Guest guest Posted November 11, 1998 Report Share Posted November 11, 1998 I would email you direct but I get those I send that way BACK 90% of the time!! I DO belong to the Pain Foundation and also the National Vulvodynia ass'n. Both are very helpful.. The Pain Foundation seems a little more personal, I think and one can reach Ms. Fount who started it, while the other is so big, you don'tg et much personal attention. I also belong to the IC assn. and NOW, it seems these things seem to go together & are called a syndrome..I have had IC for 57 years but the Vv and Fibro, IBS, CFS, etc. only a few years.PLENTY to keep me in a tissie ALL the time..along wih other things NOT related,I THINK! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 1999 Report Share Posted February 3, 1999 Jeanette, Here is the address for the vulvar pain forum. vulvarpainforum@... I think if you write to that list they can tell you how to join. If not, post a message to our group because alot of the people there are on both lists and they can probably tell you how to join. Beckie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 1999 Report Share Posted February 5, 1999 This is to everyone: I am having the worst time getting rid of bladder infections. I normally have IC constantly meaning negative cultures. Now they are all coming back positive for a year now. This isn't doing my CFS or my VV any good at all. Grrrr. My Urologist can't find anything wrong, my gyno can't either. It started by resuming sex after so long not having any. He's gone and the infections are still here. Has anyone gone through this? Any hints on how to stop the madness? I was just beginning my calcium citrate and was getting ready to take my Estrace, but now I'll wait until the infection clears. Any feedback would so grateful. Thanks!!!! Lainey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 1999 Report Share Posted February 5, 1999 This is to everyone: I am having the worst time getting rid of bladder infections. I normally have IC constantly meaning negative cultures. Now they are all coming back positive for a year now. This isn't doing my CFS or my VV any good at all. Grrrr. My Urologist can't find anything wrong, my gyno can't either. It started by resuming sex after so long not having any. He's gone and the infections are still here. Has anyone gone through this? Any hints on how to stop the madness? I was just beginning my calcium citrate and was getting ready to take my Estrace, but now I'll wait until the infection clears. Any feedback would so grateful. Thanks!!!! Lainey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 , Your dreams are within your reach. That man does exist for you. I found my husband who is all that and more for me. When people ask me what first attracted me to him I always reply with, " I fell in love with his heart " and that is the honest truth. I married at 33, he was 33 also and I think that I had figured out what I needed in a life long partner by then. I just vowed to be myself and not compromise who and what I was for a man and it all fell into place. I found someone who had the same morals, values and love of family that I had. It didn't hurt that he was attractive too! Best of luck. Michele --- " n.singer " wrote: > > > Hi- > Has anyone out there who is vegetarian been on the > yeast diet? Just > wondering since you are suppose to eat meat veg and > eggs and I don't eat > meat or eggs really. I just don't like the taste of > eggs though I use > them in baking and stuff. Though I have been to > Dr. and he did > not say I have yeast I am just starting to wonder. > I am not getting > better with his treatment plan and since I won't be > home since July > can't really do anything about it except maybe > change my diet. I eat a > lot of fruit and veg and pasta though I have been > cutting back on the > bread and pasta lately. So, if any of you have done > the cook's diet and > are veggie can you let me know if he was feasible to > do. > > The other thing is that I have been writing a bit > lately to clear my > head and think about what I am looking for in my > partner and life. I > have not gotten far but I thought I would share it > with you ladies. If > you don't want to read it just scroll through it and > I apologize to > those who don't. Sometimes you just need a little > feedback to know if > what you want and desire is achievable or if you are > just dreaming! > Thanks for listening. > Singer > mailto:n.singer@... > My Dreams > > Most people have simple dreams and I am not any > different from them. > They want to be happy, successful in their desired > field, loved, > cherished for who and what they are and may be, have > a family, really > just simple but essential things. My dreams started > a long time ago > with a memory that never lets me forget. > When I was a little girl I used to play all sorts > of games; some with > my friends, some with my animals, some with my > dolls, some by myself. > This is where the dreams began. You know the ones > about knights in > shining armor and “I want to be… when I grow up”. > My dreams at first > were like every other little girl. I wanted to be a > mommy when I grew > up. I wanted to have a handsome husband who loved > me. I wanted to be a > veterinarian. I wanted to have a big house with all > the animals in the > world. I knew that the world was mine for the > taking. “Everyday