Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 Should be able to do that, Vicki. I am not sure how either but I am sure you will figure it out!!! Fill us in when you do!! Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 Should be able to do that, Vicki. I am not sure how either but I am sure you will figure it out!!! Fill us in when you do!! Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 Should be able to do that, Vicki. I am not sure how either but I am sure you will figure it out!!! Fill us in when you do!! Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2002 Report Share Posted July 14, 2002 Sorry, I saw your post to dawn after I wrote mine. I have been so busy this weekend that I haven't had much time to respond to my mail. Maybe the bumps are just clogged pores from all the sweating from all the heat we have had around here. Maybe??? Just a thought..... Yeah, I thought I paid that much for that bottle.....I knew it was close to 30.00. Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2002 Report Share Posted July 14, 2002 Sorry, I saw your post to dawn after I wrote mine. I have been so busy this weekend that I haven't had much time to respond to my mail. Maybe the bumps are just clogged pores from all the sweating from all the heat we have had around here. Maybe??? Just a thought..... Yeah, I thought I paid that much for that bottle.....I knew it was close to 30.00. Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2002 Report Share Posted July 14, 2002 Sorry, I saw your post to dawn after I wrote mine. I have been so busy this weekend that I haven't had much time to respond to my mail. Maybe the bumps are just clogged pores from all the sweating from all the heat we have had around here. Maybe??? Just a thought..... Yeah, I thought I paid that much for that bottle.....I knew it was close to 30.00. Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Hi Vicki, Yes, I keep hoping that having discontinued the statins, and the mirapex, which is also known to cause muscle problems, these pains will go away. That hope is diminishing a bit each day though. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Hi Vicki, Yes, I keep hoping that having discontinued the statins, and the mirapex, which is also known to cause muscle problems, these pains will go away. That hope is diminishing a bit each day though. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Hi Vicki, Yes, I keep hoping that having discontinued the statins, and the mirapex, which is also known to cause muscle problems, these pains will go away. That hope is diminishing a bit each day though. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 From the bottom of my heart, Vicki, thank you!!! Being here has gained me a family....a way to vent and wail and not feel too stupid or bad about it...and a way to get stronger with a lot of help from my friends. I don't think we can ever thank you enough for your selflessness and care and compassion...although there are times, I know, you must want to knock some of our heads together (I'm not naming names...just a general observation!) You are one hell of a good woman and I'm mighty proud to call you friend! Love! Lynn --- Dawn Green wrote: > I'm sure I speak for many other members when I say a > huge, heartfelt > " THANKYOU, THANKYOU, THANKYOU!!! " for starting this > list. I'd be lost > without you all..... > > Love, > Dawn > > anzavic@... wrote: > > > Hi Tenayahh..... > > > > ****My CPK in March was 370 and in June 293.***** > > > > You're starting off the same way I did. Low CPK's > but still sick and > > unable to do much of anything. At least your > doctor is paying attention > > to you and did the biopsy and ordered the antibody > tests. > > > > The Jo-1 test is really a necessary thing to get > when you have PM.... DM > > has a lower percentage of getting it but it's > still there. It is a > > marker for Interstitial Lung disease but if caught > early you can keep it > > from developing into a lung disease. > > > > You might have already seen this site but I'll > send it anyway.... > > > > <a > href= " http://www.lungusa.org/diseases/pulmfibrosis.html " > > click here > > </a> > > > > I started out with Interstitial lung then it moved > into Pulmonary > > Fibrosis before I started the Enbrel. In your > Aunt and Uncle's case, > > it must have been IPF.... in other words, they > didn't know what caused > > it and therefor can't control it. > > > > I was put on the Enbrel for my muscle > inflammation. We had no idea > > that it was going to work on the lungs. Imagine > my surprise when the > > trials were over and they found that the drug did > work for many of these > > people. > > > > It's good to hear your hubby has gone with you on > your appt's. I think > > that's very important because he needs to > understand all that's > > happening to you. > > What a nice guy! > > > > Before