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Rachel--24

Omg...i Might Be On To Something

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OK LAURA...THE FIRE TRUCKS ARE COMING TO HELP YOU AND 'YOUR NOT GOING TO BURN DOWN'

WE ARE HERE TO WATCH THAT FIRE WITH YOU.

WHAT A DREAM>>> WOW.

I'M SO GLAD YOUR MOM IS THERE WITH YOU TO WITNESS ALL THIS..KNOW IT'S HARD ON HER BUT HER SET OF EARS WILL COME IN HANDY..YOU KNOW AND CAN VALIDATE THE REAL SITUATION.

I KNOW YOU WANT AND NEED ERIC. I'M SO SORRY HE CAN'T BE BUT AT LEAST YOU DO HAVE YOUR MOM WITH YOU..I'M SO GREATFUL FOR THAT.

YOU ARE TRYING SO VERY VERY HARD TO SEARCH FOR THE ANSWER TO MAKE YOU HEALTHY..I JUST GET SO OVER WHELEMED THAT IT'S ' US WHO HAVE TO BEG FOR ANSWERS FROM DR'S WHO CAN'T HELP US AND JUST HURT OUR SELFESTEM WHEN YOU GO THERE TO GET MEDICAL EXPERTICE.

LOVE AND PRAYERS IS ALL I HAVE RIGHT NOW..STILL FUMING OVER THIS.

JUDY

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Thank you everybody, for the prayers. DH is going there tomorrow, and we'll see how things go.

Laura, I am furious at the doctor on your behalf. I swear, the medical community is so full of total A-holes, and I am convinced that we women are treated like hysterical subhumans by these egotistical, ignorant jerks. The more intelligent and informed we are, the more they try to bash us into what they think is our place.

If it makes you feel less alone, the dermatologist who (at my insistence) ordered the celiac blood tests LIED to me and said my results were normal--and my IgG was 3 TIMES the normal limit (and I had already been gluten-free for a month).

Oh--I was wondering if you have some kind of ESP? Because here in Pittsburgh a couple of days ago, the 911 system did not work for several hours. They have not yet been able to figure out why...

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I am so disgusted with the medical community right now. DISGUSTED. Luckily I had my mom with me ... she told me, we will find someone who can help you. We just haven't found that person yet. But we will. And I have to trust that. God says he will never forsake you....and I have to believe that. My body has forsaken me though---who do I talk to about that? :)

Laura,

Forget about that doctor....he SUCKS and one day you can give him a letter just like the one Rinne gave to her idiot Dr....telling him that you are much smarter and that basically he is incompetant. You know it, your mom knows it and we know it. Dont let the idiots drain you....they can suck the life right out of you.

Sheeeesh...this all brings out the anger I had for 3 years seeing the Dr.'s I was seeing. EVERY time I went with high hopes and EVERY time I left crushed...if not in tears. I think it was actually all very devastating on my health. Stress can do wretched things to our bodies....especially when we're already weak. Those idiot Dr.'s worsened my health with their words, with their lack of decency, with their medications and with their inability to *listen* to ME...the PATIENT...the one who is SICK. They didnt give a DAMN.

I dont mean to go on a doctor bashing rant but I guess I have alot of anger still inside me. :ph34r:

Laura....I know its not easy but dont let these guys get to you...the stress is the last thing you need. You'll come across doctors you'll want to go off on (like today), you'll find some who are nice and caring but dont have any answers and you'll find the one who will be smart enough to diagnose you. Shrug this guy off....make a mental note to send him a letter later on...and keep pushing forward.

Your appt. reminds me of the appt. I had with the infectious disease specialist. The WORST appt. I'd ever had. After 2 minutes the guy told me there was nothing wrong with me....that any improvements I'd experienced with diet changes was simply the "placebo effect". Everything was all in my mind and the only one who would ever be able to "fix" it would be a psychiatrist. He mocked me, laughed at me....even made the little gesture implying that I was crazy by circling his finger by his head. A real NICE guy....and yeah...this was the guy that refused to test me for Lyme...cuz NOTHING was wrong with me. :angry:

My entire 15 minute appt. consisted of me and this guy yelling at each other...how productive is that??

