Guest guest Posted July 26, 2001 Report Share Posted July 26, 2001 Welcome to all the newbies ! This is a wonderful group. I found them when my husband Brett was dx w/ RP two years ago (although he had symptoms for years). The people in this group have taught me so and have been so supportive. I am curious about Ellen and . Where do you live? Where did you grow up? My husband and his family grew up in Barstow CA and we suspect that the chemical Chromium 6 is what caused cancer and rp in his family. B. in CT At 11:08 PM 7/25/2001 -0000, you wrote: > >DISCLAIMER!! >WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU >------------------------------------------------------------------------ > >There are 25 messages in this issue. > >Topics in this digest: > > 1. Re: lipomas > From: elecurrier79@... > 2. Re: Address List > From: elecurrier79@... > 3. Re: Welcome > From: RCColloran@... > 4. Re: lipomas > From: RCColloran@... > 5. Re: LU > From: Lu1953@... > 6. Re: Re: Ellen > From: elecurrier79@... > 7. Re: (unknown) > From: elecurrier79@... > 8. Re: chat > > 9. Lu, gall bladder > > 10. Re: Welcome to a bunch of new members. > From: elecurrier79@... > 11. Re: I'm saying good bye > From: elecurrier79@... > 12. dawn's burn > > 13. Re: lipomas > From: grandm4@... > 14. Re: Re: Ellen > From: grandm4@... > 15. Re: we need everyone's efforts > From: elecurrier79@... > 16. Re: Welcome to a bunch of new members. > From: elecurrier79@... > 17. Re: lipomas > From: elecurrier79@... > 18. Re: Welcome to a bunch of new members. > From: RCColloran@... > 19. Re: Address List > From: RCColloran@... > 20. Re: lipomas > From: RCColloran@... > 21. Re: dawn's burn > From: RCColloran@... > 22. Re: dawn's burn > From: godave4@... > 23. Re: lipomas > From: grandm4@... > 24. Re: Welcome to a bunch of new members. > From: grandm4@... > 25. Re: we need everyone's efforts-Connie Thanks!!! > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 1 > Date: Wed, 25 Jul 2001 16:13:20 EDT > From: elecurrier79@... >Subject: Re: lipomas > >Dear Lucy, > I'm new to the group and have no idea what lipomas are. Could you >let me know. > >Thanks, > > Ellen > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 2 > Date: Wed, 25 Jul 2001 16:25:24 EDT > From: elecurrier79@... >Subject: Re: Address List > >I would like a copy of the names of those in the group and would like my name >added to the list. my address is: Ellen Currier > 47 boush, St. > Kittery, Me. > 03904 > My tele # is: 2074391636 > My e-mail address is: elecurrier79@... > thanks Ellen > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 3 > Date: Wed, 25 Jul 2001 16:29:57 EDT > From: RCColloran@... >Subject: Re: Welcome > >Hi , so good to see you post... Boy, you sure have had your share of >problems.....So sorry you had to get RP too...Glad you caught it early >though. > >Your family sounds wonderful..... I would love the moose too....how much fun. > > >I am C, live in Calif. happily married for 26 years, have 3 daughters >age 26, 23, and 20 and one grandaughter age 4. I have been dx with RP for >about 3 years but think I've had it much longer. I also have fibro, cfids, >chiari malformation(my brain is falling off it's shelf) LOL aortic >insuffientcy (caused from Rp) and Mitral Valve prolapse. I have developed >Cushings syndrom from the prednisone and now have Sorgrens too. Boy, ain't >life grand. LOL Have just found out that I have fatty tumors in my feet and >am hoping that the cortisone injections help....don't want surgery...LOL a >big chicken.. Walking is hard right now, but I am doing alot better than I >was a month ago... I too am on disability.. Have been since 1997. I admire >and look up to all of the ones that still work.... Don't know how they do >it.. I try to keep as busy as possible, but there are days that much doesn't >get done.. > >I'm so glad that you and your sister have found this group. You will soon >see that we are just a big happy family...PLEASE feel free to ask all the >questions you want.. We all learn from them... You and your sister can >probably enlighten us on a lot of things. > >Hope you are having a good day... > >hugs > C > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 4 > Date: Wed, 25 Jul 2001 16:32:48 EDT > From: RCColloran@... >Subject: Re: lipomas > >Ellen, lipomas are fatty tumors.... I just found out I have them in both >feet. They are wrapped around the nerves and muscles.... Chuck just