Cindy

[Guest guest]

Thanks Sue. When n came home from the hospital she was on

prednisone that we began to taper. At the drop from 10 to 5mg, she

started a dry cough. I brought her in, and she flunked the PFT. She

was put on Qvar, an inhaled steroid, and after two weeks the cough

disappeared. No more issues. Or so I thought. She started to train

for cross country, and she came to us and said that she couldn't

catch her breath on an easy jog. She would get winded immediately

and cough. I brought her back and got a more in depth study done at

the hospital, and she was diagnosed with restrictive lung disease. I

can't say if she has improved, stayed the same, or gotten worse since

the MAS. She was so weak from the MAS at first she couldn't even

walk up the stairs. She had to be carried. She couldn't stand in

the shower for over a month. She didn't have the strength. So we

have had the recuperation mixed in with the lung issues.

Now that I have had time to reflect on things, I wonder if this

doctor is not overreacting. She is doing well. She has energy,

looks good, and has minimal arthritis. But she can't walk fast or

run. How do we know that this isn't part of the healing process? I

am not willing to throw steroids at it. I am afraid that the CT will

show some damage, but as long as it doesn't get worse I would be

happy. Her body underwent a tremendous trauma with the MAS. MAS is

so rare, I don't think the doctors know the damage that it can leave

behind. Thank you, again, for your information. (n, 17,

systemic)

On Sep 4, 2006, at 1:08 PM, mudslid4952002 wrote:

> Hi ,

>

> Does n only get the coughing when she jogs or does it come it

> come at other times? The reason I ask is because my daughter

> Mackenzie was diagnosed in January with Pulmonary Alveolar

> Proteinosis, and one of the main things she had going on was this

> cough, especially in the mornings. Mackenzie will be 9 in November

> and is systemic. She too has had 2 bouts with MAS, fortunately

> caught before it got as bad as n's requiring the ventilator.

> Mackenzie just had a whole lung lavage done in June, but we are not

> real positive it was effective because she really had not gotten

> better. They don't know if the JRA is causing more of the problems

> with her lungs now or what. She is oxygen all the time now, where

> before the lavage, she only needed it at night. The only way they

> were able to come up with the diagnosis of the the alveolar

> proteinosis was through a lung biopsy they did in January. I don't

> post on here very often but I try to catch up on reading. If you

> have any questions feel free to email or maybe we could talk

> sometime if you want.

>

> Sue

>

>

>

[Guest guest]

,

Thanks very much. What are the signs of macrophage activation

syndrome?

> > >

> > > Hi,

> > >

> > > , I am so sorry to hear that is dealing with

this.

> > Please keep in close touch with the doctors so they can advise

you

> > on any precautions needed regarding the meds. I hope the anti-

virals

> > help to shorten the duration and lessen the severity but I

> > definitely wouldn't want to rush the next doses of arthritis meds

> > until all is cleared.

> > >

> > > It wasn't until I was 30 years old that I got chicken pox ...

from

> > my daughter. Josh, in turn, got them from me. It was shortly

after

> > what seemed like a full and complete recovery when Josh presented

> > with the unusual symptoms which we later discovered were related

to

> > the onset of systemic JIA. I strongly believe that his having the

> > chicken pox played a major role in some unsettling of his immune

> > system, which opened the gateway to the arthritis. It's never

been

> > able to be confirmed and I guess it doesn't really matter much

now

> > but I never realized it could be such a serious infection. In

the US

> > alone, before the vaccine, about 100 to 150 people on average

would

> > die from it each year. Healthy people - not those you'd normally

> > consider to be in a high risk category.

> > >

> > > We have to be very careful, especially with our children who

have

> > systemic JA. Please keep us updated on how things go and let

Chris

> > know he's in our thoughts.

> > >

> > > Aloha,

> > > Georgina

> > >

> > >

> > >

> > >

> > >

> > > Re: Re: Chicken pox when you have JRA

> > >

> > >

> > >

> > > ,

> > > WOW, He has CHicken Pox at 15? Dang that sucks. Where did

> > he get it at? Be careful with it atound the eyes, Mouth and

Private

> > areas. Any open sores as well. When had them The Dr said

> > only let her wear White clothes. Mostly I put her in a long

white T

> > Shirt. Sheets were white as well. Calomine lotion on all

blisters.

> > Amazing she had 1 on her eye and that ended up causing a eye

> > infection. As it busted. Since he is older I am amazed that he

has

> > them. Umm Put gloves on his hands.

> > > Just keep him comfy until all is over. Keep in contact with

> > the Dr if anything arises.

> > > Robbin

> > >

> > >

> > >

> > >

> > >

> > > ----------------------------------------------------------

> > -----------

> > > Get a sneak peek of the all-new AOL.com.

> > >

> >

> >

> >

>

[Guest guest]

Hi ,I don't mean to scare you, but knowledge is power.  I think all systemic parents should be aware of MAS.  One of the big triggers is mono, and it was a woman on this list that alerted me to that fact and saved n's life.  The big problem is MAS can have nebulous symptoms.  n had been diagnosed with mono for one day when I got alerted about MAS.  We brought her to the ER and alerted the rheumy that we were coming in.  She was diagnosed with MAS within two hours.  It was mainly thru her labs.  n's symptoms were sore throat, a couple of swollen lymph nodes, lethargy, thirst, headache, and a low fever.  I thought the mono was throwing her into a flare.  It was very hard to distinguish between the flare, the mono, and the MAS.One big lesson I learned was to always let the ped rheumy know about any illness with n.   When we went into the ER, we did bring an article about MAS for the ER doctor to scan.  You have to act very, very fast with MAS.  It can move quickly.  Not to scare you, but n was in intensive care for 9 days on a ventilator.  It was very touch and go.  Between her stubborn nature and lots of prayers, she recovered.  Take care, (n, systemic, 18)On Aug 22, 2007, at 7:20 AM, katherineknbl wrote:,Thanks very much. What are the signs of macrophage activation syndrome? > > >> > > Hi,> > >> > > , I am so sorry to hear that is dealing with this.> > Please keep in close touch with the doctors so they can advise you> > on any precautions needed regarding the meds. I hope the anti-virals> > help to shorten the duration and lessen the severity but I> > definitely wouldn't want to rush the next doses of arthritis meds> > until all is cleared.> > >> > > It wasn't until I was 30 years old that I got chicken pox ... from> > my daughter. Josh, in turn, got them from me. It was shortly after> > what seemed like a full and complete recovery when Josh presented> > with the unusual symptoms which we later discovered were related to> > the onset of systemic JIA. I strongly believe that his having the> > chicken pox played a major role in some unsettling of his immune> > system, which opened the gateway to the arthritis. It's never been> > able to be confirmed and I guess it doesn't really matter much now> > but I never realized it could be such a serious infection. In the US> > alone, before the vaccine, about 100 to 150 people on average would> > die from it each year. Healthy people - not those you'd normally> > consider to be in a high risk category.> > >> > > We have to be very careful, especially with our children who have> > systemic JA. Please keep us updated on how things go and let Chris> > know he's in our thoughts.> > >> > > Aloha,> > > Georgina> > >> > >> > >> > >> > >> > > Re: Re: Chicken pox when you have JRA> > >> > >> > >> > > ,> > > WOW, He has CHicken Pox at 15? Dang that sucks. Where did> > he get it at? Be careful with it atound the eyes, Mouth and Private> > areas. Any open sores as well. When had them The Dr said> > only let her wear White clothes. Mostly I put her in a long white T> > Shirt. Sheets were white as well. Calomine lotion on all blisters.> > Amazing she had 1 on her eye and that ended up causing a eye> > infection. As it busted. Since he is older I am amazed that he has> > them. Umm Put gloves on his hands.> > > Just keep him comfy until all is over. Keep in contact with> > the Dr if anything arises.> > > Robbin> > >> > >> > >> > >> > >> > > ----------------------------------------------------------> > -----------> > > Get a sneak peek of the all-new AOL.com.> > >> >> >> >>

[Guest guest]

,

Does this mean that not even the health care workers in Oregon are getting it

yet. I know that there is a big stink in Texas over the prison inmates getting

it before the general public. I wonder why some states are getting it and not

others. I had my injection two weeks ago. When the clinic got the injection

and flu mist in this week I asked for permission for my girls to get it and

permission was granted. I am not sure why they said yes to Kristie Jo since she

is 18 but they did. We are not a site for this to be given to the general

public. We only received 10 doses of the injectable vaccine and 50 doses of the

flumist. We will be out before the end of next week and we will not even

advertise.