I was freakin livid...I had went there with high hopes and had spent $25 (my co-pay) just to have this pompous a$$hole tell me I would NEVER get a diagnosis because there was NEVER anything wrong with me....that it was all in my mind. I told him what I thought of him....how could he call himself a Doctor??? I told him even though $25 wasnt alot of money...I certainly felt I deserved every penny back because I didnt get what I paid for. His reply was "If you dont like it...theres the door." :blink:

THEN he said that I was just angry because I didnt like what he was saying....that I just wanted someone to agree with my imaginary illness.

When I left I was feeling everything that you're feeling today but in the end it took a toll on me...It REALLY affected my health because I am not strong enough to deal with that kind of stress. That day he took away the hope I was feeling and THEN I let him take even more from me by allowing his words to break my spirit.

He will definately get a letter from me....Its been in the back of my mind for a year and a half but he WILL get a letter from me when I'm ready.

I dont wana see your spirit get broken by idiots like this Dr....he's just one of many....he's obviously not the one who's gonna help you so just move on to better days and better doctors. Chin up girl...you're much smarter than that Dr. you saw today. :)

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Just to add:

from the Journal of Clinical Immunology, written by an expert in EOS: Interestingly, despite the common finding of food-specific IgE in patients with EGIDs, food-induced anaphylactic responses only occur in a minority of patients. Thus EGIDs have properties that fall between pure IgE-mediated food allergy and cellular-mediated hypersensitivity disorders (eg, celiac disease)

(point being, that it CAN be "true" allergies, or it can be intolerances, or both)

check out the figure on page 2 (page 2 of the PDF file, bc the file is 18 pages long) but it is page 12 of the journal. Figure 1 (sorry, I couldn't post it)

http://download.journals.elsevierhealth.co...74903025314.pdf

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thanks Rachel I would like that URL to read up on the problem. Is vancomycin a relative of penicillin, have problem/ that?

Evie...I'm having trouble posting tonight so I apologize for the delay.

Heres the link for the C.Diff board...

http://www.cdiffsupport.com/phpBB/index.php

I dont know if Vancomyacin is related to penicillin...it shouldnt be hard to find out though. I'm guessing no...but this is just a guess.

I will pm you the link as well in case you dont see this.

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Fiddle..wishing your hubby well on his journey to see his mom.

prayers are with you

judy

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I think we could add pearls to the Laughing Lyme Ladies ensembles and pearls are lovely with blue too. :)

No pearls for me... :P

Pearls would look all wrong on me...it would be quite scary I think. :unsure:

I will be the "pearl-less" Laughing Lyme Lady....but I do want to wear blue. :)

Rinne....the Samento seems promising. I keep reading good things about it. I really think my Dr. is gonna want to use this type of treatment for me. I cant wait to find out how it works for you. :)

sounds like a real lunk-head :angry:

Patti said lunk-head :lol::lol:

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This is the message I left my doctor who said to me, "you don't have Lyme Disease, I'll refer you for a test for it but then I'm done with you" and as she said it she threw her hands up in the air. :lol::lol:

1) I have a diagnosis of Lyme Disease.

2) I am grateful that I am smarter than you.

3) I think you are a danger to your patients.

ROFLMAO

Rinne....I just cant get enough of this!!! :lol::lol:

Especially #3....I LOVE it!! :D

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Laura,

Obviously, this guy has spent so much time looking at a$$holes, that he actually became one! Is this guy vying for the "I Am The Doctor Most Like House" award?

It is simply unfathomable that a doctor would treat you that way. Why doesn't it surprise me though? Really, it's because of flaming jerks like this guy that we go undiagnosed for 11 years.....

My hunch is this: When he started preaching to you about most likely not having Celiac due to not having the genes, etc..... and you shot right back that you were one step ahead of him and had that testing already done to confirm the genetics, that pissed him off because he knew he was dealing with a patient who actually armed themselves with some knowledge, instead of being sheep being blindly led to slaughter. Some doctors can't handle that - they're perfect world would be a world without internet and without the capacity for us to learn for ourselves what could be wrong, and instead, just put all our faith in them and their God mentalities......

Don't let him get to you - be too freakin' stubborn and say to yourself "You Son-of-A-______, you are not going to get the best of me....." and move on.

You know two things:

1) You are right.

2) He is wrong. He is an idiot. He is a pompous ass. He is an egotistical SOB.

