Guest guest Posted July 23, 2003 Report Share Posted July 23, 2003 Very touching and inspirational. I am saving this article for my 10 year old son, who is also been blessed with his special brother. truly blessed > I'm 21 years old and have a 4 1/2 year old brother with PDD-NOS/ADHD. I feel like I play so many roles within my family. I am not only a sister, but a second mom, a friend, and a guardian to my brother...to my parents I am a supportive daughter, private researcher, baby-sitter and third parent...I feel that I am lucky to have such a great brother, such a unique little person in my life that I am proud to help raise. I realize that my parents need my help and I am more than happy to help with my brother. However, I too get overwhelmed living with Autism. At 21 years old I really don't think I should be having arguments about how " we " should handle toilet training and behaviorial issues for my brother. I guess I hold such a different perspective because I am not a " parent " but yet I do see everything they do and go through; and go through most of it as well. So, I am able to see all the things that they miss. I am an objective third party in a way. I am more than willing to gi! > ve my opinions and ideas, but often get into arguments with my mother. I don't feel like I should be put in this position. I know I am part of a team, and I know my role is important and I will always do whatever I need to do for my brother. Yet, my relationship with my parents has changed throughout the years....I feel more like a third parent; given so many responsibilities. As difficult as all of this is I recognize the great strides we, as a family, have accomplished together. I accpet the role that I play and I feel lucky to have such an oppurtunity. Autism has taken over my life....But, you know, I am such a better person now. I see things I never did before. I appreciate the smaller things in life and my patience and compassion has grown tremendously. I am truly blessed. > > thanks for all your support > > ---janet > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 I agree. You are very knowledgeable. I think the idea of putting the vinyl down over the carpet was great. I actually tried to duct tape the inside of my car but it wouldn't work. You would never know by my name but I wanted to tell you . . .I'm a girl. Lou From: trlyblest <trlyblest (DOT) com>Subject: Savemyskin4mebird mitesDate: Sunday, September 14, 2008, 4:15 PM Hi Save,We had all of our carpets ripped out before we started spraying the Clorox/salt mix. I knew that we wouldn't be able to get rid of the mites as long as the carpet was in the house. We were just too heavily infested. I believe Lou sprayed the bleach on his carpet and had success. But during all the spraying I would spray my walls which were Reds, Deep Sage greens and etc.. and it never changed the color of my walls. My furniture was another story! It ruined my furniture. But that's ok. The mites are gone and my furniture can be reupholstered / refinished. Are you spraying anything in your house now? Have you found anything to be effective in your environment? Is it helping?? Keeping everyone in my prayers! > > >> > > If you get the salt and bleach on the carpet does it stain the > > carpet?> > > > > > Also, aren't some people just spraying the salt? I wonder if there > > > would be some way to make the salt mixture into a gel? Then it > > would> > > stick, Mix it with hand sanitizer? Thats a gel.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 You're welcome Mel. > > wow truly blessed. your posts are so helpful. Thank you so much for helping out. > Mel > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 WELCOME, MICHELE, BOBBY a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/5 years 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840Â -Â Â Zavie's Zero Club 09/2006 -Â out of CCR 04/29/08 - XL228 trial/U of Michigan 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial at U. of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial, U. of Michigan 09/08/09 - PCR 0.017 From: <pesty@...> Subject: [ ] Truly blessed Date: Saturday, November 7, 2009, 5:34 AM Â Hi all, I am new to this group, as well as new to CML. I am 29 and was diagnosed on 9/9/09. I have been reading with interest all the posts, but especially the information relating to pre Gleevec days. I just wanted to say that I am truly blessed to have been diagnosed in this era and I take great strength from all of you, knowing what you went through before the introduction of Gleevic. I feel like I have it easy. At the moment I feel like I am a lucky, unlucky girl. I had my first PCR test after one month on Gleevic and find out my results on Wed. I was 100% when diagnosed with a WBC of 245. Fingers crossed. So far my side effects have been minimal, mostly bone pain in my thighs, but nothing a little Paracetamol doesnt releive. Besides I like to think of it as my Golden Bullet sleighing my CML. I hope to speak to you all in the future and thank you so much for sharing your years of experience with us newbees. x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 Hi : Glad you are joining the group, and feel you are getting information to help you. You definitely are truly blessed to be diagnosed in this era. You certainly do not have it easy, but it helps you to deal with what you do have when you see what a lot of us had years ago. I went through the different treatments, and when STI-571 was in clinical trial before it became Gleevec it was not so easy for a lot of us to get into the trial. My doctors did not even help me, and I am sure others had to do the same thing I did. I found the closest place to where I lived so I would not have to travel far. I could not afford it. I live in N.J., and the closest trial was in NY. I had to keep calling them and asking them to give me the initial appointment for at least a consult to get started. One day the receptionist said Oh Your That Girl From New Jersey, Let Me give you an appointment already. It was a matter of getting your foot in the door, and then you were able to push for what you wanted. I do not know if its as hard these days with all the new trials. Always here to help if I can. A > > Hi all, > > I am new to this group, as well as new to CML. I am 29 and was diagnosed on 9/9/09. I have been reading with interest all the posts, but especially the information relating to pre Gleevec days. > > I just wanted to say that I am truly blessed to have been diagnosed in this era and I take great strength from all of you, knowing what you went through before the introduction of Gleevic. I feel like I have it easy. > > At the moment I feel like I am a lucky, unlucky girl. > > I had my first PCR test after one month on Gleevic and find out my results on Wed. I was 100% when diagnosed with a WBC of 245. Fingers crossed. > > So far my side effects have been minimal, mostly bone pain in my thighs, but nothing a little Paracetamol doesnt releive. Besides I like to think of it as my Golden Bullet sleighing my CML. > > I hope to speak to you all in the future and thank you so much for sharing your years of experience with us newbees. > > > x > Quote Link to comment Share on other sites More sharing options...
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