Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 Debbie: I agree with you in so far as the socially acceptable aspect goes, but was down right insulting. The funny part of this whole thing is I think it started with my post a few days ago. He was downright nasty about another poster to me. I did not ans his post. Then again about the iodine. I did not ans his post and again about the magnesium (which I am not even using at this time). Nasty is not acceptable by anyone. I wont tolerate it from my own son and I know it wont be tolerated by others. Now I have no problem with being corrected or advised. If I chose not to accept that advise that is my business. , you just came across to me that you were downright angry with me for not acknowleging your post and furious that your advise was not followed. Well that is too bad. Debbie: You are certainly entitled to your own opinion and I honestly agree with just about all of it. There is one thing I do take offense to is that agreed with the enzymes but sounds to me nothing else. Well this board has alot more that enzymes being discussed with alot of success. Sorry, this is just how I see things. Eileen > there was one more thing I would like to add..that is > this, sometimes autism is rude..sometimes it can be > abusive..it is not the person or the soul that is > inside... it is the autism. If it were pretty and > socially acceptable would we want to change some of > the things we see in our own children? He deserves the > same understanding as our loved ones do. He is just as > much worth listening to as your child or mine. Even > when it comes out wrong. > --- Debbie Graves <gravesfmly@y...> wrote: > > > Gosh it sounds like you may even be mad at me. I > > just > > have a lot of compassion for other people. Honestly > > I > > could tell long ago that was autistic. I can > > tell he has a lot of pain connected with some of his > > statements and I have learned to read between the > > lines with folks. I am not always right but I > > believe > > the only way to change the way someone addresses you > > is to counter with understanding and support > > (sometimes even when they are wrong) Especially when > > you are dealing with autism. Love is a language > > everyone understands...unfortunately not to many > > people are willing to go that route these days. The > > only way any offense can get through is to let it. I > > am not any more offended by him then I am someone > > who > > is ugly in traffic, maybe even less so. Even if > > > > chewed me up, I know the truth about who I am and > > what > > I am trying to accomplish with my child..Nothing > > else > > matters..well my husband and God thats it though. I > > have also learned that there is a lot of care and > > love > > for one another on this board..maybe the rudeness > > just > > comes from a lot of pain that we dont understand..I > > wont judge him.I do teach my children to have > > respect > > for others...but they have not lived his life, we do > > not know his situation. Hopefully my daughter wont > > be > > judged when she is older if she has a meltdown or > > says > > something wrong, but..I think I will plant seeds of > > compassion now for her sake in the future. God Bless > > --- robinsnd <Jill@j...> wrote: > > > > > > > > Well, Debbie it's nice that you're not offended. > > I > > > am an infrequent lister, but I find it pretty > > > weird that people wouldn't be put off by being > > told > > > that the average age of these listers is > > > 8 or 9. That's abusive and unnecessary and in my > > > opinion reflects some imbalance (and > > > aren't we trying to achieve balanced brain > > > chemistry?). A point can be made without > > > resorting to insults. > > > > > > There are plenty of knowledgeable sources that > > will > > > speak with respect, and those are the > > > ones I will gravitate to. > > > > > > -Jill, an Ivy Leaguer > > > > > > > > > i think i must be writing to advanced for people, > > > the reading age of > > > these boards is about eight or nine really > > > > > > > > > > > > > Hello , my name is Debbie. I am the mom of > > a > > > very special little girl, 8yrs old > > > who is autistic or heavy metal poisoned or what > > ever > > > label you may be comfortable with. I > > > rarely talk about anything on this board only when > > > something really catches my attention. > > > Mostly I just listen, and watch to see what moms > > are > > > trying and how it is working. > > > Personally speaking I have learned over time and > > > from what has happened to my beautiful > > > daughter that is the best way to gather > > information. > > > Another thing I have learned is that > > > when someone is offended it is typically something > > > that really makes them think, and > > > maybe hurt a little about what ever the case may > > be. > > > We cannot afford to stay offended for > > > long. As in my daughters case I am simply trying > > to > > > be the best mom I can be to my little > > > girl and help her live a better quality life by > > not > > > having so many bowel issues. We do > > > supplement, and