I started this group, there was little > available to really talk > > or even if you wanted to vent. Maybe it was me > but I felt out of place > > whining to people who just wanted to hear facts... > not whining. LOL... > > so I made a whining list.... No, not really.... I > do believe that when > > a person is sick with a chronic illness he/she > will have those days that > > you want to scream. The days when nothing is > going right, you hurt, you > > didn't get a good nights sleep, the pred is making > you cranky, you're > > going through so many highs and lows you can't > keep up with yourself, > > you're bloated like a balloon, and your sick to > your stomach from the > > drugs. Gosh, I think you deserve to whine a > little or a lot. The best > > medicine in the world is to let it all out. > Venting is good for the > > soul. > > > > We've all been there and you're going to have good > times and bad times. > > If you've read the back posts you've also read > that when we're up, we > > want people to know it. It's just good for you. > > > > I also belong to another list for IPF people and > NO ONE talks about how > > they feel or what's on their minds. Talk about > boring. Some of them > > talk to me privately and then vent.... I'm not > sure if the owner of the > > list wants it that way or maybe other members have > stated it's for facts > > only. > > That's pretty silly to me.... > > > > Take care, > > Vicki > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 From the bottom of my heart, Vicki, thank you!!! Being here has gained me a family....a way to vent and wail and not feel too stupid or bad about it...and a way to get stronger with a lot of help from my friends. I don't think we can ever thank you enough for your selflessness and care and compassion...although there are times, I know, you must want to knock some of our heads together (I'm not naming names...just a general observation!) You are one hell of a good woman and I'm mighty proud to call you friend! Love! Lynn --- Dawn Green wrote: > I'm sure I speak for many other members when I say a > huge, heartfelt > " THANKYOU, THANKYOU, THANKYOU!!! " for starting this > list. I'd be lost > without you all..... > > Love, > Dawn > > anzavic@... wrote: > > > Hi Tenayahh..... > > > > ****My CPK in March was 370 and in June 293.***** > > > > You're starting off the same way I did. Low CPK's > but still sick and > > unable to do much of anything. At least your > doctor is paying attention > > to you and did the biopsy and ordered the antibody > tests. > > > > The Jo-1 test is really a necessary thing to get > when you have PM.... DM > > has a lower percentage of getting it but it's > still there. It is a > > marker for Interstitial Lung disease but if caught > early you can keep it > > from developing into a lung disease. > > > > You might have already seen this site but I'll > send it anyway.... > > > > <a > href= " http://www.lungusa.org/diseases/pulmfibrosis.html " > > click here > > </a> > > > > I started out with Interstitial lung then it moved > into Pulmonary > > Fibrosis before I started the Enbrel. In your > Aunt and Uncle's case, > > it must have been IPF.... in other words, they > didn't know what caused > > it and therefor can't control it. > > > > I was put on the Enbrel for my muscle > inflammation. We had no idea > > that it was going to work on the lungs. Imagine > my surprise when the > > trials were over and they found that the drug did > work for many of these > > people. > > > > It's good to hear your hubby has gone with you on > your appt's. I think > > that's very important because he needs to > understand all that's > > happening to you. > > What a nice guy! > > > > Before I started this group, there was little > available to really talk > > or even if you wanted to vent. Maybe it was me > but I felt out of place > > whining to people who just wanted to hear facts... > not whining. LOL... > > so I made a whining list.... No, not really.... I > do believe that when > > a person is sick with a chronic illness he/she > will have those days that > > you want to scream. The days when nothing is > going right, you hurt, you > > didn't get a good nights sleep, the pred is making > you cranky, you're > > going through so many highs and lows you can't > keep up with yourself, > > you're bloated like a balloon, and your sick to > your stomach from the > > drugs. Gosh, I think you deserve to whine a > little or a lot. The best > > medicine in the world is to let it all out. > Venting is good for the > > soul. > > > > We've all been there and you're going to have good > times and bad times. > > If you've read the back posts you've also read > that when we're up, we > > want people to know it. It's just good for you. > > > > I also belong to another list for IPF people and > NO ONE talks about how > > they feel or what's on their minds. Talk