Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 , Hi! Welcome to the group. I'm glad you found us. One of the scariest parts of having PSC is feeling all alone out there in the world and that is one thing you definitely won't have to worry about now that you've found us! I think some others have already mentioned it, but please feel free to ask any questions that you have. As you probably already know, PSC is incredibly different for each patient and there's no standard correct answer to most of our symptoms, etc. However, chances are that if you have a question, someone else on this board will probably have an answer or can at least commiserate with you having been through the same thing. I can't even count how many times members of this group have answered my questions, cheered my spirits or just helped me to have a better day. I don't know if you'd be interested or not, but I also wanted to let you know that in addition to this site, we also have a PSC Facebook site that is dedicated to PSCers in their 20s and 30s and thereabouts. We'd love to have you join. It's a great place for asking questions, giving advice, sharing information and making connections. If you don't already have a Facebook account, it's easy and free to set one up. Just go to www.Facebook.com and follow the prompts. Once there, you can type in PSC Partners in the search box and our group should pop right up. If that doesn't work for some reason, or you want an easier way, just contact me (Sandi Pearlman) and I'll send you a link if you're interested. One last thing, if it's not too overwhelming and you'd like to meet some fellow PSCers face to face and hear about the latest research, talk with some top specialists, etc., we do have our 5th annual PSC Partners conference coming up May 1-3 in Chicago. I can't even stress enough how helpful it can be to sit in a room with a bunch of people who know exactly what you're going through! If you'd like any more info, just let me know. I'm sorry you had to be here, but glad you found us! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Wow ! You are just a resource in it self! I would love to try the facebook site. Just send me the link. I already have a myspace account. Have not tried facebook yet. I am in Seattle area. I wish we had a meet up group here. I totally would go. it is nice to here I am not alone. i so happy to meet others my age that can relate. I hate feeling so crappy. Heck I am only 35 . I should be out dancing with my husband and running in the park with my twins! Thanks for all of every ones posts and loving support. i needed it ! Sending love , laughter, good energy! Namaste', Subject: Re: New to this!/ To: Date: Tuesday, December 30, 2008, 7:25 PM ,Hi! Welcome to the group. I'm glad you found us. One of the scariest parts of having PSC is feeling all alone out there in the world and that is one thing you definitely won't have to worry about now that you've found us! I think some others have already mentioned it, but please feel free to ask any questions that you have. As you probably already know, PSC is incredibly different for each patient and there's no standard correct answer to most of our symptoms, etc. However, chances are that if you have a question, someone else on this board will probably have an answer or can at least commiserate with you having been through the same thing. I can't even count how many times members of this group have answered my questions, cheered my spirits or just helped me to have a better day.I don't know if you'd be interested or not, but I also wanted to let you know that in addition to this site, we also have a PSC Facebook site that is dedicated to PSCers in their 20s and 30s and thereabouts. We'd love to have you join. It's a great place for asking questions, giving advice, sharing information and making connections. If you don't already have a Facebook account, it's easy and free to set one up. Just go to www.Facebook. com and follow the prompts. Once there, you can type in PSC Partners in the search box and our group should pop right up. If that doesn't work for some reason, or you want an easier way, just contact me (Sandi Pearlman) and I'll send you a link if you're interested.One last thing, if it's not too overwhelming and you'd like to meet some fellow PSCers face to face and hear about the latest research, talk with some top specialists, etc., we do have our 5th annual PSC Partners conference coming up May 1-3 in Chicago. I can't even stress enough how helpful it can be to sit in a room with a bunch of people who know exactly what you're going through! If you'd like any more info, just let me know. :)I'm sorry you had to be here, but glad you found us!Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Wow ! You are just a resource in it self! I would love to try the facebook site. Just send me the link. I already have a myspace account. Have not tried facebook yet. I am in Seattle area. I wish we had a meet up group here. I totally would go. it is nice to here I am not alone. i so happy to meet others my age that can relate. I hate feeling so crappy. Heck I am only 35 . I should be out dancing with my husband and running in the park with my twins! Thanks for all of every ones posts and loving support. i needed it ! Sending love , laughter, good energy! Namaste', Subject: Re: New to this!