life” > got in the way sometimes and the dreams changed and > evolved but they > were basically always the same. Not too grandiose > but still mine to > strive for and challenge myself to achieve. > Now, I sit here at my computer an adult asking > myself what are your > dreams, your wants, your passions. Who are you? > Not just the physical > you in this body at this present time but the whole > you. The spiritual > you who has lived throughout the centuries > intertwined with so many > other souls and destinies. What is it you want to > achieve with this > lifetime and are you achieving it? Why do you > choose these souls to > live out each life with? What are they meant to > teach you and you > them? So many questions with only insight and time > to answer them. > My dreams are to share this life with someone who > can love not just the > physical me but the soul whom has created me. To > love someone as if > they were part of me and yet separate at the same > time. To have someone > that shares the same values, ideals, fantasies, and > yet still challenges > and stimulates my entire being. To love a man who > makes my eyes light > up, my heart miss a beat, my soul dance in the wind. > I want to be able > to actually talk with my partner about the sun and > the moon without > holding back what I am actually thinking and > feeling. I want honesty, > devotion, compassion, trust, faithfulness, > individuality and yet > intertwining with my life. > My dreams for the physical side of love is for it > to be “okay” if there > is no intercourse for the day, week, month…I need a > man who understands > that the pain is not about him but about me. I need > a man to understand > that the pain is real, not imagine, not used as an > excuse to not be > close, but a physical reality of me. I desire a man > who desires me not > only for my physical but also for my spiritual. I > want to connect with a > man through our touch, our looks, our actions > towards one another > whether it be sexual or everyday. I need a man to > be all of these > things and more. A man who loves through his heart > and mind not > through his groin. > > > > ------------------------------------------------------------------------ > Share the wealth! > http://www.ONElist.com > Tell a friend about ONElist's 130,000 free e-mail > communities! > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 , Your dreams are within your reach. That man does exist for you. I found my husband who is all that and more for me. When people ask me what first attracted me to him I always reply with, " I fell in love with his heart " and that is the honest truth. I married at 33, he was 33 also and I think that I had figured out what I needed in a life long partner by then. I just vowed to be myself and not compromise who and what I was for a man and it all fell into place. I found someone who had the same morals, values and love of family that I had. It didn't hurt that he was attractive too! Best of luck. Michele --- " n.singer " wrote: > > > Hi- > Has anyone out there who is vegetarian been on the > yeast diet? Just > wondering since you are suppose to eat meat veg and > eggs and I don't eat > meat or eggs really. I just don't like the taste of > eggs though I use > them in baking and stuff. Though I have been to > Dr. and he did > not say I have yeast I am just starting to wonder. > I am not getting > better with his treatment plan and since I won't be > home since July > can't really do anything about it except maybe > change my diet. I eat a > lot of fruit and veg and pasta though I have been > cutting back on the > bread and pasta lately. So, if any of you have done > the cook's diet and > are veggie can you let me know if he was feasible to > do. > > The other thing is that I have been writing a bit > lately to clear my > head and think about what I am looking for in my > partner and life. I > have not gotten far but I thought I would share it > with you ladies. If > you don't want to read it just scroll through it and > I apologize to > those who don't. Sometimes you just need a little > feedback to know if > what you want and desire is achievable or if you are > just dreaming! > Thanks for listening. > Singer > mailto:n.singer@... > My Dreams > > Most people have simple dreams and I am not any > different from them. > They want to be happy, successful in their desired > field, loved, > cherished for who and what they are and may be, have > a family, really > just simple but essential things. My dreams started > a long time ago > with a memory that never lets me forget. > When I was a little girl I used to play all sorts > of games; some with > my friends, some with my animals, some with my > dolls, some by myself. > This is where the dreams began. You know the ones > about knights in > shining armor and “I want to be… when I grow up”. > My dreams at first > were like every other little girl. I wanted to be a > mommy when I grew > up. I wanted to have a handsome husband who loved > me. I wanted to be a > veterinarian. I wanted to have a big house with all > the animals in the > world. I knew that the world was mine for the > taking. “Everyday life” > got in the way sometimes and the dreams changed and > evolved but they > were basically always the same. Not too grandiose > but still mine to > strive for and challenge myself to achieve. > Now, I sit here at my computer