(Okay, I elaborated a little bit more on point 2....... LOL! ;) )

Sending lots of hugs your way,

Karen

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Went to lunch, had some wine, :ph34r: laughed and got incredibly silly. had SO Much fun. doing it again for my birthday in a few weeks. With more people. Mom's paying. ;) Am taking the dingos on a SECOND walk today, they are just flummoxed and bewildered but incredibly joyful.

Susan...I love it when you have these joyful days. :)

Having wine and getting silly sounds like alot of fun and if I cant do it....I'm sure glad someone can.

Hope you're having more spooky fun at your bro's. :)

Obviously, this guy has spent so much time looking at a$$holes, that he actually became one! Is this guy vying for the "I Am The Doctor Most Like House" award?

:lol::lol::lol:

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Laura,

Forget about that doctor....he SUCKS and one day you can give him a letter just like the one Rinne gave to her idiot Dr....telling him that you are much smarter and that basically he is incompetant. You know it, your mom knows it and we know it. Dont let the idiots drain you....they can suck the life right out of you.

Sheeeesh...this all brings out the anger I had for 3 years seeing the Dr.'s I was seeing. EVERY time I went with high hopes and EVERY time I left crushed...if not in tears. I think it was actually all very devastating on my health. Stress can do wretched things to our bodies....especially when we're already weak. Those idiot Dr.'s worsened my health with their words, with their lack of decency, with their medications and with their inability to *listen* to ME...the PATIENT...the one who is SICK. They didnt give a DAMN.

I dont mean to go on a doctor bashing rant but I guess I have alot of anger still inside me. :ph34r:

Laura....I know its not easy but dont let these guys get to you...the stress is the last thing you need. You'll come across doctors you'll want to go off on (like today), you'll find some who are nice and caring but dont have any answers and you'll find the one who will be smart enough to diagnose you. Shrug this guy off....make a mental note to send him a letter later on...and keep pushing forward.

Your appt. reminds me of the appt. I had with the infectious disease specialist. The WORST appt. I'd ever had. After 2 minutes the guy told me there was nothing wrong with me....that any improvements I'd experienced with diet changes was simply the "placebo effect". Everything was all in my mind and the only one who would ever be able to "fix" it would be a psychiatrist. He mocked me, laughed at me....even made the little gesture implying that I was crazy by circling his finger by his head. A real NICE guy....and yeah...this was the guy that refused to test me for Lyme...cuz NOTHING was wrong with me. :angry:

My entire 15 minute appt. consisted of me and this guy yelling at each other...how productive is that??

I was freakin livid...I had went there with high hopes and had spent $25 (my co-pay) just to have this pompous a$$hole tell me I would NEVER get a diagnosis because there was NEVER anything wrong with me....that it was all in my mind. I told him what I thought of him....how could he call himself a Doctor??? I told him even though $25 wasnt alot of money...I certainly felt I deserved every penny back because I didnt get what I paid for. His reply was "If you dont like it...theres the door." :blink:

THEN he said that I was just angry because I didnt like what he was saying....that I just wanted someone to agree with my imaginary illness.

When I left I was feeling everything that you're feeling today but in the end it took a toll on me...It REALLY affected my health because I am not strong enough to deal with that kind of stress. That day he took away the hope I was feeling and THEN I let him take even more from me by allowing his words to break my spirit.

He will definately get a letter from me....Its been in the back of my mind for a year and a half but he WILL get a letter from me when I'm ready.

I dont wana see your spirit get broken by idiots like this Dr....he's just one of many....he's obviously not the one who's gonna help you so just move on to better days and better doctors. Chin up girl...you're much smarter than that Dr. you saw today. :)

Rachel, that is an incredible post and should in some variation be in the very beginning of your book. You have articulated so well what I was trying to get at with "it takes energy to hope". I would like to see you sue that Doctor big time, look at the cost to your health and your finances his refusal to test you for Lyme cost you. It just occurred to me though that if they had tested you through any of those other labs you might have gone for years thinking that you didn't have it given how unreliable they are.

I know the day the doctor threw her hands up in the air I felt her fear and her anger with me and I really looked at her, her posture was bad and she looked depressed liked she slumped out of a lack of energy, she was overweight with that unhealthy kind of extra weight that seems to pool around her, she had dark circles under her eyes and she seemed harried. I know that when I spoke to her that although I was polite there was contempt in my attitude. I was seriously angry because I had remembered the rash. I remember thinking afterwards that I was glad I was a confident person who couldn't be intimidated by such a bully and knowing that many women are bullied and belittled and made ill by it. I am sorry it happenned to you Rachel.

