Omg...i Might Be On To Something

[Judyin Philly]

I see you guys too.

nothing to add really than to give some hugs

just came on to ck PM's to see if Evie's daughter posted to me but she didn't.

I'm past worry now. I'm really afraid Evie didn't make it. Don't want to be negative but it just scares me.

nite all..in a minute..any of you have feelings about this or is it just me?????being a worry wort????

judy

[AndreaB]

I don't know Judy. They said they were hoping to come hope on Tuesday. When my Dad was in the hospital he wound up being in for a few more days than he thought he would be.

[Judyin Philly]

I know and with breathing problems on top of it all she might need more time and i keep thinking the poor daughter is probably so tired if she's at the hospital all day but i don't know any facts for REAL.

she was posting about 10:30-11 to me.

let's just hope she's busy with her mom.

judy

[AndreaB]

Yes, let's hope she's just been spending time with her Mom. I'm sure she's tired too. I'll keep praying for Evie.

Thanks for all you do Judy.

[rinne]

These should be the 10 commandments of Rachelville!! All in favor???

Rachel, yes I am in favor, these are great and I love your comments. Thanks for posting them.

I had one "friend" suggest that I might get better if I left my husband based on a friend of hers, who had been diagnosed with MS (bells ringing for me, MS a common misdiagnosis of Lyme and she is from a Lyme hot spot in the province) who had a complete remission of her symptoms after she left her husband. I have always been a pretty independent person, married or not, but at this point the truth is I really need my husband to support me and a suggestion like that just amazes me. I know I am not far away from saying, "what kind of idiot are you?"

I am concerned about Evie too but am hopeful that they just needed to keep her a another day of two. I know much of my concern comes from the tone of Evie's last post, when she said she felt very weak I felt her concern, did anyone else have that feeling? Judy is that what you mean?

Susan, a horrifying story of drugs gone wrong in that young girl's body. Will she recover further over time?

It makes me cry to think of how stupid we are.

[Rachel--24]

I am concerned about Evie too but am hopeful that they just needed to keep her a another day of two. I know much of my concern comes from the tone of Evie's last post, when she said she felt very weak I felt her concern, did anyone else have that feeling? Judy is that what you mean?

I felt the same way about her last post Rinne....it really worried me. Also I read alot about C.Diff earlier in the year because they put me on antibiotics for it after they detected it in my stool. C.Diff is really scary....I never was sick from it but I read alot of pretty scary stories. So yeah...I am very very worried at this point.

Susan, a horrifying story of drugs gone wrong in that young girl's body. Will she recover further over time?

Yeah....before reading that story I was a little scared of antibiotics....but now...OMG.

Anyone know how Laura is doing? Is today the day for her EOS test??

[jerseyangel]

I loved that list, Rachel--thanks for posting it. It's like the story of my life

Susan--my gosh how horrible!

I hope that Evie is still hanging in there--bless her heart.

Andrea, You are one of the most understanding, supportive people I've ever met.

Rinne, Where do people come up with this stuff! Jeesh What kind of idiot, indeed.

I think today is Laura's test--it's been a week since she began the diet challenge.

Hi Judy--glad you checked in

Carla--are you ok?

[CarlaB]

Carla--are you ok?

Thanks for asking. I was feeling awful yesterday ... don't know how today's going to turn out. I have a meeting this morning, so I'll be out for a while.

[jerseyangel]

Thanks for asking. I was feeling awful yesterday ... don't know how today's going to turn out. I have a meeting this morning, so I'll be out for a while.

Ugh--too bad you have to go out when you're not feeling well Hope today is better

[Mtndog]

Quick drive by.... Rachel- that list is GREAT! I also like spoon theory:

Open Original Shared Link

I hope Evie is OK. The C Diff over the summer scared the beejeezus out of me! Among other things.

Susan- that story is so scary. It just goes to show you that those staistics (1 in 400,000 people will develop X serious side affect) are not statistics. They are PEOPLE.

I'm glad you're feeling a little bit better too

Andrea- Been thinking lots about you and your dad and will continue to do so. many many prayers, love and hug your way.

Patti- You look gorgeous. In our case, I guess the "It's not how you feel, it's how you look and darling, you look marvelous!" applies in an even more special way.

[rinne]

Hi Patti, love the new picture of you, you are looking very sharp.

