she's the first person I've talked to face-to-face who knew EXACTLY what my symptpms felt like.

Beverly, no surprise there were tears given what you have gone through and I am thinking this woman may be very fortunate that she and you talked, perhaps she should be tested for Lyme too.

Well...you guys were right. I DID JUST FINE. in fact, I did extremely well. I actually took a tranquilizer, it quiets my mind, and then eliminates the PANIC, so that I can follow and listen and THINK calmly and logically. This is so sad, but I will have to take the tranqs the first three or four times working there. But, it was fun, so many interesting people coming in, and I am the biggest dork, I LOVE talking about paint and pigments and colors and what they're working on and how they can do it.....of course I was able to do this immediately as felt quite comfortable and had used the products. So....I did not totally suck!!!

Thanks for your support and love. :wub: I got through it, and I think I"ll be okay. It's not my be-all end-all, of course, but....baby steps. and they are very nice people.

I am too tired to write any more....reading and following.....Rinne (and BTW have you all noticed how many emoticons Rinne is using lately? :lol::lol::lol::rolleyes: - always a good sign) - - what was that about the.....confused body? because that's what I am.....my grandmother had Alzheimers quite severely.....egads.....do I have Lyme in my brain? :huh:

Susan I am so glad that you had a good day at work, :) my only concern is that you will have so much fun there we won't see so much of you here, :ph34r::lol::P and what is this about moi and emoticons :P:blink:<_<:blink::lol:

Amy Tan had Neuro Lyme, it mostly affects the brain, and yes that is what I am wondering about you dear Susie. :( I hope it is not the case but you do seem to be part of our Lyme Clan. :)

I dont get all these people accepting a life of pain due to Fibromyalgia. Am I missing something?? :huh:

I have a book about TMJ....in the book it says TMJ goes hand in hand with Fibromyalgia. WTH??? :unsure:

I tried to learn about Fibromyalgia (since I have TMJ) and the whole thing just didnt make sense to me. I *still* dont know what it really is.....or what suppossedly causes it. WHAT IS FIBROMYALGIA?????

Rant away, I completely agree. I think they might have eventually given me a Fibro diagnosis, my mother has one. :( She also has jaw problems although she hasn't been diagnosed with TMJ.

I think that for many people by the time they are given the Fibro diagnosis they have been in pain and distress for so long that any diagnosis, if it comes with medication, is acceptable to them because they are so desperate for some relief from the pain.

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Hum, I'm cold sometimes but not all the time, but I DO have a low body temperature, low blood pressure, and probably low adrenals...I DO almost always have cold hands and feet.

donna -

I have low blood pressure- and am almost always cold- especially my hands and feet (and nose too)

Oh sheeeet! :lol: I'm like 10 pages behind.....

Just randomly posting to things-

Laura, I had lots of tests done through Great Smokies Labs. It was some time ago though.

What I find interesting about the stool testing is in one of the links that rinne or Rachel posted the other day one of the leading docs talked about how lousy stool testing is. He said you can only detect parasites and etc. like the first 30 minutes in a fresh stool sample and labs today aren't set up that way. Every stool test I had done always came back clear, so I don't know. IMO, I'm not so sure how helpful they are.

Susie Q- Good luck with your first day on the new job :D:D You are probably already there, I think you are going to do great and let us know how it goes.

Great joke too :lol:

Oh, and I dl "Mercy Street" and listened to it, LOVE IT!!!!!! You have to listen to "I Grieve" if you haven't already, can't remember if you said you had, it's from the City of Angels Soundtrack.

Um, let's see what else....

Richard, how sweet are you :D

Talking about Parkinsons makes me think of Alzheimers as well. Alzheimers runs in my family and at that link I referred to above the said lyme bacterias were found in 7 out of 10 Alzheimer patients brains. Wouldn't that be something if lyme is responsible for most of the mysterious diseases today like ALS, Parkinsons, Alzheimers, Jacob Crutzfiled (sp?), etc.