Veri

[Guest guest]

I imagine the health care workers have gotten it. The distribution

of the vaccine is not very organized or logical. Many times it is

thru the health department, and it is being given out at some goofy

place. People are spending the night to get a few doses-like 400.

There are reports that many people are getting the vaccine who are

not high risk. People are panicking and wanting the flu vaccine at

any cost. They don't care if that cost is them getting a flu shot

when they aren't really high risk. If the vaccines were given to

physician offices and ped offices then the physician could make sure

the high risk patients are getting it first. There are 120 families

in our support group. I have been in contact with many who have

already gotten the flu and in some instances it has been dicey.

So to answer your question. Here in Oregon the H1N1 is very hard to

come by. So we wait. (n, 20, systemic)

On Oct 31, 2009, at 7:15 AM, veristroud@... wrote:

>

> ,

>

> Does this mean that not even the health care workers in Oregon are

> getting it yet. I know that there is a big stink in Texas over the

> prison inmates getting it before the general public. I wonder why

> some states are getting it and not others. I had my injection two

> weeks ago. When the clinic got the injection and flu mist in this

> week I asked for permission for my girls to get it and permission

> was granted. I am not sure why they said yes to Kristie Jo since

> she is 18 but they did. We are not a site for this to be given to

> the general public. We only received 10 doses of the injectable

> vaccine and 50 doses of the flumist. We will be out before the end

> of next week and we will not even advertise.

>

> Veri

>

>

[Guest guest]

,

I think all of us mothers of young adults with a chronic disease are

wearing our knees out. When they are younger, we can control their

medications. But when they move out, we lose our control and their

brains aren't quite mature enough yet to understand some of the

ramifications.

I run to deal with the stress of n. I pray when I run. I have

long conversations on my long runs, hoping that n will be given

some wisdom.......

(n, 20, systemic)

On Oct 31, 2009, at 11:51 AM, and Schulz wrote:

> Are you kidding me? He won't even get his flu shot. He applied for

> the military 2 weeks ago and won't listen to a word I tell him.

> That is a whole story in itself. I'm wearing out my knees in prayer

> for him.

> , RA and Rob 20 JAS

>

> Fwd:

> > >

> > > ,

> > >

> > > Does this mean that not even the health care workers in Oregon

> > are

> > > getting it yet. I know that there is a big stink in Texas over

> > the

> > > prison inmates getting it before the general public. I wonder

> > why

> > > some states are getting it and not others. I had my injection

> > two

> > > weeks ago. When the clinic got the injection and flu mist in

> > this

> > > week I asked for permission for my girls to get it and

> > permission

> > > was granted. I am not sure why they said yes to Kristie Jo

> > since

> > > she is 18 but they did. We are not a site for this to be given

> > to

> > > the general public. We only received 10 doses of the

> > injectable

> > > vaccine and 50 doses of the flumist. We will be out before the

> > end

> > > of next week and we will not even advertise.

> > >

> > > Veri

> > >

> > >

[Guest guest]

Cinder,Sweetie you just added a piece to the puzzle. Irritable bowel syndrome is a side effect of Fibromyalgia. You need a doctor that can put all the pieces together. Check out this website that I use to track symptoms: www.patientslikeme.com You'd be surprised once you put it all together how it all fits into place, then you can have your doctor link into your page and he can see it for himself. It's worth a try!Teri From: Cinder <datagrey@...> Sent: Thu, May 6, 2010 3:45:18 PMSubject: Re: [ ]

MARKETPLACE

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.

[Guest guest]

I did end up going to work. I was okay. Felt better as the night went on. Kind of irritable bowel type stuff. Anyway. Doing much better now. I guess I had a headache before too. I am okay now. Gonna go get some sleep though. Hugs Cinder

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From: Christ <ludichrist2000>Subject: [ ] "WebWarriors grp" < >Date: Wednesday, May 5, 2010, 12:32 AM

Hi

Thank you for the diet ideas.

Im sorry your feeling poorly.

Im blasting you with lots of love, healing, and good energy.

Feel better quick, my friend.

love

don in ks

[Guest guest]

Thanks. Cinder

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From: Teri Gottlieb <theresagottlieb@...>Subject: Re: [ ] Date: Thursday, May 6, 2010, 3:57 PM

Cinder,

Sweetie you just added a piece to the puzzle. Irritable bowel syndrome is a side effect of Fibromyalgia. You need a doctor that can put all the pieces together. Check out this website that I use to track symptoms: www.patientslikeme. com You'd be surprised once you put it all together how it all fits into place, then you can have your doctor link into your page and he can see it for himself. It's worth a try!Teri

From: Cinder <datagrey (DOT) com> Sent: Thu, May 6, 2010 3:45:18 PMSubject: Re: [ ]

MARKETPLACE

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Get great advice about dogs and cats. Visit the Dog & Cat Answers Center.

Hobbies & Activities Zone: Find others who share your passions! Explore new interests.

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..

[Guest guest]

TeriI've had IBS most of my adult life, so I sure didn't need any help from the Firbo. A habit of mine ends up causing me all kinds of grief - I can not go and clear my system in a public washroom of any kind. Well, likely you understand what happens then??Just before I went into the hospital, I drank Lactalose a couple of times. Well, I swear there was just nothing left in my body by the time I got over there. Still, they had to give me a suppository a couple of days before I came home.Gloria Cinder,Sweetie you just added a piece to the puzzle. Irritable bowel syndrome is a side effect of Fibromyalgia. You need a doctor that can put all the pieces together. Check out this website that I use to track symptoms: www.patientslikeme. com You'd be surprised once you put it all together how it all fits into place, then you can have your doctor link into your page and he can see it for himself. It's worth a try!Teri From: Cinder <datagrey (DOT) com> Sent: Thu, May 6, 2010 3:45:18 PMSubject: Re: [ ] MARKETPLACE Stay on top of your group activity without

leaving the page you're on - Get the Toolbar now. Get great advice about dogs and cats. Visit the Dog & Cat Answers Center. Hobbies & Activities Zone: Find others who share your passions! Explore new interests. Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use .

[Guest guest]

Hi

There is nothing wrong with getting ready, just in case.

Shoot for the easy time, but prepare for the worst, I say.

Chances are you will suffer little, but one never knows until they are in the thick of things.

It saddens and worrys me that your man is not being more compassionate and understanding.

You have probably explained it all to him and updated him on info, and he is still being hardheaded? -sad-

I also dont like the fact that you may not have a phone.

I should think a phone and HCV TX would go hand in hand...just in case.

You have my number.

I cant get to you, [no walking, no car], but I could try to talk you down.

Will you be able to email?

Im sort of in the same boat.

Im alone, but I can call out - 911 if necessary.

I also have neighbors close by I can yell at if need be.

I am setting myself up now for someone to check on me each day.

I am setting myself up for meals on wheels too, just in case I need food, and cant cook.