I was wondering about our happy girl too.

Andrea you are one of the kindest and most supportive people, you are not an idiot.

[jerseyangel]

Beverly,

Aren't you sweet And, right back at ya

[dlp252]

These should be the 10 commandments of Rachelville!! All in favor???

My personal favorites....#1...2...3....5 and 9.....these apply most in my life since I got sick.

#1 2 and 5 make me want to get violent.

Julie...this is when I would need my punching bag!

I LOVED this!!! I'm sending it off to my friend who is chronically ill with fibro.

[jerseyangel]

Thanks, Rinne

Andrea=definately not an idiot

[dlp252]

I am concerned about Evie too but am hopeful that they just needed to keep her a another day of two. I know much of my concern comes from the tone of Evie's last post, when she said she felt very weak I felt her concern, did anyone else have that feeling? Judy is that what you mean?

Yep, I got that feeling too.

[miamia]

Rachel-

Great list i think i may print it out and hand it out to my friends and family

I got a pm from laura yesturday today is her test she said shes actually been feeling ok- Which may not be a good thing for the eos test- but is still good to hear

Miamia

[dlp252]

I got a pm from laura yesturday today is her test she said shes actually been feeling ok- Which may not be a good thing for the eos test- but is still good to hear

Miamia

Thanks Miamia! Glad at least she hasn't been totally miserable throughout the challenge period.

[Mtndog]

Andrea=definately not an idiot

I second this!

nary an idiot on this thread! (Nary was a word for Susie Q cuz she always cracks up when we use words like conundrum, heinosity and such chicanery).

Actually Conundrum picture on this link:

Open Original Shared Link

Now that's my kind of vino!

[rinne]

Open Original Shared Link

Dear Friends,

Chronic Lyme disease has been banished as a disease! No conventional or alternative treatments are recommended! Doctors cannot make a clinical diagnosis anymore!

It is time for patients to fight back! Your participation is critical! Numbers count!

Patients are already being cut off. Doctors are backing off treating. There is no wiggle room in the new guidelines.

Guidelines impact:

Diagnos is no longer clinical, only by CDC positive surveillance blood test or EM rash.

Chronic disease will increase since 50% of Lyme cases will be missed.

Insurance companies have basis to deny coverage for all treatment for chronic disease.

State medical boards have strong basis to attack our doctors.

Family services have strong basis for custody cases.

School districts have strong basis for not addressing special needs of students with chronic Lyme.

"Diagnosis is no longer clinical, only by CDC positive surveillance blood test or EM rash." Just think what that really means.

[dlp252]

Open Original Shared Link

"Diagnosis is no longer clinical, only by CDC positive surveillance blood test or EM rash." Just think what that really means.

[jerseyangel]

Open Original Shared Link

"Diagnosis is no longer clinical, only by CDC positive surveillance blood test or EM rash." Just think what that really means.

Oh my

[Fiddle-Faddle]

But You Don't LOOK sick....

10 commandments for interacting with the chronically ill

1. Thou shalt not imply that we are not truelly ill.

You will not convince us otherwise with remarks such as, "You LOOK good," or "But you don't LOOK sick". Even if you mean them as compliments, we perceive those kind of statements as insults because they imply that you do not believe us.

2. Thou shalt not imply that the illness can be easily fixed.

People with chronic illness are persistent, if nothing else. We hang on, day after day.We see countless doctors, take numerous medications (not the R-villians though), do endless research, and continue hoping that the answer is just around the next corner. So please do not insult us by delivering diagnoses, remedies, or comments such as, "Why dont you just...." or "Have you tried..." or "You should..." If it truelly were that simple, I assure you that we would have done it already. We are sick, not stupid.

[

Wow--Great!!!! I especially love #1. That's just basic human decency for any situation, not just chronic illness. I remember being told when I had severe hyperemesis and had to be IV'ed because I couldn't even keep water down, everyone kept saying, "You can't be sick, you look great!"

I do have a quibble for #2, though. I wish someone would have said, "Why don't you look into gluten intolerance?" 19 years ago when my thyroid first went kaflooie. And I am now saying it to everyone I know with Hashimoto's, rheumatoid arthritis, IBS, fibromyalgia, etc. Most of them have a visible light bulb over their head when I describe typical symptoms of celiac, except for one colleague who is on his third bone marrow transplant for non-Hodgkin's Lymphoma. He was very offended that I suggested he look into gluten intolerance. He says he's never had any symptoms, so why should he get tested.