Thanks for everybody's comments on my symptoms from yesterday :) I just don't detox, all of my detox pathways are blocked/dysfunctional, whatever, so I am literally a walking toxious person :lol: I totally think that is what my swelling is, the toxicity trapped in my tissues.

Julie-

Ive had alot of tests done through great smokies- I trust them . The thing with stool tests is there is nothing is nothing as accurate as a "live" stool test. There are not many places that do them I had one done at this place I think it was called jetti catz (but I am sure I am spelling that wrong) . the other stool tests do test for things but not the same amount of parasites and not quite as accuratly.

I am actuallly waiting for results right now from great smokies.

I am also a very "toxic "person. If I eat the wrong thing I never get D only C. Its like my body refuses to get rid of the bad stuff- It wants to hold on to it so it can really do as much damage as possible.

I think my body just dosen't detox - Thats why I am so prone to candida and other baceria- My body seems to be the ideal breeding ground for these little critters. The weird part is I never get D but I lose weight I eat all the time and lose weight I swear there must be a really fat me walking around somewhere on another plane. And even though I lose weight I just get really really bloated to the point where breathing is difficult its very frustrating.

miamia

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I had a really interersting talk with my department's secretary last night- totally random but she told me she has Fibromyalgia. her symptoms sound JUST LIKE ours (yours, mine, all of us) so I told her that my doctor was pretty sure that my "fibro" was secondary to something else and that I was being tested for Lyme's. She wants me to keep her posted. It was so strabge though, I started crying while talking to her because she's the first person I've talked to face-to-face who knew EXACTLY what my symptpms felt like.

Yep, I have a good friend who has fibromyalgia really bad. As we've talked over the years, her symptoms seem so similar to mine...there are a few differences. I've tried to relay some of the things I've learned over the years, but I think she is one who accepts the diagnosis. She is on pain medication nearly constantly I think now and nothing seems to help. I think one of the reasons we became such good friends is because we had found someone to talk to who understood what it was like and we didn't judge each other for not being able to do something that everyone else thought we should be able to do.

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I am also a very "toxic "person. If I eat the wrong thing I never get D only C. Its like my body refuses to get rid of the bad stuff- It wants to hold on to it so it can really do as much damage as possible.

I think my body just dosen't detox - Thats why I am so prone to candida and other baceria- My body seems to be the ideal breeding ground for these little critters. The weird part is I never get D but I lose weight I eat all the time and lose weight I swear there must be a really fat me walking around somewhere on another plane. And even though I lose weight I just get really really bloated to the point where breathing is difficult its very frustrating.

Miamia, I am like you in that I never get D. I was always round before but now I can't keep weight on, when they weighed me in Calgary I was 117 pounds and I have been scared to get on the scale since then. Maybe 117 doesn't sound so bad but when I weighed 145 pounds I wore a size 8 and felt just fine. Now a size 4 can feel loose and that is beyond strange for me, I haven't weighed this since I was 15. I get really hungry and eat and I eat enough that before I would have gained weight and then I feel "fatter" for a few days but I can't keep eating so much because it hurts and then whatever I thought I gained is gone. :(

I think Round Rhonda is walking around on another planet to. :lol:

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I think round Rhonda and round mia are walking around somewhere with skinny Donna. :lol:

Yay Susan for having fun on the first day! See, I knew they'd love you!

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am almost always cold- especially my hands and feet (and nose too)

I was going to wait till I caught up to post, but this made me laugh. :lol: When we were in college, my husband was driving and I leaned over and put my nose into his cheek. He asked what I was doing, and I answered that my nose was cold! I do this still, all winter, to get my nose warm!! :lol:

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Susan, I KNEW you'd do fine!

I am the same way as Rinne and Mia -- Adam used to call me the "incredible shrinking woman", but last week he stopped, he said it wasn't funny anymore. I don't know how tall you are, but I'm almost 5'8" and am down to 124 pounds ... it does feel funny trying on size 2 and size 4. I even zipped up a size 0 skirt at The Limited because the next size up they had was a 6, which was huge. I'd have bought it if they had a 2, the 0 was just a little small. My weight seems stable at the moment. I'd just like to be a couple pounds heavier than I am, I don't think I need to gain it all back. And, tell me, why is the chest the first place to lose???