It is so important that we learn how to protect ourselves from these kinds of assaults and they are assaults. I'm not willing to waste my time on anything less than being direct with them, I figure if they can't handle it I am wasting my time.

I had my own waterloo with the medical system when I was a very young woman and pregnant. I received no real care to speak of and ended up with toxemia, pre-eclampsia and a C-section. It was a nightmare and I have never trusted them since.

Laura, I'm really glad that your Mom is there for you. Have you been able to talk with Eric?

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MMMMmmmmmmmm :ph34r: Lyme. :ph34r:

Rinne....you kill me! :lol::lol:

Rachel, I drank three glasses of white wine last Friday night, got a little tipsy and too talkative, had fun and was a little achy and hungover from it and I won't do it again until Christmas but even now I can get away with it. You will for sure be able to indulge again, you'll just know that you'll have to pay for it, maybe just a small price but then maybe you won't be needing to indulge quite so much. :)

I havent had a drink for about a year and a half now...maybe longer. What was happening was that sometimes when I'd be out drinking and then seeing myself in a mirror...I was noticing that I was looking *sickly*.....like my skin color looked GRAY. :huh:

Not to mention that the alcohol was affecting me WAY more than it ever had. I used to drink more than most people my size could handle and NOT feel the slightest bit drunk. All of a sudden one drink was too much and I was sufferring BAD hangovers for the first time ever. This was all going on when I was still eating a regular diet of fast food and nothing healthy....before I clued in on the diet changes.

I think my liver is not handling all these toxins well at all. The alcohol thing really stands out in my mind....not to mention all these chemical sensitivities. I think its all got to do with my body's inability to detox. The Dr. said that Lyme spits out toxins....creating a highly toxic environment.

Rinne...do you think this is true?? Could the Lyme create such a burden on my liver?? Obviously mercury and other things have a part in all this but I'm wondering how much damage could Lyme alone cause??

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It just occurred to me though that if they had tested you through any of those other labs you might have gone for years thinking that you didn't have it given how unreliable they are.

Rinne...the new Dr. already told me that even if the Infectious Disease guy had ordered the test (he said they rarely do) he would not have used a reliable lab. The Infectious Disease guy was at Kaiser (HMO)...he said these DR.'s NEVER use Igenix. He said my results would likely have been negative even if I'd been tested. He said they often lie about the results...not because they want to be deceitful but because they truelly dont believe anyone gets Lyme. When they see a positive result....they dont believe it. Just like what it said in that link I provided.

Those Dr.'s had Igenix investigated because they didnt *believe* the results. They have egos and they seem to be unable to accept that they arent as "all-knowing" as they once thought. How dare another Dr. come along and CORRECTLY diagnose a patient that they have dismissed as being hypochondriach. How dare they aquire this diagnosis from a BETTER lab. There simply cannot be a BETTER lab...so they try to debunk Igenix. Arrogant SOB'S.

Rachel - Yes, I think in the future you'll be surrounded by health and nightclubs and costumes and dancing (and maybe a few drinks) That's my official prediction.

Thanks Mango...I cant wait...I miss it all. I'm not really the homebody that I've become the past few years but I'm making the best of it. :)

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No pearls for me... :P

Pearls would look all wrong on me...it would be quite scary I think. :unsure:

I will be the "pearl-less" Laughing Lyme Lady....but I do want to wear blue. :)

Surely if my dingo can wear pearls, we can find some for you ;) ha ha just kidding. we will not force any rules, stylistic or otherwise, on anyone in our Lyme club (um, I don't even HAVE Lyme but want to join)...and I am not going to wear royal blue ever but Celadon green, my favorite color. :)

Susan...I love it when you have these joyful days. :)

Having wine and getting silly sounds like alot of fun and if I cant do it....I'm sure glad someone can.