/ To: Date: Tuesday, December 30, 2008, 7:25 PM ,Hi! Welcome to the group. I'm glad you found us. One of the scariest parts of having PSC is feeling all alone out there in the world and that is one thing you definitely won't have to worry about now that you've found us! I think some others have already mentioned it, but please feel free to ask any questions that you have. As you probably already know, PSC is incredibly different for each patient and there's no standard correct answer to most of our symptoms, etc. However, chances are that if you have a question, someone else on this board will probably have an answer or can at least commiserate with you having been through the same thing. I can't even count how many times members of this group have answered my questions, cheered my spirits or just helped me to have a better day.I don't know if you'd be interested or not, but I also wanted to let you know that in addition to this site, we also have a PSC Facebook site that is dedicated to PSCers in their 20s and 30s and thereabouts. We'd love to have you join. It's a great place for asking questions, giving advice, sharing information and making connections. If you don't already have a Facebook account, it's easy and free to set one up. Just go to www.Facebook. com and follow the prompts. Once there, you can type in PSC Partners in the search box and our group should pop right up. If that doesn't work for some reason, or you want an easier way, just contact me (Sandi Pearlman) and I'll send you a link if you're interested.One last thing, if it's not too overwhelming and you'd like to meet some fellow PSCers face to face and hear about the latest research, talk with some top specialists, etc., we do have our 5th annual PSC Partners conference coming up May 1-3 in Chicago. I can't even stress enough how helpful it can be to sit in a room with a bunch of people who know exactly what you're going through! If you'd like any more info, just let me know. :)I'm sorry you had to be here, but glad you found us!Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Wow ! You are just a resource in it self! I would love to try the facebook site. Just send me the link. I already have a myspace account. Have not tried facebook yet. I am in Seattle area. I wish we had a meet up group here. I totally would go. it is nice to here I am not alone. i so happy to meet others my age that can relate. I hate feeling so crappy. Heck I am only 35 . I should be out dancing with my husband and running in the park with my twins! Thanks for all of every ones posts and loving support. i needed it ! Sending love , laughter, good energy! Namaste', Subject: Re: New to this!/ To: Date: Tuesday, December 30, 2008, 7:25 PM ,Hi! Welcome to the group. I'm glad you found us. One of the scariest parts of having PSC is feeling all alone out there in the world and that is one thing you definitely won't have to worry about now that you've found us! I think some others have already mentioned it, but please feel free to ask any questions that you have. As you probably already know, PSC is incredibly different for each patient and there's no standard correct answer to most of our symptoms, etc. However, chances are that if you have a question, someone else on this board will probably have an answer or can at least commiserate with you having been through the same thing. I can't even count how many times members of this group have answered my questions, cheered my spirits or just helped me to have a better day.I don't know if you'd be interested or not, but I also wanted to let you know that in addition to this site, we also have a PSC Facebook site that is dedicated to PSCers in their 20s and 30s and thereabouts. We'd love to have you join. It's a great place for asking questions, giving advice, sharing information and making connections. If you don't already have a Facebook account, it's easy and free to set one up. Just go to www.Facebook. com and follow the prompts. Once there, you can type in PSC Partners in the search box and our group should pop right up. If that doesn't work for some reason, or you want an easier way, just contact me (Sandi Pearlman) and I'll send you a link if you're interested.One last thing, if it's not too overwhelming and you'd like to meet some fellow PSCers face to face and hear about the latest research, talk with some top specialists, etc., we do have our 5th annual PSC Partners conference coming up May 1-3 in Chicago. I can't even stress enough how helpful it can be to sit in a room with a bunch of people who know exactly what you're going through! If you'd like any more info, just let me know. :)I'm sorry you had to be here, but glad you found us!Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 , Hi! I hope your day is going well. I'm sorry it took me a few days to get back to you. It's been one of those exhausting weeks where turning on the computer felt like a Herculean task! In any case, I agree with you, you should be out dancing with your husband and running in the park with your twins! How old are they? (The twins I mean, not the husband!) Unfortunately, without a Facebook account I can't send you the link to our Facebook PSC group. Once you set up your account though, I can hook you right up to it. You'll just need to " friend " me first so I can send the invite. Here are the directions again if you need them: Just go to www.Facebook. com and follow the prompts. Once there, you can type in PSC Partners in the search box and our group should pop right up. If that doesn't work for some reason, or you want an easier way, just contact me (Sandi Pearlman) and I'll send you the link. I'm so glad you found us. It's so nice to not feel all alone with this giant PSC thing hanging over your head, you know? Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 , Hi! I hope your day is going well. I'm sorry it took me a few days to get back to you. It's been one of those exhausting weeks where turning on the computer felt like a Herculean task! In any case, I agree with you, you should be out dancing with your husband and running in the park with your twins! How old are they? (The twins I mean, not the husband!) Unfortunately, without a Facebook account I can't send you the link to our Facebook PSC group. Once you set up your account though, I can hook you right up to it. You'll just need to " friend " me first so I can send the invite. Here are the directions again if you need them: Just go to www.Facebook. com and follow the prompts. Once there, you can type in PSC Partners in the search box and our group should pop right up. If that doesn't work for some reason, or you want an easier way, just contact me (Sandi Pearlman) and I'll send you the link. I'm so glad you found us. It's so nice to not feel all alone with this giant PSC thing hanging over your head, you know? Sandi in VA Quote Link to comment Share on other sites More sharing options...
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