had >abdominal surgery to remove them from his abdomin. We were wondering if >there was any connection with these and RP. If they are in my feet, I was >wondering if they were any where else. LOL Guess time will tell. > >Sorry for writing a book. > >So glad that you and are part of the group... Can't wait to know you >better > >hugs > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 5 > Date: Wed, 25 Jul 2001 16:45:23 EDT > From: Lu1953@... >Subject: Re: LU > >In a message dated 07/25/2001 7:26:18 AM Central Daylight Time, >sherry_24230_2000@... writes: > > >> Lu , You hang in there . Don't let anything get you down , we need you to >> much . Sherry >> > >Thank you Sherry, I'm not going anywhere. Just hope the gallbladder quits >hurting. >Lu > > >[This message contained attachments] > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 6 > Date: Wed, 25 Jul 2001 16:52:58 EDT > From: elecurrier79@... >Subject: Re: Re: Ellen > >Dear , > Thankyou for your post. I've had RP since 1885, or thats when I >started showing symptoms of RP. Before that they told me I had Lupus when I >was 19 yrs. old. This dx bounced around for a few years till it was decided >that I didn't have lupus. Then the docs just said that I had an auto-immune >disease of unknown origin. This " unknown " period overlapped the time I was >showing signs of RP. RP was even mentioned several times but never seriously >considered. I had a biopsy of my ear about 6 yrs ago when I received a >definite dx. > Unfortunately alot of destruction has taken place because of the >long period of time it took to get a dx. > I put my trust in God and take life day by day and try to do the >best I can. > >take care, > > Ellen > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 7 > Date: Wed, 25 Jul 2001 17:02:07 EDT > From: elecurrier79@... >Subject: Re: (unknown) > >Dear Dawn, > I'm a new member so you may be surprised to hear from me. Call your >doc this could develop into something serious. The pred and metho inhibit the >immune system so while that helps the RP it can make your bodies ability to >fight infection and disease weaker. you my not be able to heal normally. > Let me know how you make out,I'm praying for you, > > Ellen > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 8 > Date: Wed, 25 Jul 2001 14:26:15 -0700 (PDT) > >Subject: Re: chat > > > , Yes Shirley is a night owl , and I'm an early bird early to bed early to rise .But that might be changing in a couple of weeks . Bobby will be working out of town for four days ,then home late on Thursday . When I don't have to get up at 5:00 i stay up late also . Maybe we can all get on there . I need to go to no mail tomarrow night . We are taking to Dollywood for the weekend . Let me know how to do it okay. Love Sherry > RCColloran@... wrote: In a message dated 7/25/01 6:26:15 AM Pacific Daylight Time, >sherry_24230_2000@... writes: > ><< I was just wondering if anyone was going to be at chat today ? The >last couple of times I have been there no one is online . > Sherry > >> >Sherry.. I just talked to Dawn.... Sorry I missed chat... I was out watering >my plants and time got away from me... When I came back and signed on >everyone was gone. Just my luck. LOL Sorry I missed everyone... I really >need to do something with this brain of mine...LOL > >Hope you are having a good day.. Had a nice chat with Shirley and Glenda >last nite on MSN.. We laughed sooo much and had a great time... Think I've >finally found another night owl (Shirley) Usually up by my self...LOL > >Hope to catch you later. > >hugs > > >DISCLAIMER!! >WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi all--just wanted to write and say that thus far surgery has gone well. I had on open rny on monday. I will admit for about the first 36 hours i thought i may have made a bad decision. I am a pretty tough cracker---but ill admit that it hurt pretty bad. After bad 36 hours though things started getting better. I am hoping to go home tomorrow--just wanted to say i look forward to joining you all on the losing side---Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi all--just wanted to write and say that thus far surgery has gone well. I had on open rny on monday. I will admit for about the first 36 hours i thought i may have made a bad decision. I am a pretty tough cracker---but ill admit that it hurt pretty bad. After bad 36 hours though things started getting better. I