Keep preparing for any possibility.

Thats the smart thing to do.

love

don in ks

I had a talk with my husband and asked him if he would quit putting pressure on me by always assuming I would work no matter what. To me I wanted him to let me know it would be okay whether I worked or not. That way if I was too sick to work I would not have to be on some big guilt trip for putting us in such a horrible spot. I told him that would be a sure fire way with the way the Ribaviron works to set me up for feeling suicidal if I ever did. So I asked him not to do that any more if he really wanted to help me in a positive way. He said well if I did not work he would have to get a second job. I said I knew that. I told him the biggest thing would be he would come home at night and could check to see if I were alive and call the doc if I needed help. I told him I would possibly not be able to take myself to dr appts or to the hospital. I also may not be able to get myself to the hospital if needed. He said call 911. Then they would come

and take me into another towns hospital where my doctor isn't. So that would not help me. I asked him when he got home he could check me. He said I would be working 16 plus hours a day. he would not have time. I work that a lot at my job. I can't even get one of those buttons you wear around your neck and press and it calls someone to call someone else to come check on you. We won't have a land line. So I am not sure how I am going to do this even safely at all. I really don't know. I had a friend who was on my facebook she in front of everone always tells me yeah she will help me but never answers her phone or nothing. I offered to pay her and even gas money to come to me. Dunno what I am gonna do. I am trying to remember some of the cnas I know. Try and get a few of them hired under the table. Rick thinks I am foolish to plan this stuff because it then is like I am automatically planning on being sick. I can't imagine waiting till I am puking and

dizzy and sicker than hell to try and figure it out then. hm. Now that might be interesting. I guess I am just really gonna have to set myself up really good for myself ahead and put a small add in our buyers guide for someone a few hours a week. That would work.

I am nervous.

My boss just called and tried to get me to work all night. No way with a morning appt. She left a voice message. I did not answer. Sure can't work with no sleep.

Well gonna get some more email wiped out. Later Cinder

[Guest guest]

I will have email. I will have a cell phone. I will be able to call my neighbor for a ride to the emergency room if I need to. He says when I tell him I am praying for the best planning for the best but knowing the worst could happen and being prepared for worse in case is giving in to it and setteling and then it will make it to where I do have a bad time of it. I tried to tell him by the time I am sick I will not be able to set any thing up for myself then. I sure hope he comes around like soon. I will email you all as soon as I get back tomorrow. I will be okay I will.

Hugs Cinder

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http://www.myspace.com/datagrey

I had a talk with my husband and asked him if he would quit putting pressure on me by always assuming I would work no matter what. To me I wanted him to let me know it would be okay whether I worked or not. That way if I was too sick to work I would not have to be on some big guilt trip for putting us in such a horrible spot. I told him that would be a sure fire way with the way the Ribaviron works to set me up for feeling suicidal if I ever did. So I asked him not to do that any more if he really wanted to help me in a positive way. He said well if I did not work he would have to get a second job. I said I knew that. I told him the biggest thing would be he would come home at night and could check to see if I were alive and call the doc if I needed help. I told him I would possibly not be able to take myself to dr appts or to the hospital. I also may not be able to get myself to the hospital if needed. He said call 911. Then they would come

and take me into another towns hospital where my doctor isn't. So that would not help me. I asked him when he got home he could check me. He said I would be working 16 plus hours a day. he would not have time. I work that a lot at my job. I can't even get one of those buttons you wear around your neck and press and it calls someone to call someone else to come check on you. We won't have a land line. So I am not sure how I am going to do this even safely at all. I really don't know. I had a friend who was on my facebook she in front of everone always tells me yeah she will help me but never answers her phone or nothing. I offered to pay her and even gas money to come to me. Dunno what I am gonna do. I am trying to remember some of the cnas I know. Try and get a few of them hired under the table. Rick thinks I am foolish to plan this stuff because it then is like I am automatically planning on being sick. I can't imagine waiting till I am puking and

dizzy and sicker than hell to try and figure it out then. hm. Now that might be interesting. I guess I am just really gonna have to set myself up really good for myself ahead and put a small add in our buyers guide for someone a few hours a week. That would work.

I am nervous.

My boss just called and tried to get me to work all night. No way with a morning appt. She left a voice message. I did not answer. Sure can't work with no sleep.

Well gonna get some more email wiped out. Later Cinder

[Guest guest]

I have always had trouble with nerves. You read me right. I am smiling and you have just made me feel a whole lot better. Thank you Teri. I mean it. I do feel better. I know I am going to be fine now I just do know it. I appreciate the talk. I needed the pep talk. I may need more of them. That is what ears are for listening. Hearts are for loving friends too. Thanks so much. Going to bed. Love you Cinder

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From: Christ <ludichrist2000>Subject: [ ] "WebWarriors grp" < >Date: Thursday, June 17, 2010, 2:28 PM

Hi

I saw you Facebook message to me about Medical terms.

If you click here, and look in the HCV Links Library - folder - '003A - FAQ' - you will see what I have collected so far.

http://health. dir.groups. / group/HepCWebWar riors/links/ 003A___FAQ_ 001265186877/

If you have something that I havent added yet, please let me know.

You can post the info on forum, and then I can use your post as a link in the library.

It might take you some time to compose the info in a post, but it will be appreciated by everyone as they research in the future.

I can also research the info you give me, and use the results of that as a link.

It will take me some time, but I can do that. LOL :-)

..

[Guest guest]

Cinder,I'm glad you listened and even more glad that what I said sunk in. I still want to bitch-slap your

husband. Something I didn't mention before.. He's probably as scared as you are. I know Bruce was, but he put on this brave front cause one of us had to. But any time that I was sleeping, and til today, he checks me to make sure I am breathing. There was and is no reason for that, he was just that damn scared. He didn't know everything I was going thru, he couldn't. Sometimes it can be just as hard on the spouse just in a different way. This may not hit him til you actually start tx. Hang in there baby girl! And quit panicking! You don't even have the meds in your fridge yet!Hugs,TeriFrom: Cinder <datagrey@...> Sent: Fri, June 18, 2010 12:04:04 AMSubject: Re: [ ]

I have always had trouble with nerves. You read me right. I am smiling and you have just made me feel a whole lot better. Thank you Teri. I mean it. I do feel better. I know I am going to be fine now I just do know it. I appreciate the talk. I needed the pep talk. I may need more of them. That is what ears are for listening. Hearts are for loving friends too. Thanks so much. Going to bed. Love you Cinder

Check out datagrey's photos and profile!

http://community. webshots. com/user/ datagrey

Find me on MySpace and be my friend.

http://www.myspace. com/datagrey

From: Christ <ludichrist2000>Subject: [ ] "WebWarriors grp" < >Date: Thursday, June 17, 2010, 2:28 PM

Hi

I saw you Facebook message to me about Medical terms.

If you click here, and look in the HCV Links Library - folder - '003A - FAQ' - you will see what I have collected so far.

http://health. dir.groups. / group/HepCWebWar riors/links/ 003A___FAQ_ 001265186877/

If you have something that I havent added yet, please let me know.

You can post the info on forum, and then I can use your post as a link in the library.

It might take you some time to compose the info in a post, but it will be appreciated by everyone as they research in the future.

I can also research the info you give me, and use the results of that as a link.

It will take me some time, but I can do that. LOL :-)

..