Unfortunately, I think it's one of those you-have-to-kiss-a-lot-of-frogs situations. 99 people will give us totally garbage suggestions--but then one will give us The Answer--and if we tell them all not to make suggestions, we will miss The Answer.

Aside from that, do you think Scott might post these on www.celiac.com if we all ask him to?

[Judyin Philly]

QUOTE(rinne @ Nov 15 2006, 01:26 AM)

I am concerned about Evie too but am hopeful that they just needed to keep her a another day of two. I know much of my concern comes from the tone of Evie's last post, when she said she felt very weak I felt her concern, did anyone else have that feeling? Judy is that what you mean?

Rachel-

I felt the same way about her last post Rinne....it really worried me. Also I read alot about C.Diff earlier in the year because they put me on antibiotics for it after they detected it in my stool. C.Diff is really scary....I never was sick from it but I read alot of pretty scary stories. So yeah...I am very very worried at this point.

**************

hi all

yep this is what i meant can't do the 2 quotes here sorry.

yes the last post from her sounded like she was so weak.

all the past talk of c-diff and you guys warning me this past summer..and my dr who was so worried i would get it..i was so scared that i NEVER LOOKED IT UP ha for me that was scared...

well there is nothing we can do here now but keep the good thougts and prayers going i guess.

if i hear you know i'll post.

love

judy

good luck today LauraJ our happy girl.

[DingoGirl]

I second this!

nary an idiot on this thread! (Nary was a word for Susie Q cuz she always cracks up when we use words like conundrum, heinosity and such chicanery).

Actually Conundrum picture on this link:

Open Original Shared Link

Now that's my kind of vino!

Um, ahem, would just like to clarify that it was our dear Patti who used the word Conundrum. And yes, that is a good wine.

I didn't want to mention this before.....but C. Diff does kill one-third of patients who get it. Yes, I am beyond worried too....Judy I know you'll let us know as soon as you hear anything.

And, the reaction to antibiotics is FAR higher than 1 in 400,000 - - - the numbers are shocking, actually, for the particular one that my friend's daughter was on....it is so common and I have forgotten the name....there are huge lawsuits against the manufacturing company.

[AndreaB]

I had one "friend" suggest that I might get better if I left my husband based on a friend of hers, who had been diagnosed with MS (bells ringing for me, MS a common misdiagnosis of Lyme and she is from a Lyme hot spot in the province) who had a complete remission of her symptoms after she left her husband.

I am concerned about Evie too but am hopeful that they just needed to keep her a another day of two. I know much of my concern comes from the tone of Evie's last post, when she said she felt very weak I felt her concern, did anyone else have that feeling? Judy is that what you mean?

I was going to say I'd be really concerned by Friday......now I'm very concnerned after reading the rest of the posts about c-diff. I'm so not in the know about these things.

Susan, a horrifying story of drugs gone wrong in that young girl's body. Will she recover further over time?

It makes me cry to think of how stupid we are.

I didn't realize antibiotics could do that kind of damage. I hate taking meds unless they are absolutely necessary though.

I think today is Laura's test--it's been a week since she began the diet challenge.

I was going to say today or yesterday......miamia solidified the date.

Thanks for asking. I was feeling awful yesterday ... don't know how today's going to turn out. I have a meeting this morning, so I'll be out for a while.

Sorry you have to go out this morning. Hope you feel better.

Andrea you are one of the kindest and most supportive people, you are not an idiot.

You may change your mind if I have to many nights like last night. Seth was up or just dozing from 10:45-1:45. Zzzzzzzzzzzzzzzzzz

Open Original Shared Link

"Diagnosis is no longer clinical, only by CDC positive surveillance blood test or EM rash." Just think what that really means.

This is NOT good news. Why must CDC cause so many problems. Fill our kids with too many toxins and refuse proper treatment for our illnesses.

Anyone think the statement "this world is going to hell in a handbasket" fits. (Is that the right phrase....something similar if not)

I didn't want to mention this before.....but C. Diff does kill one-third of patients who get it. Yes, I am beyond worried too....Judy I know you'll let us know as soon as you hear anything.

I'm concerned now. I'm really concerned now. Yes, her last post sounded scared/worried about her condition.