Hope you're having more spooky fun at your bro's. :)

:lol::lol::lol:

It was a very good day, and spooky fun there indeed as he did his famous annual vomiting pumpkin in the carving ensemble, the headless baby laying on the dead dummy mannequin, spooky music playing, the headstones....the usual. It's his favorite holiday and he has five daughters and he is a giant goofball. :lol:

Bev - thank you for your sweet words....you know, there are days, when that horrible fog washes over me, that I lament my entire life....there are times I DEEPLY wish I had removed gluten decades ago, because I just SEE Things so differently now, it is astonishing.but now the days are better and better and many more good than bad, and I think it was all for a purpose and a reason.......just not QUITE seeing it yet. :huh: but I can tell you that I have so many friends, and friends of friends, call not just on their good days but also when in deep psychic crisis and somehow we can always work to see how each situation may have a solution, or how things can be waited out, prayed over, or worked through.....having been in HELL for most of my life and at MIDDLE-AGE finding my way out of the fog I think has been a great and incredible encouragement for my lifelong friends (and family).

LAURA - I am simply out of words for you. I wish you could see my GI, he is SO SO wonderful, and so kind. You are half my age, your life is ahead of you and I think your future will be quite bright, and not from the flames of a burning house. :huh: Just keep searching and hang on, sometimes the answers do take longer in coming, much longer than our own earthly timing would demand, just press on and take heart.

Where is Julie? I hope she's feelign okay.

What did Patti say? lunk head? :lol: Hope you're feeling better.

I have got a rager of a headache from the wine today and forgot everything else I wanted to say. ugh. off to bed.

hello and good night to you all, dear ones. :)

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You know what's funny about those crackers? I always Rachel them! Always! I don't normally Rachel things either...but there's something in those crackers....(I don't eat them anymore though, in honor of this thread... :P )

OMG...I totally have the same problem with Racheling those crackers. A whole package is gone when I only planned on having a few. :blink:

Well...I cant say for certain that its something in the crackers....cuz of my problem with Racheling *everything* but who knows?? :huh:

Maybe the alien baby is doing this...maybe he requires large amounts of food and normal size servings are just not enough to satisfy him?? Yeah...I think its definately out of my control. :P

Where is Julie? I hope she's feelign okay.

I was wondering the same thing.

Do you think she decided to go for the Edward & Son's afterall?? :o

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OMG...I totally have the same problem with Racheling those crackers. A whole package is gone when I only planned on having a few. :blink:

Well...I cant say for certain that its something in the crackers....cuz of my problem with Racheling *everything* but who knows?? :huh:

Maybe the alien baby is doing this...maybe he requires large amounts of food and normal size servings are just not enough to satisfy him?? Yeah...I think its definately out of my control. :P

yes, what is the DEAL with this? I want to Rachel EVERYTHING....I have never enjoyed food so much since going gluten-free, and now, I want to eat vast quantities of anything.....I know I did lots of mindless binge eating before and it didn't matter (didn't gain weight), but now......holy heck, I do not have an alien baby but I've got a food baby I"m feeding, I think it's about four months along, and growing...... :ph34r: WHY do I want to eat ENTIRE BAGS of things now? :ph34r: Sheesh, can't even keep chips/snacks in the house, will take them to bed at night and eat them all......need a Dave here to lock things up......

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I wanted to give my best to evie, I am so sorry you have been so ill with the C Diff :( Please take good care of yourself :)

Fiddle Faddle, my thoughts are with you and your family :)

Laura, also wanted to chime in on your appt today. I am so sorry that you had to go through that. I agree that you have to let it go, put it behind you and move on. I know it's hard because it hurts, and you feel like you, and your health situation, is not being validated. Focus your energy on moving forward :) I think it will be a matter of finding the right person to work with and I feel they are just around the corner for you. Best of luck with everything tomorrow and keep us posted.

Susie, sounds like you had a fabulous day today :)

Thanks everyone for all the humor today in your posts :):)

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Totally off topic.....

Susan....these BULLDOGS that we root against....are they Georgia Bulldogs??? :unsure:

My hat that I wear to work....it's red with a "G" on it. All the time I get these male customers going "Oh...a Georgia fan!".

Ummm...no...the "G" stands for GIRL. :lol::lol::lol:

I get it all the time...me and Georgia have nothing in common and I'm sooo over it. :rolleyes:

Anyways, today this guy goes "GEORGIA BULLDOGS....you're a BULLDOGS fan!!" :blink:

I got all defensive...I think I hate the BULLDOGS..... I think I am wanting them to LOSE every game they ever play. I am certainly NO bulldog fan. The "G" stands for GIRL. :lol:

MANGO IS GOING CAMPING WITH REAL DINGOS!!!! :rolleyes::lol:

Are REAL dingo's like kangaroos??? :unsure:

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I was wondering the same thing.