My TMJ bone was very worn down. In my treatment they actually moved my jaw, now they are using braces to move my teeth so that my jaw stays in the right place. At night I wear an additional appliance that holds it in the correct position. I also used to grind, but I've been wearing appliances for so long now I can't anymore. I have NO JAW PAIN at all anymore. It used to be very bad. I have had TMJ problems since I was about 14.

Rachel, I agree -- Fibro, Chronic Fatigue, and IBS are all "we haven't a clue" diagnoses.

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I was going to wait till I caught up to post, but this made me laugh. :lol: When we were in college, my husband was driving and I leaned over and put my nose into his cheek. He asked what I was doing, and I answered that my nose was cold! I do this still, all winter, to get my nose warm!! :lol:

Mary (wife) is as hot blooded as can be, but her feet are always cold :huh: . On cold nights, if I'm in bed first I sometimes (too often) get accosted by two size 8 icebergs on my back in the crook of my knees. Talk about invigorating! I even bought her a nice pair of fleece socks to wear to bed, but I guess it is her revenge for...well, for my experiments in thermodynamics? :ph34r::o

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My husband either likes my frozen feet on him, or he's a good liar ... I think he likes it, he says he'll take whatever attention he can get.

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I was going to wait till I caught up to post, but this made me laugh. :lol: When we were in college, my husband was driving and I leaned over and put my nose into his cheek. He asked what I was doing, and I answered that my nose was cold! I do this still, all winter, to get my nose warm!! :lol:

That is SO cute (really!).

Yes- talking to someone was unbelievably emotional. Imagine if we ALL got together in a room. God- we would laugh, cry. I can't even imagine how intense it would be!

Rachel- as far as whether or nor Fibromyalgia is real, I'm not sure what I believe. I think that there IS a definition of it. If I remember correctly the material covering the muscles fascia (let me check), yep here it is:

http://www.selfcare4rsi.com/fascia.html

is like a big cobweb in your body that suspends everything and covers the muscles. This is what gets irritated. But I'm not sure if that's FMS or Chronic Myofascial pain.

From http://www.sover.net/~devstar/define.htm

Fibromyalgia is not yet considered a disease. Diseases have known causes and well-understood mechanisms for producing symptoms. FMS is a syndrome, which means it is a specific set of signs and symptoms that occur together. Syndromes are no less serious or potentially disabling than diseases. Rheumatoid arthritis and lupus are also classified as syndromes. Lab tests for FMS do not exist right now. Lab tests are valid only to check for co-existing conditions. You can have other conditions and also have FMS.

I think that last part is key!!!!!!!!

You figure with something like IBS and Fibromyalgia there has got to be a TRIGGER or an underlying cause. My doctor is pretty much of the school of thought that Fibrom is real but in MOST cases it's secondary to another problem. According to him, it doesn't happen for no reason! So, I think I'm with you in that I think what you're experiencing (the theoretical you) is real but the pain and symptoms are secondary to something that hasn't been discovered in your body yet.

Susie Q- :D:D:D:D:D:D:D Yay! Glad to hear the job is going well. Baby steps.

You should read some Anne Lamott. She wrote this book called Bird by Bird about writing. The opening story is her brother trying to do ba science report on birds and freaking out because he had so much to do. Her dad says to him, "'just take it bird by bird, buddy, bird by bird." Good advice for life!

You would also love her "Traveling Mercies" book. She has two paryers "Help me, help me, help me" and "Thank you, thank you, thank you". She is a smart woman and a HOOT! :D:D:D:D:D

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My husband either likes my frozen feet on him, or he's a good liar ... I think he likes it, he says he'll take whatever attention he can get.

I've been warming my cold feet on my husband's legs for years! He also says he likes it :D

I guess I haven't been married long enough! :P

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