am hoping to go home tomorrow--just wanted to say i look forward to joining you all on the losing side---Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 MEGAN: Try to look for hidden (and those a little more obvious) carbs and eliminate them. Replace them with protein. When you are closer to goal you can probably slowly begin adding carbs back. BECCA: Do you know what problems are interferring with your sleep? Is it pain? A lot of people sleep in a recliner for a while so as not to lay flat. Worth a try? SOUTHERNANGELSPC: I have seen my surgeon on each and every visit. He takes the time to answer questions and ask a few of his ownl He is VERY interested and very hands on with each of his patients. If I were in your shoes, I would be a little more demanding. This is important and something all pre-ops should ask about before settling on a surgeon. lallshouse: By liquid diet I am assuming you mean FULL liquids. To Candi's list, add cream soups, higher the protein the better. My fav was cream of chicken. I also liked pureed bean soup and found it to be very filling. The eating plan given to me (and whoever said there are as many of those as members on this list) was for 3 small meals a day from the list plus a snack of a protein shake between each meal, beginning with 1/2 cup each for a week to 3/4 cup between meals the next week to 1 cup. My fav is Atkins in the cans.... Convenient, and best tasting to my buds as well as best ratio of protein (20 gms) to sugars (1 gm) per 11 oz can. Pain varies from person to person and is something she should discuss with her surgeon. He needs to know and can either make suggestions or calm her fears. I was making hallway treks as often as possible in the hospital and 4 days post op at home was walking a mile in the morning and a mile in the evening. Again, she should check with her surgeon as to when to swim, workout, etc because again everyone here has been told something different. My surgeon insists on only walking for first 6 weeks while the organs inside heal, then gradually begin resistance exercises. I forget how long before swimming because it was too cold anyways. Your friend should make a list of questions and bring an extra copy so both of them can cover the list together.This way he can combine like concerns with same answer. JESSICA IN MI: Congrats and a big hug. You go Girl Now I would like to address something else all together. I belong to several groups and the top thing that turns me off and sends me unsubscribing is having to wade through soooo many unnecessary repeated posts. It would help when replying that you delete all or part of the message you are replying to, especially the repeated Yahoo tags. Another tag will be added to your message anyways. Now, Ive vented and thanks for listening. Im only a little over two months post op and look forward to learning and adapting to the changes yet come. ~~~Pat~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 MEGAN: Try to look for hidden (and those a little more obvious) carbs and eliminate them. Replace them with protein. When you are closer to goal you can probably slowly begin adding carbs back. BECCA: Do you know what problems are interferring with your sleep? Is it pain? A lot of people sleep in a recliner for a while so as not to lay flat. Worth a try? SOUTHERNANGELSPC: I have seen my surgeon on each and every visit. He takes the time to answer questions and ask a few of his ownl He is VERY interested and very hands on with each of his patients. If I were in your shoes, I would be a little more demanding. This is important and something all pre-ops should ask about before settling on a surgeon. lallshouse: By liquid diet I am assuming you mean FULL liquids. To Candi's list, add cream soups, higher the protein the better. My fav was cream of chicken. I also liked pureed bean soup and found it to be very filling. The eating plan given to me (and whoever said there are as many of those as members on this list) was for 3 small meals a day from the list plus a snack of a protein shake between each meal, beginning with 1/2 cup each for a week to 3/4 cup between meals the next week to 1 cup. My fav is Atkins in the cans.... Convenient, and best tasting to my buds as well as best ratio of protein (20 gms) to sugars (1 gm) per 11 oz can. Pain varies from person to person and is something she should discuss with her surgeon. He needs to know and can either