TO THE GROUP

[Guest guest]

HI Judith,

Sure understand your frustration. Hang in there.

An abscess most probably is making you very sick, and it needs to be

dealt with. And you've really got to find someone who'll do a needle

aspiration on it and have it cultured, through Esoterix, or some

reliable lab (although who that would be, I wouldn't know. I know the

Mayo clinic will culture and i.d. an organism, but they don't do

sensitivities, so that's almost as bad as having no information).

This IS the perfect opportunity to find out what kind of infection

you're dealing with and get proper treatment.

Where do you live? Maybe I know someone in your vicinity?

penny

p.s. I apologize to everyone if I'm repeating myself. I've got so

many people asking me questions that I can't remember what I post

here and what I post privately or on other lists. Brain fog's still

pretty strong. :-)

> This a.m. early I opened up my juno acct, read quite a number of

> posts, many of which were group posts, some backchannel. I

replied.

> And then when I went to send them (repeatedly) I get a message from

> dear Juno that something is amiss and it's not connecting to juno's

> central computers.

>

> I could go in and cut and past and send them here from . But

as

> they indicated I think the wisest thing for me to now do (after

> writing and reading for a while (from our group) is to reach

Esoterix

> labs and see if they can be helpful re how to get a specimen from

my

> tooth abscess , since I have my dental appt tomorrow!!!! And

frankly

> I'm afraid to put it off though like someone else on the list I'm

> afraid to have it worked on!! with all this new info. But I fear

> the abscess might be making me sicker and have had other abscesses

in

> the past and don't remember the dealing with them via root canal

> making me sicker. Though my memory might be inaccurate since at

the

> time I wasn't attuned to the problems with root canal and/or CNS.

>

> I'm taking this risk rather than postponing, which is another

risk.

> I'll try my hardest to get it cultured properly though given what

> some of you/one of you said that might not be possible.

>

> So, until I can get the posts to the group without using up the

> energy it would take to cut and paste and send from here I'll sum

up

> this:

>

> I want to thank so many people for their kindness and for their

> information. I am teary eyed at your suppport, because I've felt

> like a sad-sacky type jerk baby expressing such overhwhelmedness.

>

> We are in such difficult situations re knowledge and care many of

> us. It is horrendous. If I hadn't been ill and doing so much

> research and trying so many things for so many years or wasn't so

> broke and had a support system that I fear is weary though very

> caring I'd be more independtly proactive and less anxious and sort

of

> paralyzed psychologically.

>

> I did get the phone #s of two LLMDs who might take Medicare. They

> are not nearby enuf ufor me to get there on my own , which is a

> biggie.

> I will contact esoterix today. I have faced up to the fact that my

> immunologist no matter how smart was very unrealistic with himself

> and thus me that he could and would absorb the info needed to

> evaluate and help treat me. (He now wants to stop after 3 IgGs and

> won't call any of the docs I gave him who use it, even though my

> last treatment gave me significant but short -=lived help.

>

> So I really have to search for another doc who is CFS savvy or

really

> willing to work with me and can give the time as it is time

consuming.

>

> I'm still quite scared. I have more posts to read. But of those I

> did read I did get some very good help. And we have to remember

that

> this is all new territory and it's insane that we have to rely on

one

> another for this info.

>

> BTW, the preserv rfree lido sans epi is made by Abbott.

>

> I'll hopeuflly send the posts I wrote. It's so frustrating not to

get

> back properly after all of the information and decency and

> compassion. It really makes me want to hand in with more

> determination, just knowing that others feel similarly and others

> took the energy from their own difficult situations to care.

>

> Judith Wisdom

[Guest guest]

In a message dated 10/16/2003 1:15:47 AM Central Standard Time,

ptforme2002@... writes:

> They said go for it Mom we are behind you all the way. My youngest

> daughter is going to come to some of the group meetings with me.

>

> I have come half of the full circle to complet my journey to my new life.

>

> Barbara

>

Barbara,

I think the family is worried about losing you. When you explained the

reasons...Better health and new and improved mom, then they understand. They

haven't walked a mile in your shoes and don't understand how hard being MO

is. I can't at this point in my loss understand why I didn't do this sooner.

Maybe I'd be down further than I am now. I guess God does everything in his own

time.

[Guest guest]

> To the group:

>

> I have been online for since july reading your emails and hearing

such wonderful things about all the support that different ones of

you have had. I have felt lost and alone. I haven't had that. I

wasn't able to get my family to understand how important this surgery

was for me. My son has said he want me to do what is best for me and

my health and that he was there for me. Since my visit with Dr. K on

Monday I sat down my two daughters and the white binder which now is

my Bible and explain everything and how this was for my health and my

future. They said go for it Mom we are behind you all the way. My

youngest daughter is going to come to some of the group meetings with

me.

>

> I have come half of the full circle to complet my journey to my new

life.

>

> Barbara

What a wonderful post Barbara.

Congrats on the decision, you wont regret it, Just hang on , it is

one heck of a ride! And the ups are wonderful!

It is so great to get the supoort you are going to need from your

family too.

Sharon in Onyx

[Guest guest]

In a message dated 10/15/2003 11:12:19 PM Pacific Daylight Time,

ptforme2002@... writes:

> They said go for it Mom we are behind you all the way. My youngest

> daughter is going to come to some of the group meetings with me.

Hi Barbara!