use a pro biotic, but anything we > > do > > > for her we go to far many more > > > sources then the Internet and we > > > > pray about any thing we may want to start. I > > have > > > seen some of the things you have > > > posted, and personally never been offended. But > > > after having my child poisoned, been lied > > > to by the government and the medical community it > > is > > > pretty hard to offend me. I think we > > > all need to keep in mind here (if I may say so) > > that > > > we are all in this together...we all > > > obviously love these special people in our lives. > > > you should speak up...maybe you > > > are the balance to the other side of > > things...Never > > > stop talking about this subject, that is > > > the only way we are going to get answers. The > > > government sure isn't worried that my > > > daughter has the struggles in life that she does. > > At > > > least we all have the courage to look > > > for the truth.Never stop doing that! > > > > > > > > > > > > > > > > > > > > > > > __________________________________ > > Do you ? > > - 250MB free storage. Do more. Manage > > less. > > http://info.mail./mail_250 > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 Eileen, I agree. I am extremely understanding and do my best to approach everything with an attitude of love. I also agree that autism is often times rude. Having said that, I have read lots and lots of things written by adult autistics who talk about learning how to be less rude and how to work within the social order. Most of them wanted to learn those lessons and tried hard to understand us NTs, just like we try to understand autism. I do not allow my daughter to be nasty either. Yes there are times when she has a meltdown and honestly can't control her behavior. didn't appear to me to be having a meltdown. Perhaps as much as we can learn from him, he can learn from us about how the world works. We are probably more understanding of behavior than most of the world because we live with children who have autism. So if he can learn from us that his approach might be improved, it might help him in interactions outside of this group. It does not mean we are not loving nor that we are judgmental simply because we don't appreciate language that is insulting. I seriously doubt that every adult autistic person acts this way. One thing we need to remember is that autism doesn't mean people are not individuals with their own individual behaviors. There are times when my daughter's actions are because of her autism and at other times, it's because she is a kid acting like a kid, sometimes a kid misbehaving. I don't think I help her if I just accept everything she does and give her a pass on behavior because of autism. She is far too smart to be treated that way. I would love to hear 's insights, but I don't think it is wrong to suggest to him that there are better ways to communicate than the way he is choosing. We are all in this to learn and I happen to think folks with autism can learn just the rest of us. Re: Debbie Debbie: I agree with you in so far as the socially acceptable aspect goes, but was down right insulting. The funny part of this whole thing is I think it started with my post a few days ago. He was downright nasty about another poster to me. I did not ans his post. Then again about the iodine. I did not ans his post and again about the magnesium (which I am not even using at this time). Nasty is not acceptable by anyone. I wont tolerate it from my own son and I know it wont be tolerated by others. Now I have no problem with being corrected or advised. If I chose not to accept that advise that is my business. , you just came across to me that you were downright angry with me for not acknowleging your post and furious that your advise was not followed. Well that is too bad. Debbie: You are certainly entitled to your own opinion and I honestly agree with just about all of it. There is one thing I do take offense to is that agreed with the enzymes but sounds to me nothing else. Well this board has alot more that enzymes being discussed with alot of success. Sorry, this is just how I see things. Eileen > there was one more thing I would like to add..that is > this, sometimes autism is rude..sometimes it can be > abusive..it is not the person or the soul that is > inside... it is the autism. If it were pretty and > socially acceptable would we want to change some of > the things we see in our own children? He deserves the > same understanding as our loved ones do. He is just as > much worth listening to as your child or mine. Even > when it comes out wrong. > --- Debbie Graves <gravesfmly@y...