NOT ALONE

[Guest guest]

,

I didn't mean that you weren't taking care of yourself, what I meant was you

are sick and your body is telling you so, (or that was the interpretation of

the dream I read about) dah, of course you can't. Sorry that you are having

such a difficult time. This really is the pits, I have hope that the tide is

about to turn, especially when we start bombarding every one with emails

telling our stories and then march on CDC, and protest at NIH next month

against Dr. Steere. Hang in there, together we will get something done!!!!!

Sorry you are so frustrated, but I of course understand that. Please let me

know if I can help you in any way, short of officially diagnosing you ,

since I'm not a doctor. But you are definitely NOT A LONE

Re: [Lyme-aid] Flagyl

>From: lisa86@...

>

>Losing control of my life? Absolutely. Not taking care of myself?

Absolutely,

>but not because I don't want to. BECAUSE I CAN'T GET DIAGNOSED!!!!!!

>Interesting interpretation of that dream. It helps to know I'm not the only

>one who has it.

>

>>Send to -Offtopiconelist messages unrelated to lyme, please.

>/archive/lyme-aid

>/archives.cgi/Lyme-Documents

>To unsubscribe, send email to -unsubscribeonelist

>You may substitute " subscribe " , or " digest " or " normal " for

>the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank

both the message and subject header.

>

[Guest guest]

Gosh, Vicki. I wasn't yelling at you!!! A good example of how what we mean

doesn't always translate very well on the internet. I was just expanding on

what you had said. I was yelling at a medical world that is governed by

insurance companies and doesn't listen to its patients. Remember me? I'm the

one who doesn't take anything personally from the list for just this reason.

Sorry if it appeared otherwise. I've got to stop typing in caps, I guess.

[Guest guest]

,

I really didn't think you were yelling, just maybe frustrated, which you are

at the Medical world, as you explained. But I felt bad that maybe I added to

your frustration by telling you what I thought of that dream. I use caps

often to emphasize certain thoughts. But I do agree with you, it is hard to

tell people's true intentions over the internet. Thanks

Vicki

BTW - I like your word choice " gosh " that word seems to get its feelings and

inflection across nicely. I thought only I used that word still, its a good

one.

Re: [Lyme-aid] Not alone

>From: lisa86@...

>

>Gosh, Vicki. I wasn't yelling at you!!! A good example of how what we mean

>doesn't always translate very well on the internet. I was just expanding on

>what you had said. I was yelling at a medical world that is governed by

>insurance companies and doesn't listen to its patients. Remember me? I'm

the

>one who doesn't take anything personally from the list for just this

reason.

>Sorry if it appeared otherwise. I've got to stop typing in caps, I guess.

>

>

>

[Guest guest]

Thanks for understanding, Vicki. You're one of my favorites here. Trying not

to put up any fences.

[Guest guest]

Dear ,

Thank you for writing and tell us about your situation. I am so glad to hear your words about removing the stigma that society puts on HCV." This thing about "stigma" is particularly painful for me these days.

I have been together with the love of my life for 4 years. When we first started dating, I told him about having Hep C before we got "involved." I was afraid he would run away, but instead he told me loved me no matter what and nothing would keep him from wanting to be with me. We have been happy together ever since. But he didn't want his family to know about it.

My younger sister (half), who is only 22, betrayed my confidence and told my fiance's sister, shoethen told the rest of his family. Now his family is very much against him being with me and it has been embarrasing. They act like I'm going to give him this disease, and worst of all they make all kinds of judgements about me, my character and treat me like they don't want me around. It has been very painful not only for me, but for my sweetie who loves me so much and wants his family to understand how happy he is with me.

Anyway, there is really no hope of changing their attitude, but I just thought I'd tell you all about this to get it off my chest. I don't really have anyone else to "cry on their shoulder" (and besides I don't usually even share like this, I don't want to feel sorry for myself).

But when you mentioned about "stigma," I really know what you mean.

I also know what you mean about "compassion," and if this disease has done anything for me, it would be that overall I am a more compassionate person ( I try to stay in that mind-frame now). Compassion is so important to feel, and so important to have for others. We need it from others as much as we need to give it to others.

I have learned how compassion-less some are and I vow not to be that way, and to remember how it feels to NEED another to have compassion for you. I don't ever want to be as "cold" to others, as some have treated me.

It IS GOOD to have a group like this where we can share, and give each other our experience, compassion and caring. I for one, really need this help right now.

Thanks,

[ ] not alone

Hello Brothers and Sisters, its good to know there area group of compassionate caring folks who have thesame battle going on as I do, with knowledge comespower over this virus! I am a non responder gen 1getting ready to go through another trial of 48 weeksfor for a new inhibitor. I am a vet who was infect byair jets before going overseas. One day the monolithicgovernment will have to "fess up to their mistakes. Inthe meantime the Veterans Administration is finallystarting to come to the forefront in the efforts towipe out this virus. I pray for all of you " warriors" that one day this problem wont be a part of ourlives. I think if we all work hard to remove thestigma that society places on HCV and educate thepublic about its lethal dangers maybe one day it wontbe a pandemic......stay strong, educate yourself, michael savage__________________________________________________

[Guest guest]

,,,,,,,,,,,

You are so right. We do have to laugh or we would cry. RA has

changed me also. I catch myself snapping back sometimes. I

had no idea how people suffered till I got this RA. I would

of never believed a body could go through so much and live. I

use to dread it when I woke up in the mornings. I'ts still hard to get up, but I

don't dread it anymore. I was beginning to think I was the only one with RA,

till I found this group.

When I started the humirra, the first morning it worked. I felt a

little human. But it wasn't working after a year. I started

enbrel about a month ago. I have tried a lot already, Methotrexate,

plaqunil, a few others I can't remember the name. NONE of them

works for me. I get scared she will never find the right cocktail

for me sometimes.

Yes indeed, reading these post really shows what we are all

going through. Not just RA (as if thats not enough for one) but

the other illnesses we are burdened with. I just heard about Dennis

of East Texas has prostate cancer. I don't know if he remembers

me, but I remember him. I just felt like it was so unfair for

him to get this. Fair isnt promised to anybody I see.

I had no Idea I would ever come down with so many diseases 20 years

ago. If you would of told me what I was going to get I would of

had a nervous break down worrying about it. Everyone here seems to have such a

plateful. I have read post and went right to prayer

because it was so bad, I hurt so bad, I go to my room and cry. I know I am not

alone, I have a group here that cares.

Other times it's not that I hurt so bad. It's that I hurt for so

long. I know everyone here is hurting. I feel close to all of them,

because they truly know what it is like. I read them to my husband, and he is so

sorry for what we are going through , Some one here said something

about hitting hands with an hammer to show them how we feel.

Thats a great idea, except their hands will get better and we will

go on hurting day after day. I just had a flare up for a few days. I just layed

around in my zone. I can't talk or socialise when I have them. I am glad you are

now starting to talk back at em. HAAAAAA, I was just thinking what you said. You

be sure to let them know

haaaaaaaa. GOd Bless everyone. God bless you . It feels good

to know we are not alone..............................CLORA