make suggestions or calm her fears. I was making hallway treks as often as possible in the hospital and 4 days post op at home was walking a mile in the morning and a mile in the evening. Again, she should check with her surgeon as to when to swim, workout, etc because again everyone here has been told something different. My surgeon insists on only walking for first 6 weeks while the organs inside heal, then gradually begin resistance exercises. I forget how long before swimming because it was too cold anyways. Your friend should make a list of questions and bring an extra copy so both of them can cover the list together.This way he can combine like concerns with same answer. JESSICA IN MI: Congrats and a big hug. You go Girl Now I would like to address something else all together. I belong to several groups and the top thing that turns me off and sends me unsubscribing is having to wade through soooo many unnecessary repeated posts. It would help when replying that you delete all or part of the message you are replying to, especially the repeated Yahoo tags. Another tag will be added to your message anyways. Now, Ive vented and thanks for listening. Im only a little over two months post op and look forward to learning and adapting to the changes yet come. ~~~Pat~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 No its not pain. Its just not sleeping I am so tired but when I lay down my mind runs for hours. The Dr. has tried 2 sleeping pills and neither one has helped me. BECCA: Do you know what problems are interferring with your sleep? Is it pain? A lot of people sleep in a recliner for a while so as not to lay flat. Worth a try? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 No its not pain. Its just not sleeping I am so tired but when I lay down my mind runs for hours. The Dr. has tried 2 sleeping pills and neither one has helped me. BECCA: Do you know what problems are interferring with your sleep? Is it pain? A lot of people sleep in a recliner for a while so as not to lay flat. Worth a try? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 I use Ambien 10 mg. It's the best i've ever used. And also , have you had the sleep amina test.You might need too , it's help me. I use a c- pap machine at night . it helps 110%. Phyllis > No its not pain. Its just not sleeping I am so tired but when I lay down my > mind runs for hours. > The Dr. has tried 2 sleeping pills and neither one has helped me. > > > BECCA: Do you know what problems are interferring with your sleep? Is it > pain? A lot of people sleep in a recliner for a while so as not to lay flat. > Worth a try? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 I use Ambien 10 mg. It's the best i've ever used. And also , have you had the sleep amina test.You might need too , it's help me. I use a c- pap machine at night . it helps 110%. Phyllis > No its not pain. Its just not sleeping I am so tired but when I lay down my > mind runs for hours. > The Dr. has tried 2 sleeping pills and neither one has helped me. > > > BECCA: Do you know what problems are interferring with your sleep? Is it > pain? A lot of people sleep in a recliner for a while so as not to lay flat. > Worth a try? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Congratulations Cindy!!!! Alice hardestyal hardesty@... Re: Digest Number 1864 Hi all--just wanted to write and say that thus far surgery has gone well. I had on open rny on monday. I will admit for about the first 36 hours i thought i may have made a bad decision. I am a pretty tough cracker---but ill admit that it hurt pretty bad. After bad 36 hours though things started getting better. I am hoping to go home tomorrow--just wanted to say i look forward to joining you all on the losing side---Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Congratulations Cindy!!!! Alice hardestyal hardesty@... Re: Digest Number 1864 Hi all--just wanted to write and say that thus far surgery has gone well. I had on open rny on monday. I will admit for about the first 36 hours i thought i may have made a bad decision. I am a pretty tough cracker---but ill admit that it hurt pretty bad. After bad 36 hours though things started getting better. I am hoping to go home tomorrow--just wanted to say i look forward to joining you all on the losing side---Cindy Quote Link to comment Share on other sites More sharing options...
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