an adult asking > myself what are your > dreams, your wants, your passions. Who are you? > Not just the physical > you in this body at this present time but the whole > you. The spiritual > you who has lived throughout the centuries > intertwined with so many > other souls and destinies. What is it you want to > achieve with this > lifetime and are you achieving it? Why do you > choose these souls to > live out each life with? What are they meant to > teach you and you > them? So many questions with only insight and time > to answer them. > My dreams are to share this life with someone who > can love not just the > physical me but the soul whom has created me. To > love someone as if > they were part of me and yet separate at the same > time. To have someone > that shares the same values, ideals, fantasies, and > yet still challenges > and stimulates my entire being. To love a man who > makes my eyes light > up, my heart miss a beat, my soul dance in the wind. > I want to be able > to actually talk with my partner about the sun and > the moon without > holding back what I am actually thinking and > feeling. I want honesty, > devotion, compassion, trust, faithfulness, > individuality and yet > intertwining with my life. > My dreams for the physical side of love is for it > to be “okay” if there > is no intercourse for the day, week, month…I need a > man who understands > that the pain is not about him but about me. I need > a man to understand > that the pain is real, not imagine, not used as an > excuse to not be > close, but a physical reality of me. I desire a man > who desires me not > only for my physical but also for my spiritual. I > want to connect with a > man through our touch, our looks, our actions > towards one another > whether it be sexual or everyday. I need a man to > be all of these > things and more. A man who loves through his heart > and mind not > through his groin. > > > > ------------------------------------------------------------------------ > Share the wealth! > http://www.ONElist.com > Tell a friend about ONElist's 130,000 free e-mail > communities! > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 does and she is keeping in touch with Laurie and even going with her on some of her appointments. Peg Question > Does anyone live near Laurie? > Lynn > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2001 Report Share Posted January 8, 2001 ine, You had better watch how much time you spend online. You and your family should be first in your priorities. --- " Fam. Zijlstra " wrote: > Today I had 67 emails.I am very impressed by the way the group > functionates(is this a correct word?) You really are one big > family! Yes, some days we are very busy. If getting too many emails is a problem, you might want to get digests (packets of 25 messages all together) rather than individual emails. Easy to do if you can log into the egroups web site. (The appropriate word would be " functions " , " operates " or even " works " - but don't worry about correctness, your meaning is clear). > One question though,I noticed that all of you are diagnosed > for UC. Isn't there anyone who is suffering from Crohn's > disease? Yes there are. There is a Member Database at the egroup web site, /database/, which has information entries for 140 members (of 222). About 100 made an indication in the IBS column, 10 indicating Crohn's, about 70 UC and 20 no's. > Another question,does anyone have positive experiences with > alternative medicines or do you a kind of diet? I leave that for Patti and Barby to answer they are the group experts. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2001 Report Share Posted January 8, 2001 ine, You had better watch how much time you spend online. You and your family should be first in your priorities. --- " Fam. Zijlstra " wrote: > Today I had 67 emails.I am very impressed by the way the group > functionates(is this a correct word?) You really are one big > family! Yes, some days we are very busy. If getting too many emails is a problem, you might want to get digests (packets of 25 messages all together) rather than individual emails. Easy to do if you can log into the egroups web site. (The appropriate word would be " functions " , " operates " or even " works " - but don't worry about correctness, your meaning is clear). > One question though,I noticed that all of you are diagnosed > for UC. Isn't there anyone who is suffering from Crohn's > disease? Yes there are. There is a Member Database at the egroup web site, /database/, which has information entries for 140 members (of 222). About 100 made an indication in the IBS column, 10 indicating Crohn's, about 70 UC and 20 no's. > Another question,does anyone have positive experiences with > alternative medicines or do you a kind of diet? I leave that for Patti and Barby to answer they are the group experts. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 Hi ine, I've found the best way to read the emails is from the website /post/ You can set it up so you can read them from there and you can see all the subject lines and read and reply to whichever ones you like. I like it too, because I can read them from work as well. They thought my husband, Ed, had Crohn's disease for many years, until they finally confirmed it was indeed UC when he had part of his colon removed in 1997. Some people here, including my husband, try alternative medicines, but, with Dr.s supervision. Ed tried SAM-E for a while, but, because the cost is so high, and because he didn't see any big improvements, he stopped taking it. As far as diet, Ed seems to do well with bland foods, baked chicken, fish, rice, string beans. He stays away from dairy products and high-fat foods. If he has a lot of carbohydrates he doesn't feel well (potatoes, etc). But everyone is different! Good luck, Gracie and Ed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 Hi ine, I've found the best way to read the emails is from the website /post/ You can set it up so you can read them from there and you can see all the subject lines and read and reply to whichever ones you like. I like it too, because I can read them from work as well. They thought my husband, Ed, had Crohn's disease for many years, until they finally confirmed it was indeed UC when he had part of his colon removed in 1997. Some people here, including my husband, try alternative medicines, but, with Dr.s supervision. Ed tried SAM-E for a while, but, because the cost is so high, and because he didn't see any big improvements, he stopped taking it. As far as diet, Ed seems to do well with bland foods, baked chicken, fish, rice, string beans. He stays away from dairy products and high-fat foods. If he has a lot of carbohydrates he doesn't feel well (potatoes, etc). But everyone is different! Good luck, Gracie and Ed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 Hi ine, I've found the best way to read the emails is from the website /post/ You can set it up so you can read them from there and you can see all the subject lines and read and reply to whichever ones you like. I like it too, because I can read them from work as well. They thought my husband, Ed, had Crohn's disease for many years, until they finally confirmed it was indeed UC when he had part of his colon removed in 1997. Some people here, including my husband, try alternative medicines, but, with Dr.s supervision. Ed tried SAM-E for a while, but, because the cost is so high, and because he didn't see any big improvements, he stopped taking it. As far as diet, Ed seems to do well with bland foods, baked chicken, fish, rice, string beans. He stays away from dairy products and high-fat foods. If he has a lot of carbohydrates he doesn't feel well (potatoes, etc). But everyone is different! Good luck, Gracie and Ed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 > > > Another question,does anyone have positive experiences with > > alternative medicines or do you a kind of diet? > I leave that for Patti and Barby to answer they are the group experts. > Hmmm - I think maybe you mean Barb. Right this minute I don't feel like an expert on anything (after dealing with a somewhat - ok downright rebellious 18yo son). Barby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 > > > Another question,does anyone have positive experiences with > > alternative medicines or do you a kind of diet? > I leave that for Patti and Barby to answer they are the group experts. > Hmmm - I think maybe you mean Barb. Right this minute I don't feel like an expert on anything (after dealing with a somewhat - ok downright rebellious 18yo son). Barby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 > > > Another question,does anyone have positive experiences with > > alternative medicines or do you a kind of diet? > I leave that for Patti and Barby to answer they are the group experts. > Hmmm - I think maybe you mean Barb. Right this minute I don't feel like an expert on anything (after dealing with a somewhat - ok downright rebellious 18yo son). Barby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2001 Report Share Posted January 12, 2001 Another question,does anyone have positive experiences with alternative medicines or do you a kind of diet? Are there some kind of food you better can't take anymore? ine I usually don't answer questions because I am far from experienced BUT I found your question at the least intriguing.... I was diagnosed in "99" I started out in the emergency room on antibiotics and pain relievers. After my gallbladder was removed and my ducts opened I was put on Actigal. I stopped taking my actigal because my impression is that it took my appetite way and made me feel like I had the flu. A few months later my labs were coming back normal. Three months after that another set of labs came back normal so my doctor agreed to allow me to stop them. I don't drink any alcohol at all including beer or wine. I don't take Tylenol or any over the counter meds unless nothing else works i.e.. nap bath whatever. I stay away from strong odors like paint or cleaners. I drink more water I take supplements and eat a well balanced diet. I am not that disciplined where I don't eat pizza burgers, etc., etc. I still do I just have changed my lifestyle a little. I try to practice Yoga and try to stay calm and relaxed. My test have come back for the first time in about 4 or 5 years perfectly normal. I do not go around advocating vitamins, diet and mental awareness as an alternative to any prescribed medications. I personally have done well you may be in a different stage or progressing, which stopping any meds could be dangerous or at least a health risk. I also want to say listen to your body it knows better than most if something isn't right don't ignore it. Tricia dx 