My sister wasn't at all supportive of my surgery, in fact I didn't discuss it

with her after the first few fights. I didn't tell her I was going to have

the surgery done until the night I left for Delano. My husband was and is so

supportive -- he really sees the miracle it is in my life, and my father was

wonderfully supportive, including some financial help. My biggest support

person, was and is, my friend Holly. She has been with me every step of the way,

including hurried trips to San when I had an incisional infection. I am so

happy for you that your daughters are so supportive.

The point of this is: EVERYONE doesn't have to give you support, just some

of them! I am glad you have started to garner that oh-so-important family to

your side!

Hugs and blessings, Ann

[Guest guest]

Dear CFSFME group,

I am only a new member, and already, I feel like everything I read generates

a question or question I need to ask. If I am being too much of a pesk,

please let me know. I am learning so much by what I am reading, and after years

of being sick and feeling very little hope, I now feel there is a place where

I can come and learn what is or isn't working for other people, as well as

being able to keep up on what is latest in the field. I thank you all very much

~

[Guest guest]

:

The archives of this group are a great source of information and

there's only about 80,000 messages in there! But for a long term

research project, you can't beat it. I'd suggest reading Osler's Web,

too. And in general, everything on Carol's website.

Helen

>

> Dear CFSFME group,

>

> I am only a new member, and already, I feel like everything I read

generates

> a question or question I need to ask. If I am being too much of a

pesk,

> please let me know. I am learning so much by what I am reading, and

after years

> of being sick and feeling very little hope, I now feel there is a

place where

> I can come and learn what is or isn't working for other people, as

well as

> being able to keep up on what is latest in the field. I thank you

all very much

> ~

>

>

>

>

>

>

[Guest guest]

Hi :

WELCOME-ask away; one would think that after being sick for over 20 years I

wouldn't have to ask anything but I do and the abbreviations used here and names

are many that I don't know and have asked or others have asked.

for many years I just backed off from staying in contact with anyone with CFIDS

I because I thought that maybe it would just go away and also I was so burned

out from having several support groups but the info here is wonderful and so

helpful and also to know that your not alone.

the symptoms can change so many times (at least they do with me) that I like to

know what is going on and if this is normal and what ideas there are to help.

hope this helps,

n.

Re: To the Group

Dear CFSFME group,

I am only a new member, and already, I feel like everything I read generates

a question or question I need to ask. If I am being too much of a pesk,

please let me know. I am learning so much by what I am reading, and after

years

of being sick and feeling very little hope, I now feel there is a place where

I can come and learn what is or isn't working for other people, as well as

being able to keep up on what is latest in the field. I thank you all very

much

~

[Guest guest]

Stacie,

There is nothing to forgive, everyone loves you. You've been missed. I hope that you feel better with time. I am sorry about Oreo and will pray for you.

Bonnie

From: LIghtingpaw <lightingpaw@...>Subject: to the group" " < >Date: Tuesday, June 9, 2009, 9:45 AM

dear zapplist i knwo i disappeared fir a while but i had to oreo had gotten very sick and i was dealign with careing for her as well as my medical treatments ect i dotn think i could have been as strogn for the groups as i should have been well last night oreo losst her battle after a weeklong vet stay and medicines ect ! but it you would let me i would liek to intract in the group once more ! right now i dont think i can go it alone ! i've been dealign with heart failure which think goodness is findaly resovleing !!! but still haveing blood issuses and very shockign life yesterday was a very shocking day in more ways then one ! after oreo was passted i was shocked a few times whcih i know was because i was upset but who wouldnt be when a beloved freind passes on ! but i hope you can understand the reasons for stepign away and exept me back n the group and knwo i didnot walk away because of you i walked away because

oreo needed me and it was just to much to deal with seans passing a eyar ago knowing oreos wasnt doign well and with my heart and blood issuses it just was to much ! i do hope you understand and will forgive me

stacie and kira ( the greiveing service dog )

[Guest guest]

dear zapplist

i knwo i disappeared fir a while but i had to oreo had gotten very sick and i

was dealign with careing for her as well as my medical treatments ect i dotn

think i could have been as strogn for the groups as i should have been well

last night oreo losst her battle after a weeklong vet stay and medicines ect

! but it you would let me i would liek to intract in the group once

more ! right now i dont think i can go it alone ! i've been dealign

with heart failure which think goodness is findaly resovleing !!! but still

haveing blood issuses and very shockign life yesterday was a very shocking

day in more ways then one ! after oreo was passted i was shocked a few times

whcih i know was because i was upset but who wouldnt be when a beloved freind

passes on ! but i hope you can understand the reasons for stepign away

and exept me back n the group and knwo i didnot walk away because of you i

walked away because oreo needed me and it was just to much to deal with seans

passing a eyar ago knowing oreos wasnt doign well and with my heart and blood

issuses it just was to much ! i do hope you understand and will forgive me

stacie and kira

( the greiveing service dog )

[Guest guest]

I have approved several new members in the last week or two who mentioned in their application various situations they are trying to deal with around cancer.

I'm not sure why these people haven't posted here...no one can give help or feedback if you don't reach out to the group.

Please new people, introduce yourselves and let us know how we can help. Silence is not the road to recovery...we are here for one another.

Have a great holiday everyone. Be sure to keep your dogs inside. More dogs are lost during the July 4th holiday than any other time of the year..make sure they have their tags on and are microchipped. Keep a recent clear photo of them just in case. Keep them safe.