[Guest guest]

My husband was working in a logging camp the first time I went on treatment. So my mother insisted on coming to stay every weekend, because I did my shots on the Friday night. She never did see me actually do the shot and didn't even know that in the middle of the night, after the first time, I had to get up because my tummy did do somersaults; but, I never actually got sick. Plus, that was the only time I ever felt sick!!! For the most part, I just wanted to be left alone in my bed with all of my animals. That lasted for about 3 months with my mother and then she would just come over on the Saturday to make sure all the pets got out for a pee. I hate having someone standing anywhere near me, if I have to be sick anyway. Instead, I'd do

the shot and then sit in front of the computer My dog back then would cuddle right up with me and both cats were serious babysitters!! Gee, it's sad to think right now that my beautiful loving little Lhaso/Shitsu cross has gone now and even before that was my blue round eyed cat. I'm thinking that I may have to go and bring the survivor of that trio out here with me. He's getting so old now and even though he sheds something awful - he deserves my attention a lot more too. Oh, he's happy enough at home; but he and the other male that moved in don't always see eye to eye. Yet, he dislikes the dog even more. Make sure that you have a TV in the bedroom, a telephone nearby just so you know it's handy and your little dog - then hunker down for a day or two each week. I think you will have to be very strict with yourself and the work that you do. That's an awfully tough job to begin with and you

should cut back to part-time at least. Absolutely no way can you expect to pull off a 15 hr. day!! It'll make you a whole lot more tired and the treatment does enough of that.Please don't even allow your mind to go to such negative places as hiring a babysitter etc. Really, it will not be needed and if you have a telephone, you'll know in plenty of time if there is a problem. I never had a day that I couldn't drive myself to a Dr's appt. Certainly, on this last treatment, it was a 12 hr. round trip to see my Gastro, so I did have to have another driver with me, at least in the very beginning. By half way through, I never even bugged my husband to come and would only take another driver because my mother would worry too much. Fortunately, I drive an older SUV and already had a mattress and sleeping bag in the back. If I'd needed to, I could have pulled off the highway and slept in the back.

Oh, I have tinted windows too, so no one would know I was there. I had to do it once when I'd driven down to (about 3 hrs away) and didn't get my proper sleep. So half way home, I pulled over to a rest stop, got in the back with my dog and one that I was babysitting and we all slept for 4 hours.Anyway, don't let yourself worry so much, it's truly not good for your health. I'll bet you will be able to work part-time at the very least and for heavens sake - do not take on the guilt about not being able to do even that. Truly, tx is the time that it's all about you and the rest of your life!! Always remember that you didn't ask to be struck down this way and there is life saving treatment available and you DESERVE to use it to fight for your liver. Tell Rick quite simply whether he would rather have you down and sick with a treatment plan that has a very good chance of killing the virus OR

wait and wait and wait until you need a new liver and then still have an extremely long wait to see if one ever becomes available??? Besides, during all that waiting - you'll get so sick that you won't be able to work anyway.I love the way that Trudy and her hubby have dealt with it!! So, maybe she doesn't have all that shit all around; but, they can live a stress free life knowing the bills are getting paid....Luv YaGloria

I will have email. I will have a cell phone. I will be able to call my neighbor for a ride to the emergency room if I need to. He says when I tell him I am praying for the best planning for the best but knowing the worst could happen and being prepared for worse in case is giving in to it and setteling and then it will make it to where I do have a bad time of it. I tried to tell him by the time I am sick I will not be able to set any thing up for myself then. I sure hope he comes around like soon. I will email you all as soon as I get back tomorrow. I will be okay I will.

Hugs Cinder

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I had a talk with my husband and asked him if he would quit putting pressure on me by always assuming I would work no matter what. To me I wanted him to let me know it would be okay whether I worked or not. That way if I was too sick to work I would not have to be on some big guilt trip for putting us in such a horrible spot. I told him that would be a sure fire way with the way the Ribaviron works to set me up for feeling suicidal if I ever did. So I asked him not to do that any more if he really wanted to help me in a positive way. He said well if I did not work he would have to get a second job. I said I knew that. I told him the biggest thing would be he would come home at night and could check to see if I were alive and call the doc if I needed help. I told him I would possibly not be able to take myself to dr appts or to the hospital. I also may not be able to get myself to the hospital if needed. He said call 911. Then they would come

and take me into another towns hospital where my doctor isn't. So that would not help me. I asked him when he got home he could check me. He said I would be working 16 plus hours a day. he would not have time. I work that a lot at my job. I can't even get one of those buttons you wear around your neck and press and it calls someone to call someone else to come check on you. We won't have a land line. So I am not sure how I am going to do this even safely at all. I really don't know. I had a friend who was on my facebook she in front of everone always tells me yeah she will help me but never answers her phone or nothing. I offered to pay her and even gas money to come to me. Dunno what I am gonna do. I am trying to remember some of the cnas I know. Try and get a few of them hired under the table. Rick thinks I am foolish to plan this stuff because it then is like I am automatically planning on being sick. I can't imagine waiting till I am puking and

dizzy and sicker than hell to try and figure it out then. hm. Now that might be interesting. I guess I am just really gonna have to set myself up really good for myself ahead and put a small add in our buyers guide for someone a few hours a week. That would work.

I am nervous.

My boss just called and tried to get me to work all night. No way with a morning appt. She left a voice message. I did not answer. Sure can't work with no sleep.

Well gonna get some more email wiped out. Later Cinder

[Guest guest]

, just a thought...can you get a local church to commit to help with minimal home phone payment for duration of tx? If you call them (go see them) with proof from doc , explain that you may not be able to work etc...usually they will help. May well even have a church member or two who could visit you once a week. ( Teri, stay quiet.... not sending her to your church people !) when my first husband was terminal with cancer, we had hospice. But doc wouldn't let him come home( we lived in rural area) unless we had a home phone. I couldn't keep up with all the bills. A church in town that I didn't even know paid a 300.00 phone bill to keep my phone on so he could come home till the end. Sure it was only a one time deal but that was huge bill. Maybe a local church would sign on for regular small telephone bill. Worth a try...they may just be able to help with much of your concerns. I actually had the assistance of two

different churches, two different denominations. Wishing I were closer to you Trudy in OK is Goodhttp://facebook.com/people/andTrudy-Kinsey/1340460877 " "A well- behaved woman never made history"...Mae Westhttp://oktravels.wordpress.com http://allrecipes.com/cook/TrudyK/profile.aspx On Jun 17, 2010, at 7:17 PM, Christ <ludichrist2000@...> wrote:

Hi

There is nothing wrong with getting ready, just in case.

Shoot for the easy time, but prepare for the worst, I say.

Chances are you will suffer little, but one never knows until they are in the thick of things.

It saddens and worrys me that your man is not being more compassionate and understanding.

You have probably explained it all to him and updated him on info, and he is still being hardheaded? -sad-

I also dont like the fact that you may not have a phone.

I should think a phone and HCV TX would go hand in hand...just in case.

You have my number.

I cant get to you, [no walking, no car], but I could try to talk you down.

Will you be able to email?

Im sort of in the same boat.

Im alone, but I can call out - 911 if necessary.

I also have neighbors close by I can yell at if need be.

I am setting myself up now for someone to check on me each day.

I am setting myself up for meals on wheels too, just in case I need food, and cant cook.

Keep preparing for any possibility.

