Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 welcome to the group!!!snowpixie1 <snowpixie1@...> wrote: Hello, I just joined this group. Brief description of me: I was born with goltz syndrome (focal dermal hypoplasia), which is a rare bone and tissue disorder. I was diagnosed with Multiple Sclerosis in December of 2004.Basically, the syndrome I was born with has always been a minor problem (once I finally learned how to avoid bone breaks and haven't had one in 12 years, knock on wood). However, when I was 24, I started to get really sick, 3 years later diagnosed with MS. This illness has been devestating for me and as much I've tried, I just don't seem to fit in any specific group. So, I thought I'd try a group of people who seem to include everyone.Well, that ended up being a much longer hello than I expected ~~~~ *** ~~~ *** ~~~ *** ~~~~The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 Welcome to the group. I'm , I am 25 from southern california. I was diagnosed with transverse myelitis 5 years ago and it went into Multiple sclerosis a few months later. (I also have many other issues including cancer) I totally understand how you feel about not really fitting in anywhere. Its been hard since I am pretty young and most are a lot older and it makes it a totally different set of circumstances to deal with. I am always here if you want to talk Recently Joined > Hello, I just joined this group. > > Brief description of me: I was born with goltz syndrome (focal dermal > hypoplasia), which is a rare bone and tissue disorder. I was diagnosed > with Multiple Sclerosis in December of 2004. > > Basically, the syndrome I was born with has always been a minor problem > (once I finally learned how to avoid bone breaks and haven't had one in > 12 years, knock on wood). However, when I was 24, I started to get > really sick, 3 years later diagnosed with MS. This illness has been > devestating for me and as much I've tried, I just don't seem to fit in > any specific group. So, I thought I'd try a group of people who seem to > include everyone. > > Well, that ended up being a much longer hello than I expected > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Being Sick Community > > > Message Archives-/messages > > Chat:- Scheduled Chats at > /chat > > Bookmarks:- > Add a website URL you have found useful. > /links > > Personal Complaints or problems:- > Please contact a moderator > email: -owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into groups at your convenience and receive no email. > > To modify your subscription settings please visit:- > /join > > To subscribe or unsubscribe please email:- > -subscribe > -unsubscribe > > This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician. > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > When nothing is sure, everything is possible. > > --- Margaret Drabble > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 glad to have you join the group. i joined because my six year old son has cystic fibrosis and asthma and i wanted to talk to people who knew what i was going through. feel free to drop me a line anytime. hope you have a great holiday. evelynsnowpixie1 <snowpixie1@...> wrote: Hello, I just joined this group. Brief description of me: I was born with goltz syndrome (focal dermal hypoplasia), which is a rare bone and tissue disorder. I was diagnosed with Multiple Sclerosis in December of 2004.Basically, the syndrome I was born with has always been a minor problem (once I finally learned how to avoid bone breaks and haven't had one in 12 years, knock on wood). However, when I was 24, I started to get really sick, 3 years later diagnosed with MS. This illness has been devestating for me and as much I've tried, I just don't seem to fit in any specific group. So, I thought I'd try a group of people who seem to include everyone.Well, that ended up being a much longer hello than I expected ~~~~ *** ~~~ *** ~~~ *** ~~~~The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2009 Report Share Posted July 28, 2009 > I just recently joined and was happy to find a group like this. Glad to have you around, Lori. > I have already lost about 50# and plan to lose another 100. Are you following any specific food or exercise plan or just winging it with " eat less, exercise more " ? > I used to be a runner The last time I ran I was probably in high school back in the late 1960's. >and my ultimate goal would be to run again. With a good pair of running shoes you'll be there in no time. Look through the archives at 's posts about training for the Bloomsday race each year and her talking about " wogging " - a combination of walking and jogging she was taught. http://www.wisegeek.com/what-is-wogging.htm It's a lot easier on your joints than straight out running or jogging. Sue in NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2009 Report Share Posted July 29, 2009 I have already lost about 50# and plan to lose another 100. I used to be a runner and my ultimate goal would be to run again. Welcome to the group Lori! I am 42 (on Saturday LOL), single mom of 3 boys (13, 15 and 17 [in Sept]). I've lost 50 lbs not and need to lose another 60-70 Look forward to following your progress. I'm the one Sue mentioned is a wogger LOL!! Hot Deals at Dell on Popular Laptops perfect for Back to School Quote Link to comment Share on other sites More sharing options...
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