08/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2001 Report Share Posted January 12, 2001 Another question,does anyone have positive experiences with alternative medicines or do you a kind of diet? Are there some kind of food you better can't take anymore? ine I usually don't answer questions because I am far from experienced BUT I found your question at the least intriguing.... I was diagnosed in "99" I started out in the emergency room on antibiotics and pain relievers. After my gallbladder was removed and my ducts opened I was put on Actigal. I stopped taking my actigal because my impression is that it took my appetite way and made me feel like I had the flu. A few months later my labs were coming back normal. Three months after that another set of labs came back normal so my doctor agreed to allow me to stop them. I don't drink any alcohol at all including beer or wine. I don't take Tylenol or any over the counter meds unless nothing else works i.e.. nap bath whatever. I stay away from strong odors like paint or cleaners. I drink more water I take supplements and eat a well balanced diet. I am not that disciplined where I don't eat pizza burgers, etc., etc. I still do I just have changed my lifestyle a little. I try to practice Yoga and try to stay calm and relaxed. My test have come back for the first time in about 4 or 5 years perfectly normal. I do not go around advocating vitamins, diet and mental awareness as an alternative to any prescribed medications. I personally have done well you may be in a different stage or progressing, which stopping any meds could be dangerous or at least a health risk. I also want to say listen to your body it knows better than most if something isn't right don't ignore it. Tricia dx 08/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2001 Report Share Posted March 13, 2001 Greetings group...... I try to remember to take my tester with me when I go to the Dr.... and while they got blood coming out of my finger, I run a drop through my personal tester and compare the readings. It is sort of a 'poor mans' calibration test. They check theirs every week, and mine seems to track the Dr's within 18 points, always higher. Dr Tom WB8MCS trichert@... Strange how the Night Moves, with autumn closing in....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2001 Report Share Posted March 13, 2001 << When your Monitor reads 145 is that a true reading. I just came from the doctor, one who was on call for my reg. doctor, and he looked at my chart and asked what kind of medication I was on. I am not. The last test I had was a fasting of 199 but when I took my BG before I went it read 150. He told me that monitor's read about 20 lower then one that you take at the Lab. I have been fighting with trying to control my Blood Sugar for 5 years with diet. This is not working. I can't seem to get a handle on it. Some time I am really good and then off I go. I hate to start on Medication but I think I don't have much of a choice. Also how much of an affect does genetics have to do with having diabetes? >> Hi Pat, Usually home meters read lower than lab results. I take my meter with me occasionally to the lab and test right after they take the blood sample, so I can compare the results and get an indication of how far apart they will be. If you can't control your diabetes with diet and exercise alone, then you need to go on medication - having high BGs consistently mean you are much more likely to develop complications like neuropathy, retinopathy, kidney disease. These days most people seem to start out with one of the drugs that treat insulin resistance, like Glucophage, Actos or Avandia. Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2001 Report Share Posted March 13, 2001 Hi, > Also how much of an affect does genetics have to do > with having diabetes? >> > From what my Dr. said, it is one of the first causes with obesity (poor nutrition) and stress caused by changes in life ( menaupose or very stressful events). I know I fill all those conditions easily. I am looking forward to know more tonight at the endo conference. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2001 Report Share Posted March 13, 2001 Plenty of people are overweight and stressed out without having diabetes. You have to have the gene that predisposes you. It is most likely the reason you are overweight, not the other way around. Read Protein Power and/or Atkins New Diet Revolution to understand why. Meenie Hi,> Also how much of an affect does genetics have to do> with having diabetes? >>> >From what my Dr. said, it is one of the first causeswith obesity (poor nutrition) and stress caused bychanges in life ( menaupose or very stressful events).I know I fill all those conditions easily. I am looking forward to know more tonight at the endoconference.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2010 Report Share Posted August 28, 2010 i have been on here for awhile and never posted anything. but now i have this new pain that has been going on now for 5 weeks. in my right leg from my hip down to ankle. their is alot of pain like when i sat down. and sometimes when i go to stand up. it feels like my muscles are not wanting to stretch out. and it hurts so bad that most times i let out a scream or i start to cry. i was just wondering if anyone else had this. thank you. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.