tag:blogger.com,1999:blog-14131376.post7054017120491813824..comments2024-01-30T18:59:38.243+11:00Comments on My Little Drummer Boys: N is for Neurofibromatosis♥.Trish.♥ Drumboyshttp://www.blogger.com/profile/13482654455512269065noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-14131376.post-84843964303664055652009-07-22T12:19:58.110+10:002009-07-22T12:19:58.110+10:00Hi, My family also has NF. we just found out tod...Hi, My family also has NF. we just found out today that my granddaughter has 2 tumors in her brain called bilateral optic tumors. Do you know anything about this and how to deal with these. She's only 2 yrs old. I'd appreciate any info. my e mail is dfuller504@aol.com Thanks, DeniseAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-14131376.post-35255327563031503722009-07-09T16:57:55.022+10:002009-07-09T16:57:55.022+10:00Ok, so I googled your blog for NF, and now I am mo...Ok, so I googled your blog for NF, and now I am more informed. Am off now to read your links.<br /><br />Sounds awful, and I can see why you'd get into a funk every now & again, or often..<br /><br />Thanks for sharing xxLBAhttps://www.blogger.com/profile/05433555112198668513noreply@blogger.comtag:blogger.com,1999:blog-14131376.post-33463294948176105252009-06-07T03:08:16.653+10:002009-06-07T03:08:16.653+10:00A very courageous post, Trish. Thans so much for s...A very courageous post, Trish. Thans so much for sharing xoxoxMissyBoohttps://www.blogger.com/profile/15718948252357141272noreply@blogger.comtag:blogger.com,1999:blog-14131376.post-31812997127817112862009-06-03T10:05:48.672+10:002009-06-03T10:05:48.672+10:00Oh Trish, that is full on. Thanks so much for shar...Oh Trish, that is full on. Thanks so much for sharing here.Louisa Clairehttps://www.blogger.com/profile/01504106677453816810noreply@blogger.comtag:blogger.com,1999:blog-14131376.post-47938606958016717702009-05-31T21:21:37.022+10:002009-05-31T21:21:37.022+10:00Thanks so much for sharing this with us, this dise...Thanks so much for sharing this with us, this disease has touched our family too.<br /> Kisses and hugs xox<br /> kathleenKathleenhttps://www.blogger.com/profile/15881813676056714366noreply@blogger.comtag:blogger.com,1999:blog-14131376.post-11266780855222135962009-05-31T11:43:21.252+10:002009-05-31T11:43:21.252+10:00Thank you for sharing all of that. I have never he...Thank you for sharing all of that. I have never heard of it. I love your blog btw. :)Hills N Valleyshttps://www.blogger.com/profile/17574211660911750013noreply@blogger.comtag:blogger.com,1999:blog-14131376.post-56204796697320363662009-05-31T11:34:59.976+10:002009-05-31T11:34:59.976+10:00It was called Von Recklinghaus Disease back in my ...It was called Von Recklinghaus Disease back in my FIL's day when he was diagnosed and in the late 70's when The Spouse had his first lumps removed from his leg.<br />(((hugs)))Jaynehttps://www.blogger.com/profile/13887495757366973130noreply@blogger.comtag:blogger.com,1999:blog-14131376.post-76174813332607023042009-05-31T01:44:44.118+10:002009-05-31T01:44:44.118+10:00I found your blog on google alerts and wanted to t...I found your blog on google alerts and wanted to tell you thank you for sharing your story. My almost 4 year old son has been diagnosed (also spontaneous) and I am trying to connect to others and learn as much as I can to help cope and hopefully help him as much as I can. Your boys are cuties! Thanks.jannifergrierhttps://www.blogger.com/profile/11078109358742038484noreply@blogger.comtag:blogger.com,1999:blog-14131376.post-44301284190033562852009-05-30T22:06:10.561+10:002009-05-30T22:06:10.561+10:00Thanks for letting us know Trish. And yu may find ...Thanks for letting us know Trish. And yu may find lots more people come forward whom you can share this with too. You are beautiful my friend in any package. Never, ever lose sight of that. I ahve thought it from the first time I cam to your blog. You are strong and a gorgeous woman. Love you and this was a brilliant post!!Lillyhttps://www.blogger.com/profile/14597193176450931002noreply@blogger.comtag:blogger.com,1999:blog-14131376.post-61183981766227628612009-05-30T20:11:18.962+10:002009-05-30T20:11:18.962+10:00SMOOOOOOCH to you for courage. Well done, Trish, t...SMOOOOOOCH to you for courage. Well done, Trish, that was really very informative.<br />I admire you very much.xNataliehttps://www.blogger.com/profile/12919764140075852854noreply@blogger.comtag:blogger.com,1999:blog-14131376.post-13290859651816699402009-05-30T18:05:48.209+10:002009-05-30T18:05:48.209+10:00This is a new disease to me. I wish you all the b...This is a new disease to me. I wish you all the best and send you much love and support. xxxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-14131376.post-14448734781186159612009-05-30T13:27:12.132+10:002009-05-30T13:27:12.132+10:00@Secret Mom - lots of people have never heard of i...@Secret Mom - lots of people have never heard of it - I guess partly because we ourselves don't want to talk about it.<br /><br />@Melody - thanks for taking the time to read it.<br /><br />@Dina - I will check it out I am interested in your novel. Thanks for sharing this too.I have been coming to terms with it for a long time too.<br /><br />@Leanne - thank you for commenting and I am glad I am not the only one who feels 'depressed' about NF and rarely talks about having NF1. Strangely I am the same ...it's easier to (cope with)talk to people online than in real life.<br />I know what you mean about passing it on too (hugs).<br /><br />@Alison - thank you , yes knowledge is power !<br /><br />@Veronica - I know what you mean about talking about talking about 'IT'. I hope some day it is easier for us all ... and that Drs get a better understanding of our disorders.<br /><br />@Mum me - thank you - most of the time it doesn't cause any discomfort but I very careful about making sure they don't put pressure on it.<br /><br />Blossom - thank you for your kind words.♥.Trish.♥ Drumboyshttps://www.blogger.com/profile/13482654455512269065noreply@blogger.comtag:blogger.com,1999:blog-14131376.post-51954380101548900452009-05-30T12:45:44.488+10:002009-05-30T12:45:44.488+10:00how brave of you to write all that.hugs.