Thats the smart thing to do.

love

don in ks

I had a talk with my husband and asked him if he would quit putting pressure on me by always assuming I would work no matter what. To me I wanted him to let me know it would be okay whether I worked or not. That way if I was too sick to work I would not have to be on some big guilt trip for putting us in such a horrible spot. I told him that would be a sure fire way with the way the Ribaviron works to set me up for feeling suicidal if I ever did. So I asked him not to do that any more if he really wanted to help me in a positive way. He said well if I did not work he would have to get a second job. I said I knew that. I told him the biggest thing would be he would come home at night and could check to see if I were alive and call the doc if I needed help. I told him I would possibly not be able to take myself to dr appts or to the hospital. I also may not be able to get myself to the hospital if needed. He said call 911. Then they would come

and take me into another towns hospital where my doctor isn't. So that would not help me. I asked him when he got home he could check me. He said I would be working 16 plus hours a day. he would not have time. I work that a lot at my job. I can't even get one of those buttons you wear around your neck and press and it calls someone to call someone else to come check on you. We won't have a land line. So I am not sure how I am going to do this even safely at all. I really don't know. I had a friend who was on my facebook she in front of everone always tells me yeah she will help me but never answers her phone or nothing. I offered to pay her and even gas money to come to me. Dunno what I am gonna do. I am trying to remember some of the cnas I know. Try and get a few of them hired under the table. Rick thinks I am foolish to plan this stuff because it then is like I am automatically planning on being sick. I can't imagine waiting till I am puking and

dizzy and sicker than hell to try and figure it out then. hm. Now that might be interesting. I guess I am just really gonna have to set myself up really good for myself ahead and put a small add in our buyers guide for someone a few hours a week. That would work.

I am nervous.

My boss just called and tried to get me to work all night. No way with a morning appt. She left a voice message. I did not answer. Sure can't work with no sleep.

Well gonna get some more email wiped out. Later Cinder

[Guest guest]

Make absolutely sure that the cell will work in the bomb shelter!!!Gloria

Thank you but I do indeed have a phone. Sorry for the confusion. I am fine really. Thanks though. I sure do love you all. Cinder

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I had a talk with my husband and asked him if he would quit putting pressure on me by always assuming I would work no matter what. To me I wanted him to let me know it would be okay whether I worked or not. That way if I was too sick to work I would not have to be on some big guilt trip for putting us in such a horrible spot. I told him that would be a sure fire way with the way the Ribaviron works to set me up for feeling suicidal if I ever did. So I asked him not to do that any more if he really wanted to help me in a positive way. He said well if I did not work he would have to get a second job. I said I knew that. I told him the biggest thing would be he would come home at night and could check to see if I were alive and call the doc if I needed help. I told him I would possibly not be able to take myself to dr appts or to the hospital. I also may not be able to get myself to the hospital if needed. He said call 911. Then they would come

and take me into another towns hospital where my doctor isn't. So that would not help me. I asked him when he got home he could check me. He said I would be working 16 plus hours a day. he would not have time. I work that a lot at my job. I can't even get one of those buttons you wear around your neck and press and it calls someone to call someone else to come check on you. We won't have a land line. So I am not sure how I am going to do this even safely at all. I really don't know. I had a friend who was on my facebook she in front of everone always tells me yeah she will help me but never answers her phone or nothing. I offered to pay her and even gas money to come to me. Dunno what I am gonna do. I am trying to remember some of the cnas I know. Try and get a few of them hired under the table. Rick thinks I am foolish to plan this stuff because it then is like I am automatically planning on being sick. I can't imagine waiting till I am puking and

dizzy and sicker than hell to try and figure it out then. hm. Now that might be interesting. I guess I am just really gonna have to set myself up really good for myself ahead and put a small add in our buyers guide for someone a few hours a week. That would work.

I am nervous.

My boss just called and tried to get me to work all night. No way with a morning appt. She left a voice message. I did not answer. Sure can't work with no sleep.

Well gonna get some more email wiped out. Later Cinder

[Guest guest]

This is pretty much what I have come up with. I can't get out of working the 12 hour shift. I can take a night nap though at work. I kind of already do that when I can. I don't really have all that far to drive. From where I am at right now it is 12 miles. From the other place around 35 miles. So not too bad. I am gonna be fine I decided last night.

My husband was talking about cutting off most of the insurance on the cars and some of the phone services and all the satallite dish services. No tv. And the internet. I told him the internet is my only damn support system. I told him that would probably end up with me unable to cope with no one to talk me down since I tend to be such a worrier about everything. So he will try to keep at least the internet. I may cut back on a lot of my groups and keep this one at least. That I can deal with. I can read Dont' need tv. I am a book worm.

Well better go. Got a bbq birthday party fathers day for a friend I have to go to. Got to pick Rick up and go. Later Love you Cinder

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From: Gloria <gadamscan@...>Subject: Re: [ ] Date: Friday, June 18, 2010, 12:27 AM

My husband was working in a logging camp the first time I went on treatment. So my mother insisted on coming to stay every weekend, because I did my shots on the Friday night. She never did see me actually do the shot and didn't even know that in the middle of the night, after the first time, I had to get up because my tummy did do somersaults; but, I never actually got sick. Plus, that was the only time I ever felt sick!!! For the most part, I just wanted to be left alone in my bed with all of my animals. That lasted for about 3 months with my mother and then she would just come over on the Saturday to make sure all the pets got out for a pee. I hate having someone standing anywhere near me, if I have to be sick anyway. Instead, I'd do the shot and then sit in front of the computer My dog back then would cuddle right up with me and both cats were serious babysitters! !

Gee, it's sad to think right now that my beautiful loving little Lhaso/Shitsu cross has gone now and even before that was my blue round eyed cat. I'm thinking that I may have to go and bring the survivor of that trio out here with me. He's getting so old now and even though he sheds something awful - he deserves my attention a lot more too. Oh, he's happy enough at home; but he and the other male that moved in don't always see eye to eye. Yet, he dislikes the dog even more. Make sure that you have a TV in the bedroom, a telephone nearby just so you know it's handy and your little dog - then hunker down for a day or two each week. I think you will have to be very strict with yourself and the work that you do. That's an awfully tough job to begin with and you should cut back to part-time at least. Absolutely no way can you expect to pull off a 15 hr. day!! It'll make you a whole lot more tired

and the treatment does enough of that.Please don't even allow your mind to go to such negative places as hiring a babysitter etc. Really, it will not be needed and if you have a telephone, you'll know in plenty of time if there is a problem. I never had a day that I couldn't drive myself to a Dr's appt. Certainly, on this last treatment, it was a 12 hr. round trip to see my Gastro, so I did have to have another driver with me, at least in the very beginning. By half way through, I never even bugged my husband to come and would only take another driver because my mother would worry too much. Fortunately, I drive an older SUV and already had a mattress and sleeping bag in the back. If I'd needed to, I could have pulled off the highway and slept in the back. Oh, I have tinted windows too, so no one would know I was there. I had to do it once when I'd driven down to (about 3 hrs away) and

didn't get my proper sleep. So half way home, I pulled over to a rest stop, got in the back with my dog and one that I was babysitting and we all slept for 4 hours.Anyway, don't let yourself worry so much, it's truly not good for your health. I'll bet you will be able to work part-time at the very least and for heavens sake - do not take on the guilt about not being able to do even that. Truly, tx is the time that it's all about you and the rest of your life!! Always remember that you didn't ask to be struck down this way and there is life saving treatment available and you DESERVE to use it to fight for your liver. Tell Rick quite simply whether he would rather have you down and sick with a treatment plan that has a very good chance of killing the virus OR wait and wait and wait until you need a new liver and then still have an extremely long wait to see if one ever becomes available??? Besides,

during all that waiting - you'll get so sick that you won't be able to work anyway.I love the way that Trudy and her hubby have dealt with it!! So, maybe she doesn't have all that shit all around; but, they can live a stress free life knowing the bills are getting paid....Luv YaGloria

[Guest guest]

Cinder, don't know if you already do this , but I use Kobo books... It's books online( computer or smart phone). It's waaay cheaper than real books. And believe it or not, it's just as easyto read on phone as in book. The print is same size as printed and you just turn the page...current best seller" Shit My Dad Says" ( also new tv series from that book) anyway it cost $8.00 and downloaded in 5 mins with my poor connection. Just saying, good way to be a bookworm cheaper if you don't have library near. And I never have to remember my book when I go somewhere cause I Alwsys have my phone!http://facebook.com/people/andTrudy-Kinsey/1340460877 " "A well- behaved woman never made history"...Mae Westhttp://oktravels.wordpress.com http://allrecipes.com/cook/TrudyK/profile.aspx On Jun 20, 2010, at 11:03 AM, Cinder <datagrey@...> wrote:

This is pretty much what I have come up with. I can't get out of working the 12 hour shift. I can take a night nap though at work. I kind of already do that when I can. I don't really have all that far to drive. From where I am at right now it is 12 miles. From the other place around 35 miles. So not too bad. I am gonna be fine I decided last night.