> wrote: > > > Gosh it sounds like you may even be mad at me. I > > just > > have a lot of compassion for other people. Honestly > > I > > could tell long ago that was autistic. I can > > tell he has a lot of pain connected with some of his > > statements and I have learned to read between the > > lines with folks. I am not always right but I > > believe > > the only way to change the way someone addresses you > > is to counter with understanding and support > > (sometimes even when they are wrong) Especially when > > you are dealing with autism. Love is a language > > everyone understands...unfortunately not to many > > people are willing to go that route these days. The > > only way any offense can get through is to let it. I > > am not any more offended by him then I am someone > > who > > is ugly in traffic, maybe even less so. Even if > > > > chewed me up, I know the truth about who I am and > > what > > I am trying to accomplish with my child..Nothing > > else > > matters..well my husband and God thats it though. I > > have also learned that there is a lot of care and > > love > > for one another on this board..maybe the rudeness > > just > > comes from a lot of pain that we dont understand..I > > wont judge him.I do teach my children to have > > respect > > for others...but they have not lived his life, we do > > not know his situation. Hopefully my daughter wont > > be > > judged when she is older if she has a meltdown or > > says > > something wrong, but..I think I will plant seeds of > > compassion now for her sake in the future. God Bless > > --- robinsnd <Jill@j...> wrote: > > > > > > > > Well, Debbie it's nice that you're not offended. > > I > > > am an infrequent lister, but I find it pretty > > > weird that people wouldn't be put off by being > > told > > > that the average age of these listers is > > > 8 or 9. That's abusive and unnecessary and in my > > > opinion reflects some imbalance (and > > > aren't we trying to achieve balanced brain > > > chemistry?). A point can be made without > > > resorting to insults. > > > > > > There are plenty of knowledgeable sources that > > will > > > speak with respect, and those are the > > > ones I will gravitate to. > > > > > > -Jill, an Ivy Leaguer > > > > > > > > > i think i must be writing to advanced for people, > > > the reading age of > > > these boards is about eight or nine really > > > > > > > > > > > > > Hello , my name is Debbie. I am the mom of > > a > > > very special little girl, 8yrs old > > > who is autistic or heavy metal poisoned or what > > ever > > > label you may be comfortable with. I > > > rarely talk about anything on this board only when > > > something really catches my attention. > > > Mostly I just listen, and watch to see what moms > > are > > > trying and how it is working. > > > Personally speaking I have learned over time and > > > from what has happened to my beautiful > > > daughter that is the best way to gather > > information. > > > Another thing I have learned is that > > > when someone is offended it is typically something > > > that really makes them think, and > > > maybe hurt a little about what ever the case may > > be. > > > We cannot afford to stay offended for > > > long. As in my daughters case I am simply trying > > to > > > be the best mom I can be to my little > > > girl and help her live a better quality life by > > not > > > having so many bowel issues. We do > > > supplement, and use a pro biotic, but anything we > > do > > > for her we go to far many more > > > sources then the Internet and we > > > > pray about any thing we may want to start. I > > have > > > seen some of the things you have > > > posted, and personally never been offended. But > > > after having my child poisoned, been lied > > > to by the government and the medical community it > > is > > > pretty hard to offend me. I think we > > > all need to keep in mind here (if I may say so) > > that > > > we are all in this together...we all > > > obviously love these special people in our lives. > > > you should speak up...maybe you > > > are the balance to the other side of > > things...Never > > > stop talking about this subject, that is > > > the only way we are going to get answers. The > > > government sure isn't worried that my > > > daughter has the struggles in life that she does. > > At > > > least we all have the courage to look > > > for the truth.Never stop doing that! > > > > > > > > > > > > > > > > > > > > > > > __________________________________ > > Do you ? > > - 250MB free storage. Do more. Manage > > less. > > http://info.mail./mail_250 > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 Absolutely no offense taken. I truly understand how you felt. I dont think anyone is mad. I do agree that seems to have understood his miscommunication. Thats great too. I think we all need to go on with other topics at this point so we can continue to learn from each other. Eileen >From: Debbie Graves <gravesfmly@...> >Reply- > >Subject: Re: Elaine and >Date: Mon, 24 Jan 2005 18:36:13 -0800 (PST) > > >I really do understand that bad behavior is not >tolerated, any where you go in society. I know that >some behavior is uncalled for. I never meant to imply >that you should not be given respect..you should. I >guess more then anything, I was touched when he said >some of the things he said in one of his emails. It >was about if he should be silent,and that having to >be silent is the same as a person who has no worth. >Think about that..that is an important perspective. >One us moms need to hear.. For whatever reason that >got my attention. God forbid if I don't tell another >human being when I think they may need to hear it that >they are very valuable. That is what I was attempting >to do. I just heard some pain..this is not an easy >road we are on. I hope I haven't made anybody mad. >That is not my intention. I really don't want to loose >'s opinions. I have noticed his last few posts >have been OK..maybe he did learn his lesson. > > >--- Blackmon <blackmon@...