Not a ple...how brave of you to write all that.hugs.<br />Not a pleasant thing to deal with.<br />lots of gentle hugsBlossomhttps://www.blogger.com/profile/14410572318941485496noreply@blogger.comtag:blogger.com,1999:blog-14131376.post-55819877846635883072009-05-30T11:39:02.281+10:002009-05-30T11:39:02.281+10:00No I had never heard of it until now. Thanks for s...No I had never heard of it until now. Thanks for sharing your thoughts, and I hope you can get some relief from the lump on your thigh.Mum-mehttps://www.blogger.com/profile/10964065407491663047noreply@blogger.comtag:blogger.com,1999:blog-14131376.post-76982956771780258332009-05-30T10:13:40.146+10:002009-05-30T10:13:40.146+10:00Thankyou for finding the courage to talk about it....Thankyou for finding the courage to talk about it. I had never heard of it either.<br /><br />It's funny, I am able to talk about EDS on my blog, but talking about it in person to anyone other than Mum leaves me a bit cold. Medical professionals need more educating about apparently 'rare' things (like EDS and NF1) that aren't actually rare.<br /><br />((hugs))Veronicahttp://somedaywewillsleep.comnoreply@blogger.comtag:blogger.com,1999:blog-14131376.post-33825772159156691942009-05-30T08:12:07.386+10:002009-05-30T08:12:07.386+10:00Knowledge is power, Trish. Thank you so much for s...Knowledge is power, Trish. Thank you so much for sharing your power with us!Alisonhttps://www.blogger.com/profile/06960199428417526306noreply@blogger.comtag:blogger.com,1999:blog-14131376.post-47660399533964042802009-05-30T07:32:45.148+10:002009-05-30T07:32:45.148+10:00Hi, thanks for sharing. I also have NF and rarely...Hi, thanks for sharing. I also have NF and rarely talk about to anyone,, though it is really noticeable. I am covered in varying sized lumps. <br />It not that I don't want to make it known, its just depressing when I think about it. I have two sons, i have passed this on to, but I was the only one of six kids in my family to have it. Spontaneous they call it. <br />I have found friendship with others online who have this condition rather than seek out others in my area as I can cope better with it then.<br />Hugs from Leanneleany17https://www.blogger.com/profile/01205545973524272080noreply@blogger.comtag:blogger.com,1999:blog-14131376.post-32138319715207617352009-05-30T04:38:58.199+10:002009-05-30T04:38:58.199+10:00I think you were very brave to write that.
I'm so...I think you were very brave to write that.<br /><br />I'm sorry for all you've had to go through.<br /><br />I learned a lot about NF because I wrote a novel about it a few years ago... If you're interested, you can just google "Thirty Cats" and "Dina". I wrote it to help raise awareness for NF. But I don't think I've actually helped much because not many people bought the book. I had it online for awhile, but most people who read it actually had NF and already knew about it. <br /><br /><br />I don't think it's a very depressing book. It's about a teenager who has a mild case, but her father has a much more severe case. She's very self-conscious. The whole book is her trying to come to terms with everything.Dina Roberts https://www.blogger.com/profile/05558115658079175456noreply@blogger.comtag:blogger.com,1999:blog-14131376.post-14920095631514740122009-05-30T04:19:24.772+10:002009-05-30T04:19:24.772+10:00Thanks for sharing all of this with us Trish. I d...Thanks for sharing all of this with us Trish. I didn't know there was such a disease, so thanks for opening my eyes.Melodyhttps://www.blogger.com/profile/05681227038111050561noreply@blogger.comtag:blogger.com,1999:blog-14131376.post-35098911836999322992009-05-30T03:08:27.331+10:002009-05-30T03:08:27.331+10:00I had never heard of this disease. Thanks for shar...I had never heard of this disease. Thanks for sharing.Secret Mom Thoughtshttps://www.blogger.com/profile/18409014239711206789noreply@blogger.com