My husband was talking about cutting off most of the insurance on the cars and some of the phone services and all the satallite dish services. No tv. And the internet. I told him the internet is my only damn support system. I told him that would probably end up with me unable to cope with no one to talk me down since I tend to be such a worrier about everything. So he will try to keep at least the internet. I may cut back on a lot of my groups and keep this one at least. That I can deal with. I can read Dont' need tv. I am a book worm.

Well better go. Got a bbq birthday party fathers day for a friend I have to go to. Got to pick Rick up and go. Later Love you Cinder

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From: Gloria <gadamscan (DOT) ca>Subject: Re: [ ] Date: Friday, June 18, 2010, 12:27 AM

My husband was working in a logging camp the first time I went on treatment. So my mother insisted on coming to stay every weekend, because I did my shots on the Friday night. She never did see me actually do the shot and didn't even know that in the middle of the night, after the first time, I had to get up because my tummy did do somersaults; but, I never actually got sick. Plus, that was the only time I ever felt sick!!! For the most part, I just wanted to be left alone in my bed with all of my animals. That lasted for about 3 months with my mother and then she would just come over on the Saturday to make sure all the pets got out for a pee. I hate having someone standing anywhere near me, if I have to be sick anyway. Instead, I'd do the shot and then sit in front of the computer My dog back then would cuddle right up with me and both cats were serious babysitters! !

Gee, it's sad to think right now that my beautiful loving little Lhaso/Shitsu cross has gone now and even before that was my blue round eyed cat. I'm thinking that I may have to go and bring the survivor of that trio out here with me. He's getting so old now and even though he sheds something awful - he deserves my attention a lot more too. Oh, he's happy enough at home; but he and the other male that moved in don't always see eye to eye. Yet, he dislikes the dog even more. Make sure that you have a TV in the bedroom, a telephone nearby just so you know it's handy and your little dog - then hunker down for a day or two each week. I think you will have to be very strict with yourself and the work that you do. That's an awfully tough job to begin with and you should cut back to part-time at least. Absolutely no way can you expect to pull off a 15 hr. day!! It'll make you a whole lot more tired

and the treatment does enough of that.Please don't even allow your mind to go to such negative places as hiring a babysitter etc. Really, it will not be needed and if you have a telephone, you'll know in plenty of time if there is a problem. I never had a day that I couldn't drive myself to a Dr's appt. Certainly, on this last treatment, it was a 12 hr. round trip to see my Gastro, so I did have to have another driver with me, at least in the very beginning. By half way through, I never even bugged my husband to come and would only take another driver because my mother would worry too much. Fortunately, I drive an older SUV and already had a mattress and sleeping bag in the back. If I'd needed to, I could have pulled off the highway and slept in the back. Oh, I have tinted windows too, so no one would know I was there. I had to do it once when I'd driven down to (about 3 hrs away) and

didn't get my proper sleep. So half way home, I pulled over to a rest stop, got in the back with my dog and one that I was babysitting and we all slept for 4 hours.Anyway, don't let yourself worry so much, it's truly not good for your health. I'll bet you will be able to work part-time at the very least and for heavens sake - do not take on the guilt about not being able to do even that. Truly, tx is the time that it's all about you and the rest of your life!! Always remember that you didn't ask to be struck down this way and there is life saving treatment available and you DESERVE to use it to fight for your liver. Tell Rick quite simply whether he would rather have you down and sick with a treatment plan that has a very good chance of killing the virus OR wait and wait and wait until you need a new liver and then still have an extremely long wait to see if one ever becomes available??? Besides,

during all that waiting - you'll get so sick that you won't be able to work anyway.I love the way that Trudy and her hubby have dealt with it!! So, maybe she doesn't have all that shit all around; but, they can live a stress free life knowing the bills are getting paid....Luv YaGloria

[Guest guest]

I have been downloading everything to read on my little notebook laptop. It is small. I carry it everywhere. My hubby would not let me download anything on phone. But the notebook is great. It is small. i love it. Cinder

Thanks so much. I did need a new site to download books from though. I read a lot at work. Actually. To keep one of the men quiet who is a habitual yeller. I read to him. So I read a lot of what I am reading for myself and he is quiet. He just wants to hear a voice. We have also been reading an old country western about some wolves and buffalo too for him also. So that is what I am doing at 3 am in the morning. Cinder

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From: Gloria <gadamscan (DOT) ca>Subject: Re: [ ] Date: Friday, June 18, 2010, 12:27 AM

My husband was working in a logging camp the first time I went on treatment. So my mother insisted on coming to stay every weekend, because I did my shots on the Friday night. She never did see me actually do the shot and didn't even know that in the middle of the night, after the first time, I had to get up because my tummy did do somersaults; but, I never actually got sick. Plus, that was the only time I ever felt sick!!! For the most part, I just wanted to be left alone in my bed with all of my animals. That lasted for about 3 months with my mother and then she would just come over on the Saturday to make sure all the pets got out for a pee. I hate having someone standing anywhere near me, if I have to be sick anyway. Instead, I'd do the shot and then sit in front of the computer My dog back then would cuddle right up with me and both cats were serious babysitters! !

Gee, it's sad to think right now that my beautiful loving little Lhaso/Shitsu cross has gone now and even before that was my blue round eyed cat. I'm thinking that I may have to go and bring the survivor of that trio out here with me. He's getting so old now and even though he sheds something awful - he deserves my attention a lot more too. Oh, he's happy enough at home; but he and the other male that moved in don't always see eye to eye. Yet, he dislikes the dog even more. Make sure that you have a TV in the bedroom, a telephone nearby just so you know it's handy and your little dog - then hunker down for a day or two each week. I think you will have to be very strict with yourself and the work that you do. That's an awfully tough job to begin with and you should cut back to part-time at least. Absolutely no way can you expect to pull off a 15 hr. day!! It'll make you a whole lot more tired

and the treatment does enough of that.Please don't even allow your mind to go to such negative places as hiring a babysitter etc. Really, it will not be needed and if you have a telephone, you'll know in plenty of time if there is a problem. I never had a day that I couldn't drive myself to a Dr's appt. Certainly, on this last treatment, it was a 12 hr. round trip to see my Gastro, so I did have to have another driver with me, at least in the very beginning. By half way through, I never even bugged my husband to come and would only take another driver because my mother would worry too much. Fortunately, I drive an older SUV and already had a mattress and sleeping bag in the back. If I'd needed to, I could have pulled off the highway and slept in the back. Oh, I have tinted windows too, so no one would know I was there. I had to do it once when I'd driven down to (about 3 hrs away) and

didn't get my proper sleep. So half way home, I pulled over to a rest stop, got in the back with my dog and one that I was babysitting and we all slept for 4 hours.Anyway, don't let yourself worry so much, it's truly not good for your health. I'll bet you will be able to work part-time at the very least and for heavens sake - do not take on the guilt about not being able to do even that. Truly, tx is the time that it's all about you and the rest of your life!! Always remember that you didn't ask to be struck down this way and there is life saving treatment available and you DESERVE to use it to fight for your liver. Tell Rick quite simply whether he would rather have you down and sick with a treatment plan that has a very good chance of killing the virus OR wait and wait and wait until you need a new liver and then still have an extremely long wait to see if one ever becomes available??? Besides,

during all that waiting - you'll get so sick that you won't be able to work anyway.I love the way that Trudy and her hubby have dealt with it!! So, maybe she doesn't have all that shit all around; but, they can live a stress free life knowing the bills are getting paid....Luv YaGloria

[Guest guest]

I swear that the TV was my saviour on the weekends!!! The times that I just couldn't get up, at least there was the noise of the TV even if I did go back to sleep.Even this past Sunday is a great example. For whatever reason, I think my Fibro really started to kick up a fuss and I literally could not get up all day. But, at least the TV was on A & E and I got to see partial repeats of the crime shows. Only partial, because I would fall back to sleep.