> wrote: > > > Eileen, > > I agree. I am extremely understanding and do my best > > to approach everything with an attitude of love. I > > also agree that autism is often times rude. Having > > said that, I have read lots and lots of things > > written by adult autistics who talk about learning > > how to be less rude and how to work within the > > social order. Most of them wanted to learn those > > lessons and tried hard to understand us NTs, just > > like we try to understand autism. > > I do not allow my daughter to be nasty either. Yes > > there are times when she has a meltdown and honestly > > can't control her behavior. didn't appear to > > me to be having a meltdown. Perhaps as much as we > > can learn from him, he can learn from us about how > > the world works. > > We are probably more understanding of behavior than > > most of the world because we live with children who > > have autism. So if he can learn from us that his > > approach might be improved, it might help him in > > interactions outside of this group. > > It does not mean we are not loving nor that we are > > judgmental simply because we don't appreciate > > language that is insulting. I seriously doubt that > > every adult autistic person acts this way. One thing > > we need to remember is that autism doesn't mean > > people are not individuals with their own individual > > behaviors. There are times when my daughter's > > actions are because of her autism and at other > > times, it's because she is a kid acting like a kid, > > sometimes a kid misbehaving. > > I don't think I help her if I just accept everything > > she does and give her a pass on behavior because of > > autism. She is far too smart to be treated that way. > > I would love to hear 's insights, but I don't > > think it is wrong to suggest to him that there are > > better ways to communicate than the way he is > > choosing. We are all in this to learn and I happen > > to think folks with autism can learn just the rest > > of us. > > > > Re: Debbie > > > > > > > > Debbie: I agree with you in so far as the > > socially acceptable aspect > > goes, but was down right insulting. The > > funny part of this > > whole thing is I think it started with my post a > > few days ago. He > > was downright nasty about another poster to me. I > > did not ans his > > post. Then again about the iodine. I did not ans > > his post and again > > about the magnesium (which I am not even using at > > this time). Nasty > > is not acceptable by anyone. I wont tolerate it > > from my own son and > > I know it wont be tolerated by others. Now I have > > no problem with > > being corrected or advised. If I chose not to > > accept that advise > > that is my business. , you just came across > > to me that you > > were downright angry with me for not acknowleging > > your post and > > furious that your advise was not followed. Well > > that is too bad. > > > > Debbie: You are certainly entitled to your own > > opinion and I > > honestly agree with just about all of it. There > > is one thing I do > > take offense to is that agreed with the > > enzymes but sounds to > > me nothing else. Well this board has alot more > > that enzymes being > > discussed with alot of success. Sorry, this is > > just how I see > > things. Eileen > > > > > > > there was one more thing I would like to > > add..that is > > > this, sometimes autism is rude..sometimes it can > > be > > > abusive..it is not the person or the soul that > > is > > > inside... it is the autism. If it were pretty > > and > > > socially acceptable would we want to change some > > of > > > the things we see in our own children? He > > deserves the > > > same understanding as our loved ones do. He is > > just as > > > much worth listening to as your child or mine. > > Even > > > when it comes out wrong. > > > --- Debbie Graves <gravesfmly@y...