about > boring. Some of them > > talk to me privately and then vent.... I'm not > sure if the owner of the > > list wants it that way or maybe other members have > stated it's for facts > > only. > > That's pretty silly to me.... > > > > Take care, > > Vicki > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 From the bottom of my heart, Vicki, thank you!!! Being here has gained me a family....a way to vent and wail and not feel too stupid or bad about it...and a way to get stronger with a lot of help from my friends. I don't think we can ever thank you enough for your selflessness and care and compassion...although there are times, I know, you must want to knock some of our heads together (I'm not naming names...just a general observation!) You are one hell of a good woman and I'm mighty proud to call you friend! Love! Lynn --- Dawn Green wrote: > I'm sure I speak for many other members when I say a > huge, heartfelt > " THANKYOU, THANKYOU, THANKYOU!!! " for starting this > list. I'd be lost > without you all..... > > Love, > Dawn > > anzavic@... wrote: > > > Hi Tenayahh..... > > > > ****My CPK in March was 370 and in June 293.***** > > > > You're starting off the same way I did. Low CPK's > but still sick and > > unable to do much of anything. At least your > doctor is paying attention > > to you and did the biopsy and ordered the antibody > tests. > > > > The Jo-1 test is really a necessary thing to get > when you have PM.... DM > > has a lower percentage of getting it but it's > still there. It is a > > marker for Interstitial Lung disease but if caught > early you can keep it > > from developing into a lung disease. > > > > You might have already seen this site but I'll > send it anyway.... > > > > <a > href= " http://www.lungusa.org/diseases/pulmfibrosis.html " > > click here > > </a> > > > > I started out with Interstitial lung then it moved > into Pulmonary > > Fibrosis before I started the Enbrel. In your > Aunt and Uncle's case, > > it must have been IPF.... in other words, they > didn't know what caused > > it and therefor can't control it. > > > > I was put on the Enbrel for my muscle > inflammation. We had no idea > > that it was going to work on the lungs. Imagine > my surprise when the > > trials were over and they found that the drug did > work for many of these > > people. > > > > It's good to hear your hubby has gone with you on > your appt's. I think > > that's very important because he needs to > understand all that's > > happening to you. > > What a nice guy! > > > > Before I started this group, there was little > available to really talk > > or even if you wanted to vent. Maybe it was me > but I felt out of place > > whining to people who just wanted to hear facts... > not whining. LOL... > > so I made a whining list.... No, not really.... I > do believe that when > > a person is sick with a chronic illness he/she > will have those days that > > you want to scream. The days when nothing is > going right, you hurt, you > > didn't get a good nights sleep, the pred is making > you cranky, you're > > going through so many highs and lows you can't > keep up with yourself, > > you're bloated like a balloon, and your sick to > your stomach from the > > drugs. Gosh, I think you deserve to whine a > little or a lot. The best > > medicine in the world is to let it all out. > Venting is good for the > > soul. > > > > We've all been there and you're going to have good > times and bad times. > > If you've read the back posts you've also read > that when we're up, we > > want people to know it. It's just good for you. > > > > I also belong to another list for IPF people and > NO ONE talks about how > > they feel or what's on their minds. Talk about > boring. Some of them > > talk to me privately and then vent.... I'm not > sure if the owner of the > > list wants it that way or maybe other members have > stated it's for facts > > only. > > That's pretty silly to me.... > > > > Take care, > > Vicki > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2003 Report Share Posted January 14, 2003 I certainly will... and thank you also for helping with this! I will keep you posted. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2003 Report Share Posted January 14, 2003 I certainly will... and thank you also for helping with this! I will keep you posted. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2003 Report Share Posted January 14, 2003 I certainly will... and thank you also for helping with this! I will keep you posted. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2006 Report Share Posted April 13, 2006 Vicki, Welcome by the way...2 of my 3 wigs were 's - hey, I may not have had her B* & ^%, but I had her hair! She really makes a beautiful product and so real looking. Best, Quote Link to comment Share on other sites More sharing options...
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