This is pretty much what I have come up with. I can't get out of working the 12 hour shift. I can take a night nap though at work. I kind of already do that when I can. I don't really have all that far to drive. From where I am at right now it is 12 miles. From the other place around 35 miles. So not too bad. I am gonna be fine I decided last night.

My husband was talking about cutting off most of the insurance on the cars and some of the phone services and all the satallite dish services. No tv. And the internet. I told him the internet is my only damn support system. I told him that would probably end up with me unable to cope with no one to talk me down since I tend to be such a worrier about everything. So he will try to keep at least the internet. I may cut back on a lot of my groups and keep this one at least. That I can deal with. I can read Dont' need tv. I am a book worm.

Well better go. Got a bbq birthday party fathers day for a friend I have to go to. Got to pick Rick up and go. Later Love you Cinder

Check out datagrey's photos and profile!

http://community. webshots. com/user/ datagrey

Find me on MySpace and be my friend.

http://www.myspace. com/datagrey

From: Gloria <gadamscan (DOT) ca>Subject: Re: [ ] Date: Friday, June 18, 2010, 12:27 AM

My husband was working in a logging camp the first time I went on treatment. So my mother insisted on coming to stay every weekend, because I did my shots on the Friday night. She never did see me actually do the shot and didn't even know that in the middle of the night, after the first time, I had to get up because my tummy did do somersaults; but, I never actually got sick. Plus, that was the only time I ever felt sick!!! For the most part, I just wanted to be left alone in my bed with all of my animals. That lasted for about 3 months with my mother and then she would just come over on the Saturday to make sure all the pets got out for a pee. I hate having someone standing anywhere near me, if I have to be sick anyway. Instead, I'd do the shot and then sit in front of the computer My dog back then would cuddle right up with me and both cats were serious babysitters! !

Gee, it's sad to think right now that my beautiful loving little Lhaso/Shitsu cross has gone now and even before that was my blue round eyed cat. I'm thinking that I may have to go and bring the survivor of that trio out here with me. He's getting so old now and even though he sheds something awful - he deserves my attention a lot more too. Oh, he's happy enough at home; but he and the other male that moved in don't always see eye to eye. Yet, he dislikes the dog even more. Make sure that you have a TV in the bedroom, a telephone nearby just so you know it's handy and your little dog - then hunker down for a day or two each week. I think you will have to be very strict with yourself and the work that you do. That's an awfully tough job to begin with and you should cut back to part-time at least. Absolutely no way can you expect to pull off a 15 hr. day!! It'll make you a whole lot more tired

and the treatment does enough of that.Please don't even allow your mind to go to such negative places as hiring a babysitter etc. Really, it will not be needed and if you have a telephone, you'll know in plenty of time if there is a problem. I never had a day that I couldn't drive myself to a Dr's appt. Certainly, on this last treatment, it was a 12 hr. round trip to see my Gastro, so I did have to have another driver with me, at least in the very beginning. By half way through, I never even bugged my husband to come and would only take another driver because my mother would worry too much. Fortunately, I drive an older SUV and already had a mattress and sleeping bag in the back. If I'd needed to, I could have pulled off the highway and slept in the back. Oh, I have tinted windows too, so no one would know I was there. I had to do it once when I'd driven down to (about 3 hrs away) and

didn't get my proper sleep. So half way home, I pulled over to a rest stop, got in the back with my dog and one that I was babysitting and we all slept for 4 hours.Anyway, don't let yourself worry so much, it's truly not good for your health. I'll bet you will be able to work part-time at the very least and for heavens sake - do not take on the guilt about not being able to do even that. Truly, tx is the time that it's all about you and the rest of your life!! Always remember that you didn't ask to be struck down this way and there is life saving treatment available and you DESERVE to use it to fight for your liver. Tell Rick quite simply whether he would rather have you down and sick with a treatment plan that has a very good chance of killing the virus OR wait and wait and wait until you need a new liver and then still have an extremely long wait to see if one ever becomes available??? Besides,

during all that waiting - you'll get so sick that you won't be able to work anyway.I love the way that Trudy and her hubby have dealt with it!! So, maybe she doesn't have all that shit all around; but, they can live a stress free life knowing the bills are getting paid....Luv YaGloria

[Guest guest]

Yep and the Hep C can just getti on up and getti on out. Love Cinder

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From: Teri Gottlieb <theresagottlieb@...>Subject: Re: [ ] Date: Saturday, June 19, 2010, 12:47 PM

Cinder honey, I am so proud of you... you have come such a long way in just a few days. Good job there cowgirl. Now that I know you're from that country called Texas, (I don't consider it a state, it's a country of it's own... lived there for way too long) anyway, now I can tell you to cowboy up!

Hugs,

Teri

From: Cinder <datagrey (DOT) com> Sent: Sat, June 19, 2010 12:03:21 PMSubject: Re: [ ]

It does we have antena we rigged up. But that is why we fixed the trailer up out side up above so we could live up there till it was ready down below which will be quite awhile. So I will be up above in the trailer in my nice room real close to my nice bathroom in my nice bed with my human dog kicking the dragon ass or in my other country home 30 miles from there near my job. I may stay there. It is already set up and done. Not fancy. Old but comfortable. I got my bed with my tv on one side my computer on the other and my laptop for when I don't feel like getting out of bed. I got my portable dvd player in case I want to watch movies. I got a cd player jam box in case I want to listen to music. I got a ton of books downloaded on both computers. I have three freezers stocked. I don't have to shop for like ever. My husband will do any in between shopping. I have my always loved in door crushed ice for ice water in my refrigerator. I may just stay

here. Don't know yet. I will see. My husband won't be home much either place anyway. That place is out in the boonies. My neighbor is a volunteer firefighter. If I called him he would come help me get somewhere. He thinks I have cancer. Or if I stayed here my neighbor across the field that I walk with would help me. So would the corner neighbors. His wife is a cancer survivor. They would definitly help me. So I am set up. I won't be doing tx down in the missle base. Maybe out up above near it but not in it. I promise. The coolness of it down below feels good when you are hot but maybe not so great if you have a fever and are chilling. We don't have heat down there yet. Lots of work to be done down there yet.