> wrote: > > > > > > > Gosh it sounds like you may even be mad at me. > > I > > > > just > > > > have a lot of compassion for other people. > > Honestly > > > > I > > > > could tell long ago that was autistic. > > I can > > > > tell he has a lot of pain connected with some > > of his > > > > statements and I have learned to read between > > the > > > > lines with folks. I am not always right but I > > > > believe > > > > the only way to change the way someone > > addresses you > > > > is to counter with understanding and support > > > > (sometimes even when they are wrong) > > Especially when > > > > you are dealing with autism. Love is a > > language > > > > everyone understands...unfortunately not to > > many > > > > people are willing to go that route these > > days. The > > > > only way any offense can get through is to let > > it. I > > > > am not any more offended by him then I am > > someone > > > > who > > > > is ugly in traffic, maybe even less so. Even > > if > > > > > > > > chewed me up, I know the truth about who I am > > and > > > > what > > > > I am trying to accomplish with my > > child..Nothing > > > > else > > > > matters..well my husband and God thats it > > though. I > > > > have also learned that there is a lot of care > > and > > > > love > > > > for one another on this board..maybe the > > rudeness > > > > just > > > > comes from a lot of pain that we dont > > understand..I > > > > wont judge him.I do teach my children to have > > > > respect > > > > for others...but they have not lived his life, > > we do > > > > not know his situation. Hopefully my daughter > > wont > > > > be > > > > judged when she is older if she has a meltdown > > or > > > > says > > > > something wrong, but..I think I will plant > > seeds of > > > > compassion now for her sake in the future. God > > Bless > > > > --- robinsnd <Jill@j...> wrote: > > > > > > > > > > > > > > Well, Debbie it's nice that you're not > > offended. > > > > I > > > > > am an infrequent lister, but I find it > > pretty > > > > > weird that people wouldn't be put off by > > being > > > > told > > > > > that the average age of these listers is > > > > > 8 or 9. That's abusive and unnecessary and > > in my > > > > > opinion reflects some imbalance (and > > > > > aren't we trying to achieve balanced brain > > > > > chemistry?). A point can be made without > > > > > resorting to insults. > > > > > > > > > > There are plenty of knowledgeable sources > > that > > > > will > > > > > speak with respect, and those are the > > > > > ones I will gravitate to. > > > > > > > > > > -Jill, an Ivy Leaguer > > > > > > > > > > > > > > > i think i must be writing to advanced for > > people, > > > > > the reading age of > > > > > these boards is about eight or nine really > > >=== message truncated === > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2005 Report Share Posted July 22, 2005 In a message dated 7/22/2005 7:02:46 PM Eastern Standard Time, writes: So I'm hoping the Doxy has been doing it's job - I started last Friday and it's a ten-day course. UMMMM maybe i missed the first part of your discussion, but ten days? that is not sufficient for lyme........ please use a LLMD or educate your doctor...... c in vt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 Happy Birthday!!! Hope we all remember to celebrate the day, every day. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 --- tauttodream <tauttodream@...> wrote: > congrats debby! i for one and happy you are a > moderator and love your > advice...u relate to me in a comforting way just > like bee does... Thanks Sue. > I think i eat cheats because i am hungry and want to > gain weight. I > dont know if it is an emotional issue as i dont feel > emotionally tied > up i just am starving and skinny and that bothers > me. Maybe being thin > makes me feel weak as a person... Well if you are hungry you should eat more.. especially fatty meats. You are cheating because you haven't gotten the sugar out of your system, and gone through withdrawel. Each time you go back to it you are restarting the process over and over again. The best way for you to get this done is to make a plan. Cook a bunch of foods in advance, and cook each day plenty of food and eat when you are hungry. Other wise you are going to be stuck being hungry with no appropriate food available. Always bring food with you so that you have no reason to cheat. Luv, Debby San , CA Website for my son Hunter Hudson, born 10/11/04: http://debbypadilla.0catch.com/hunter/ Today is the most important day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2008 Report Share Posted September 17, 2008 Debby  I dont even know if the baking soda has done anything. But I retraced my steps,and it worked. The tonic on its own may have worked. But if I'm in real trouble,I'm not inclined to experiement.I have pased plenty of parasites and flukes. I wasnt quite sure what it was that I passed - but it was about an inch in diameter and the hot flushes stopped straight away. Previously, about two years ago, what I passed was distinctly pink pieces of flesh. All sorts of things came out at that time - I wondered if I was living in the real world.  I found out that the most frighteneing looking thing I passed was a mucoid plaque. Thats a long ropey looking thing about 9 inches long and a half and inch or more think. I matched that up to photos on the net.    From: Debby Padilla-Hudson <debbypadilla@...