Do you think she decided to go for the Edward & Son's afterall?? :o

I just posted :lol:

No, I didn't go for the crackers afterall. I got too many "nays" so I figured I probably shouldn't have them <_< They are so good too. Why can't they just make a stinkin rice cracker with no cc.

Have been weepy again today, I'm listening to music with lyrics like:

"Nothing's gonna save me.

I'm hanging from the nearest tree.

I heard the world up, late night.

Holding my breath tight, trying to keep my head on right.

There's a chill in the air, nobody could care.

How you're caught up in the fight of your life."

Being sick sucks! I think it's time we pull out my punching bag and go a few rounds. I know Laura is prolly up to it?? We can put your doctors face on it Laura! Oooh and we need to add the word "lyme" to it now, and "Edward and Sons Rice Crackers", and evie's "C Diff"......and the alien baby :lol:

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OMG Rachel, please don't hate the Georgia Bulldogs, they have done nothing wrong :lol::lol::lol: Silly, it is the FRESNO STATE Bulldogs, and they are playing tomorrow night, everybody...... :lol::P You know what that means, we must implore the football Gods once again.... ha ha ha ha ha ha! :P

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Uh - this was not the right place to post about camping huh? :ph34r: I was so worried about the dingos I wasn't thinking about any other aspect of it. How dumb am I? I've been researching insect repellent though...and yes I will use lots.. :D

Camping talk is always fine with me. Have I metioned my LOVE for camping?? Camping with all the amenities...of course. My camping days are NOT over...I may *look* a little strange with all my protective gear and stuff that I learned from Susan and Beverly about tucking pants into socks and such....

Nevertheless....I will STILL camp....probably not with dingo's though. ;)

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JUUUUUUUUUUUUUUULLLIIIIIIIEEEE

what is that crazy sad song you are listening to??? :huh: I do it too.....sad music for sad days....used to listen to the saddest song of all, Peter Gabriel "Mercy Street" - - don't even ASK me what that one's about, it is too tragic.....I hope you feel better and not so weepy soon, sweetie. NO CRACKERS! hey, do you have a Trader JOe's nearby? did I already tell you about the totally non-CC rice crackers there? they are quite good, but I have never had Edward and Sons so can't compare.

Why am I still here? I thought I was going to bed? :blink:

My dingos are the BEST campers....they don't even make a sound when a bear comes into our site. They are smarty-smarts ;) And once, we were in this gigantic campground, way too many people for my liking but went w/ friends, and my sweet dogs were complimented by the rangers for their exemplary behavior. Made the other dogs look like savages, they did. ;) (we have a battery-operated noise machine in the tent and we give Stinker many tranquilizers as she is a bit on the neurotic side, overly attentive to the night-noises, and finds herself insomniatic and overly alert when sleeping in the wild :lol: )

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OMG Rachel, please don't hate the Georgia Bulldogs, they have done nothing wrong :lol::lol::lol: Silly, it is the FRESNO STATE Bulldogs, and they are playing tomorrow night, everybody...... :lol::P You know what that means, we must implore the football Gods once again.... ha ha ha ha ha ha! :P

ROFLMAO :lol::lol:

OH....ok...I'm glad I dont *appear* to be rooting for the BAD team. Georgia...GOOD...Fresno...BAD. Got it. ;)

(we have a battery-operated noise machine in the tent and we give Stinker many tranquilizers as she is a bit on the neurotic side, overly attentive to the night-noises, and finds herself insomniatic and overly alert when sleeping in the wild :lol: )

:lol::lol:

Being sick sucks! I think it's time we pull out my punching bag and go a few rounds. I know Laura is prolly up to it?? We can put your doctors face on it Laura! Oooh and we need to add the word "lyme" to it now, and "Edward and Sons Rice Crackers", and evie's "C Diff"......and the alien baby

Julie....yeah being sick does suck. I get in "sad song mode" too sometimes. I hope you are back to yourself very soon. :)

PHEW....I'm glad you resisted those temptuous crackers. ;)

The PUNCHING BAG!!!! Had forgotten about this....YES....sooo many new words to add to my bag...

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