love and hugs Cinder

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-

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Is today your birthday? Cause I will sing to you!Sent from my Verizon Wireless BlackBerryFrom: Cinder <datagrey@...>Sender: Date: Fri, 25 Jun 2010 03:51:27 -0700 (PDT)< >Reply Subject: Re: [ ] Yep and the Hep C can just getti on up and getti on out. Love CinderCheck out datagrey's photos and profile! http://community.webshots.com/user/datagreyFind me on MySpace and be my friend. http://www.myspace.com/datagrey --- On Sat, 6/19/10, Teri Gottlieb <theresagottlieb > wrote:From: Teri Gottlieb <theresagottlieb >Subject: Re: [ ] Date: Saturday, June 19, 2010, 12:47 PM Cinder honey, I am so proud of you... you have come such a long way in just a few days. Good job there cowgirl. Now that I know you're from that country called Texas, (I don't consider it a state, it's a country of it's own... lived there for way too long) anyway, now I can tell you to cowboy up!Hugs,Teri From: Cinder <datagrey (DOT) com> Sent: Sat, June 19, 2010 12:03:21 PMSubject: Re: [ ] It does we have antena we rigged up. But that is why we fixed the trailer up out side up above so we could live up there till it was ready down below which will be quite awhile. So I will be up above in the trailer in my nice room real close to my nice bathroom in my nice bed with my human dog kicking the dragon ass or in my other country home 30 miles from there near my job. I may stay there. It is already set up and done. Not fancy. Old but comfortable. I got my bed with my tv on one side my computer on the other and my laptop for when I don't feel like getting out of bed. I got my portable dvd player in case I want to watch movies. I got a cd player jam box in case I want to listen to music. I got a ton of books downloaded on both computers. I have three freezers stocked. I don't have to shop for like ever. My husband will do any in between shopping. I have my always loved in door crushed ice for ice water in my refrigerator. I may just stayhere. Don't know yet. I will see. My husband won't be home much either place anyway. That place is out in the boonies. My neighbor is a volunteer firefighter. If I called him he would come help me get somewhere. He thinks I have cancer. Or if I stayed here my neighbor across the field that I walk with would help me. So would the corner neighbors. His wife is a cancer survivor. They would definitly help me. So I am set up. I won't be doing tx down in the missle base. Maybe out up above near it but not in it. I promise. The coolness of it down below feels good when you are hot but maybe not so great if you have a fever and are chilling. We don't have heat down there yet. Lots of work to be done down there yet. love and hugs CinderCheck out datagrey's photos and profile! http://community. webshots. com/user/ datagreyFind me on MySpace and be my friend. http://www.myspace. com/datagrey -

[Guest guest]

Thank you ! I didn't see any blisters but my eyes aren't great. That

makes me feel better, I really don't want to keep searching for diseases. lol

Amy - Avery 17 systemic

________________________________

From: Price <bc.price@...>

" " < >

Sent: Sun, October 10, 2010 11:42:57 PM

Subject: Re: nn, Amy updates

n gets peeling hands and feet. She gets little blisters all over her feet

and hands at times and then the skin peels off. ( n,21, systemic)

Sent from my iPhone

On Oct 10, 2010, at 6:13 PM, Colleen <bookissmom@...> wrote:

> Hi-

>

> Just wanted to thank you both for the updates! nn, I'm glad is

doing

>well on the kineret. I know lots of kids that say that over time, the stinging

>becomes less and less... I sure hope that is the case for her! Wouldn't it be

>wonderful if this is the answer!!!!

>

> Amy - I'm so sorry to hear of your continued struggle. I meant to post the

>other day... reading your story, I am reminded again that dealing with

diagnosis

>is parallel to dealing with grief upon a loved one's death. That is, you sort

>of go through stages of grief - denial, anger, bargaining, depression,

>acceptance. And it's not a straight line - but a zig-zag back and forth

through

>the stages... feeling OK one day and back to sorrow or anger the next. You

>mentioned once wanting to know some other onset stories... but I was afraid to

>post at the time - because I didn't want to scare you. I don't think I could

>scare you now, because you and your family have already been through heck and

>back

> I write a blog on the AF page - and here was my entry about thsoe early days:

> http://community.arthritis.org/jiamoms/blog/2010/02/09/those-dark-early-days

>

> I truly hope the rilonacept works... especially since the kineret had such an

>immediate response. The peeling is worrisome - you're right, it sounds so much

>like Kawasaki....

> Caitlin has often had a stange, itchy rash on the palm of her hand. Our

>rheumy has always attributed it to either allergies, or systemic rash - even

>when she was having no rash anywhere else for years. We're never really sure

on

>that one....

>

> I hope tomorrow is a good day for Avery! I think you said the med came

through

>the hospital pharmacy? Maybe they'll work out a payment plan for you. My

>hospital is always great about letting me make payments. I remember when we

got

>the first bill after her original hospitalization.... when I called to make

>payment arrangements, they said " If you have half of the total now, we'll take

>it as payment in full " .... and I was blown away. Since then, I always just

call

>and roll the bills into one and make monthly payments.

>

> Our annual out of pocket max Caitlin is $3K....and we'll be hitting that

before

>her surgery for sure. Bright side, right?

>

> Best hopes to you-

> Colleen - mom to Caitlin, 12, systemic

>

>

>

[Guest guest]

When I did treatment the first time, my husband worked away from home a lot!!! Unfortunately, on the 2nd round, he was right there. In my case, that turned out to be the worst thing that could have happened. Do I wish that I had never done treatment and still had my husband?? NOPE not for a second. He truly was a jackass to me, period. In fact, he's still a jackass to me!!! Dying without a

will. Geez!!! I'll tell you, if I could magically wish him back from the ashes, I'd use a baseball bat to hit him up the side of the head.When he was away during the first treatment, my mother would come over every Friday night that I did my shot. You know, never once did she actually see me do the shot; but, she felt better that I was not alone. However, I actually had no problem with being alone on the Sat. or Sun. That way, I could just stay in bed and was not concerned about anyone.Gloria

The best way to get through this is to use your head. Know why it is you feel bad. You can defuse a lot of the anger just by knowing why you feel that way. I had horrible PMS all the way up to menopause. My husband had a lot to put up with. I finally got to where I told him that I knowticed when I got up and was mad sometimes and haven't even talked to anyone yet or done anything and already felt like blowing up. So I would recognise it and tell my husband wrong side of bed. He knew what it meant and stayed out of my way. I tried harder to avoid stuff on those days to not go off on anyone. I was a little maniac sometimes.

Anyway I started doing nice things for me on those days to help myself. I took a nice bath. I got a back rub from Rick. I slept in and watched tv. I ate ice cream. I looked at meditations on the internet. I did stuff to make me relax and decided the other stuff would have to wait for a better day. You may have to do some of this. Don't let it get you all wound up. They aren't worth it hon. You need to help yourself now. do some constructive stuff for you now. You are not done getting over tx right now. You are expecting to be over it way too fast. Allow yourself the time to get better for now if you can. I know you want to sink all that stupid clinics ship and yes they deserve it and worse but right now it may not be too constructive in your healing. I am worried about you.

I am sitting over here with 105 temp right now. Don't make me come over there and make you take care of you. Me and Teri and Don will all come over and feed you grapes and take care of you. They had a write up in Dons and my City's newspaper saying they would have the two new drugs out sometime this summer. So may be starting this summer. After being sick today with no help and 105 fever and vomiting and chills I had a harder than hell time getting up and putting on three pairs of jogging pants and three long sleeve jogging shirts and socks and a coat so I could take the dogs out. Then back in to take some thera flu and back to bed. Now got a bad headache. I was barely able to get the dogs out today. I asked a friend today if I paid her would she come spend the night with me on shot nights. I am still waiting for an answer. I hope she says yes. Rick is going to get a second job so he won't be able to help me probably at all. Don't know what I

am going to do. He still says he does not want me to tell his step mom. She knows I got to find a way to tell him I told her. I can't go stay with her on shot nights because of my dogs and parrot. My house is not up to her niceness. She will be more helpful for grocery shopping and rides to appts. I got the lady across the fields for that too. I may ask Ricks step mom to go with me for the first shot. I don't think I will have trouble with it. I have given shots to my dogs. I gave shots to my horses too. so we will see.

Good night. Chilling again.

Anyway ny. Love you and no matter what always take time to love yourself and when you have a bad day start looking for the good in it too. It is there you just haven't looked far enough yet. Love you