> Subject: Re: I've done it again - meaasurements! candidiasis Received: Wednesday, 17 September, 2008, 2:16 PM I'm concerned because the information you are giving out is unscientific and potentially dangerous, so I feel compelled to comment. I am glad you found something that you feel is helping you, but I think it's a tad unethical to share it unless you have a good idea what the potential repercussions are. It's possible you were passing parasites or flukes, and not tumors, particularly because as I said in a previous email, the baking soda would do nothing but neutralize your stomach acid.. a bad thing because most people with dysbiosis have low stomach acidity already, which is what creates an environment for bacteria/fungi to flourish. I'm guessing that some of the other factors in your protocol are doing something here, but I wouldn't know what without knowing what the ingredients in the products were. Luv, Debby in San , CA 147 pounds lost! 100% of health issues reversed! Currently studying for Nutrition license and PhD in Psychology Group: http://health. groups.. com/group/ curingcandida/ Website: http://www.naturall ythriving. com ----- Original Message ---- > From: Helen deHavilland > > Debby > > I'm not saying that swallowing baking powder is a good idea - though plenty of > people have suggested that it is. > > I merely said what I did. But it does make me feel a whole lot better. I know > the problem with stomach acid is a real one. > > Helen Make the switch to the world & #39;s best email. Get 7 Mail! http://au./y7mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2008 Report Share Posted September 18, 2008 Many of these things can look alike, particularly when they are obfuscated by poop, literally. Next time you do this, scoop some samples out of the toilet and have them analyzed. Labs can identify these things, and then you can provide some validity to what you are proposing. That's my suggestion anyways. Luv, Debby in San , CA 147 pounds lost! 100% of health issues reversed! Currently studying for Nutrition license and PhD in Psychology Group: curingcandida/ Website: http://www.naturallythriving.com ----- Original Message ---- > From: Helen deHavilland > > Debby > > I dont even know if the baking soda has done anything. But I retraced my > steps,and it worked. The tonic on its own may have worked. But if I'm in real > trouble,I'm not inclined to experiement.I have pased plenty of parasites and > flukes. I wasnt quite sure what it was that I passed - but it was about an inch > in diameter and the hot flushes stopped straight away. > Previously, about two years ago, what I passed was distinctly pink pieces of > flesh. All sorts of things came out at that time - I wondered if I was living in > the real world. > > I found out that the most frighteneing looking thing I passed was a mucoid > plaque. Thats a long ropey looking thing about 9 inches long and a half and inch > or more think. I matched that up to photos on the net. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 Thanks Pam! I don't know how you and others do it. You are so helpful to so many. I just am not very computer smart and with raising 2 young grandchildren I don't have a lot of time or sometimes mind. Thanks again...Debbie > > I have the complete list of Florida support groups I can send you if you send me your email addy. I am figment@... Also they are listed in the files section at: FLHepCSupport/ and at http://www.healsofnfl.bravehost.com/ (I haven't had much time to keep up with some of these sites but the info there is pretty current) > > Peace > Pam > > PS - Still having computer probs :-( > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 G'day Debbie, I too endorse what my fellow compatriate Sue had to say. I wrote a diary (not very good), but did record all the side effects I had from Glivec and what I did, I refused to let CML run my life and still do. Life does get better and I am now 18 months down the track. Sadly Glivec wasn't for me, I could only tolerate 200mg, but I was lucky to be able to change over to Tasigna and no entries in my diary since. I well remember my first 4 days on Glivec - nothing happened for 3 days then I woke up feeling like I had hit a brick wall front on and then struggled for the next 3 days as in my job we were having an accreditation visit in 3 days. I don't know how I got through that day but I did and we got 20/20 which was even better! In the early days of Glivec I was so tired I would have to sit in the car at lunchtime and sleep for 45 mins. I would set my phone alarm and having the snooze helped me cope for the day. I am a night owl and would have to go to bed at 9pm, but eventually that got better and soon I was back to my old habits of not going to bed until midnight. The only symptoms I had of CML was aches and pains in all my joints and feeling tired as my initial white cell climb was found incidentally and I had no other symptoms. About 3 weeks into having Glivec I woke up one morning and found I didn't ache any more! Bone pain - well I was blessed in that I only ever had a couple of slight transient aches in my arm, however it seems the more disease burden you have the worse the pain as Glivec is doing it's job killing off the nasty little phillies. Throughout all this I have worked full time with a busy and demanding job, shown my Labradors (they were the reason I got out of bed most days), have sleepless nights whelping puppies and then had family staying for 6 months and finally my husband had a stroke in August last year and I'm now his carer. Life goes on and we deal with it the best way we can. Life never stays still! Now - my daughter, her 2 children and a friend who is staying with me and her 6 year old who has Angelman's syndrome (she was displaced by our bushfires) have broken out with the chicken pox!!!!! So am I now going to get them??? Que sera que sera.(sp) The joys of living! Regards, from Down Under #1149 Zavies Zero Club Dx: 25/07/07 Commenced Glivec 400mg 27/9/07 Changed to Tasigna 800mg 3/8/08 PCRs: 23/01/08 - 13.01 % 14/04/08 - 0.08 % 12/05/08 - 0.02% (Glivec 200mg) 06/08/08 - 0.09 % (commenced Tasigna) 30/09/08 - 0.18 % 19/12/08 - 0.00% Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 Ah Bobbie - it was well and truly too late! When my grandson came down with them we thought they were insect bites by the pattern and he didn't have a runny nose or any other symptom. If I get them I get them! PS - congratson going into the Ariad trial. Regards, Rodorbal Labradors Australia www.rodorbal.com http://au./group/Ozlabradors/ www.labradata.org From: [mailto: ] On Behalf Of ROBERTA DOYLE Sent: Sunday, 1 March 2009 1:13 PM Subject: Re: [ ] Debbie , have you ever had the chicken pox? If not, stay clear of those that have them. Childhood diseases are not what you want, When I was pregnant with my 4th, I came down with the 7 day measles, got them from my girl friend's kids. I was never so sick in my life, pneumonia, sinusitis, pleuresy, and the day I broke out with the measles, my kids broke out with the chicken pox. What a nightmare that month was, baby was born 3 weeks early, and had to stay in the hospital for 6 weeks until all of the kids went through the pox and the measles, my son had both at the same time. So, beware my friend, do not go near them if you have not had the pox, actually I have heard of people getting it twice!! Good luck, blessings, Bobby From: Malseed <rodorbal@... <mailto:rodorbal%40westvic.com.au> > Subject: [ ] Debbie <mailto:%40> Date: Saturday, February 28, 2009, 8:20 PM G'day Debbie, I too endorse what my fellow compatriate Sue had to say. I wrote a diary (not very good), but did record all the side effects I had from Glivec and what I did, I refused to let CML run my life and still do. Life does get better and I am now 18 months down the track. Sadly Glivec wasn't for me, I could only tolerate 200mg, but I was lucky to be able to change over to Tasigna and no entries in my diary since. I well remember my first 4 days on Glivec - nothing happened for 3 days then I woke up feeling like I had hit a brick wall front on and then struggled for the next 3 days as in my job we were having an accreditation visit in 3 days. I don't know how I got through that day but I did and we got 20/20 which was even better! In the early days of Glivec I was so tired I would have to sit in the car at lunchtime and sleep for 45 mins. I would set my phone alarm and having the snooze helped me cope for the day. I am a night owl and would have to go to bed at 9pm, but eventually that got better and soon I was back to my old habits of not going to bed until midnight. The only symptoms I had of CML was aches and pains in all my joints and feeling tired as my initial white cell climb was found incidentally and I had no other symptoms. About 3 weeks into having Glivec I woke up one morning and found I didn't ache any more! Bone pain - well I was blessed in that I only ever had a couple of slight transient aches in my arm, however it seems the more disease burden you have the worse the pain as Glivec is doing it's job killing off the nasty little phillies. Throughout all this I have worked full time with a busy and demanding job, shown my Labradors (they were the reason I got out of bed most days), have sleepless nights whelping puppies and then had family staying for 6 months and finally my husband had a stroke in August last year and I'm now his carer. Life goes on and we deal with it the best way we can. Life never stays still! Now - my daughter, her 2 children and a friend who is staying with me and her 6 year old who has Angelman's syndrome (she was displaced by our bushfires) have broken out with the chicken pox!!!!! So am I now going to get them??? Que sera que sera.(sp) The joys of living! Regards, from Down Under #1149 Zavies Zero Club Dx: 25/07/07 Commenced Glivec 400mg 27/9/07 Changed to Tasigna 800mg 3/8/08 PCRs: 23/01/08 - 13.01 % 14/04/08 - 0.08 % 12/05/08 - 0.02% (Glivec 200mg) 06/08/08 - 0.09 % (commenced Tasigna) 30/09/08 - 0.18 % 19/12/08 - 0.00% Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 Thanks Trudy. Have any of you ever seen a picture of your own liver? I have the one the surgeon that did my gallbladder surgery. Very interesting. Let me know if you'd like to see it and i'll try to load it here. I don't have a printer that's compatable with windows 7 so i'll try to take a picture of the picture and upload it here. Debbie > > Yes, Goodness, I remember you telling us about that! Shocking! And I hate how a dr will say " it's not possible " when we KNOW better! But here's hoping the condition is not as bad as thought. I will be thinking of you, especially ,on that date. Good thoughts and warm hugs, > Trudy > > http://facebook.com/people/andTrudy-Kinsey/1340460877 " > > " A well- behaved woman never made history " ...Mae West > > http://oktravels.wordpress.com > > http://allrecipes.com/cook/TrudyK/profile.aspx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 No, I've never seen my actual liver. Just the drawings and models in Drs office. But I do have all the pics ( MRI ) of my brain. And I bring them out whenever I forget something...proof that I actually do have one !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 Nov 4, 2010, at 8:50 PM, "debbiecurwick" <debbiecurwick@...> wrote: Thanks Trudy. Have any of you ever seen a picture of your own liver? I have the one the surgeon that did my gallbladder surgery. Very interesting. Let me know if you'd like to see it and i'll try to load it here. I don't have a printer that's compatable with windows 7 so i'll try to take a picture of the picture and upload it here. Debbie > > Yes, Goodness, I remember you telling us about that! Shocking! And I hate how a dr will say" it's not possible "when we KNOW better! But here's hoping the condition is not as bad as thought. I will be thinking of you, especially ,on that date. Good thoughts and warm hugs, > Trudy > > http://facebook.com/people/andTrudy-Kinsey/1340460877 " > > "A well- behaved woman never made history"...Mae West > > http://oktravels.wordpress.com > > http://allrecipes.com/cook/TrudyK/profile.aspx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 Cordie here. to Trudy I wish had some pictures of my brain, of course in my case having a brain does not insure me having a mind!!! Ha hahaFrom: "trudykinsey@..." <trudykinsey@...>" " < >Sent: Thu, November 4, 2010 9:19:05 PMSubject: Re: [ ] Re: Debbie No, I've never seen my actual liver. Just the drawings and models in Drs office. But I do have all the pics ( MRI ) of my brain. And I bring them out whenever I forget something...proof that I actually do have one !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 Nov 4, 2010, at 8:50 PM, "debbiecurwick" <debbiecurwick@...> wrote: Thanks Trudy. Have any of you ever seen a picture of your own liver? I have the one the surgeon that did my gallbladder surgery. Very interesting. Let me know if you'd like to see it and i'll try to load it here. I don't have a printer that's compatable with windows 7 so i'll try to take a picture of the picture and upload it here. Debbie > > Yes, Goodness, I remember you telling us about that! Shocking! And I hate how a dr will say" it's not possible "when we KNOW better! But here's hoping the condition is not as bad as thought. I will be thinking of you, especially ,on that date. Good thoughts and warm hugs, > Trudy > > http://facebook.com/people/andTrudy-Kinsey/1340460877 " > > "A well- behaved woman never made history"...Mae West > > http://oktravels.wordpress.com > > http://allrecipes.com/cook/TrudyK/profile.aspx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 Cordie, I can relate to that one!  My mind is jello lately.  I can't finish anything I start and I start a billion things at once..  either that or I will get lost in front of this stupid computer for hours on end. On Fri, Nov 5, 2010 at 11:21 AM, ann winters <dasflueff@...> wrote:  Cordie here. to Trudy I wish had some pictures of my brain, of course in my case having a brain does not insure me having a mind!!! Ha haha From: " trudykinsey@... " <trudykinsey@...> " " < > Sent: Thu, November 4, 2010 9:19:05 PMSubject: Re: [ ] Re: Debbie  No, I've never seen my actual liver. Just the drawings and models in Drs office. But I do have all the pics ( MRI ) of my brain. And I bring them out whenever I forget something...proof that I actually do have one ! http://facebook.com/people/andTrudy-Kinsey/1340460877  "     " A well- behaved woman never made history " ...Mae West http://oktravels.wordpress.com http://allrecipes.com/cook/TrudyK/profile.aspx   On Nov 4, 2010, at 8:50 PM, " debbiecurwick " <debbiecurwick@...> wrote:  Thanks Trudy. Have any of you ever seen a picture of your own liver? I have the one the surgeon that did my gallbladder surgery. Very interesting. Let me know if you'd like to see it and i'll try to load it here. I don't have a printer that's compatable with windows 7 so i'll try to take a picture of the picture and upload it here. Debbie > > Yes, Goodness, I remember you telling us about that! Shocking! And I hate how a dr will say " it's not possible " when we KNOW better! But here's hoping the condition is not as bad as thought. I will be thinking of you, especially ,on that date. Good thoughts and warm hugs, > Trudy > > http://facebook.com/people/andTrudy-Kinsey/1340460877 " > > " A well- behaved woman never made history " ...Mae West > > http://oktravels.wordpress.com > > http://allrecipes.com/cook/TrudyK/profile.aspx > Quote Link to comment Share on other sites More sharing options...
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