Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 ((((((((((((((sandra)))))))))))))))) i know how things are so frustrating, no offence to this group's owner but i would never let a group owner or non medical person tell us what is correct thing to do. im on iron tablets for life as i don't have enough iron in me same with calcuim. i'm sick of do gooders i'm glad to say this is a great list and great place to vent. i have a boring diet as i'm on a low fat no salt no dairy diet, i have friend who's diet had crohns like me but according to friend never took medication for it well tonight she upset me by saying i couldn't have crohns because my syptoms were totally differnt to her daughter and the hopspital i go to doesn't treat crohns and i'm mentally ill if i think i got crohns hence now she is no longer a friend, what i'm trying to say is don't listen to people who think they know whats right for us. i hope you iron comes down so you can get your treatment love mandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 Hi , years ago my husband had iron overload and when he started getting headaches he would donate blood every four weeks he had a scrip for it and it saved him a trip to the doc's office and somebody got some good out of it. Could you do some thing like that or can you find a book that has the iron levels of all type of foods. His doc had him eating a certain amoumt of foods with iron or the liver will make to much is what he said. My brain is coming home more often LMay With everything I have going on health wise, the biggies on my plate are Hemochromatosis and Liver disease. Hemochromatosis is the reason I cannot start chemo for the liver disease until the iron levels are reduced because chemo won't work with the high levels. I have a pint of blood drawn every three weeks to reduce levels and who knows how long it will take to get the levels down with phlebotomy. My frustration is - - I joined a support group and it's amazing how anyone can just give out wrong and stupid information. I have spent the majority of the evening rereading everything I can on the web about hemochromatosis. I am sooooo glad I have not taken the group owners advice and stuck with what I have read. Both the group owner and my dietician told me not to worry about diet. HA, diet with phlebotomy is about all you can do for the darn disease. Diet is frustrating, no red meat, no vitamin c or k. No alcohol (I never have drank), the only lettuce I can have is iceberg, no shell fish (it can kill me), no walking barefooted on the beach (broken shells can kill me), no smoking. And the endless list goes on. The other group owner told me not to worry about any of it because phlebotomy will take care of everything -- not true. I have been living on chicken (which I am not fond of) and sticking to the diet with the exception of a hamburger on Wednesday. (1st red meat in 9 weeks). I'm so frustrated with all of this. The hassle of driving into town every third Wednesday, always fatigued, craving foods I don't like now that I can't have them. I'm doing everything I am suppose to do with the exception of quitting smoking. (Smoking has something to do with storing iron too). UGHH. Thanks for letting me get this off my chest, I know it's rambling and probably doesn't make sense. This blood disorder has been around for a very long time but the two gene mutations were just discovered in 1996. Needless to say, there is not a lot out there on it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 wow the best info is from a doctor i have some issues with my pititry gland new nothing abbout i asked for info they supplied me with a great deal but if u dont ask they wont profide it for u i know sad right thats how doctors work there is a place called dailystregth.com they have alot of sopport groups advice from medical proffesionals and info i hope this helps and i am sorry if i intruded on ur conversation theresa w take care and i hope you feel better soon myspace.com/s1968pic1964 facebook theresa wells yahoo messenger theresa_wells36 Hi , years ago my husband had iron overload and when he started getting headaches he would donate blood every four weeks he had a scrip for it and it saved him a trip to the doc's office and somebody got some good out of it. Could you do some thing like that or can you find a book that has the iron levels of all type of foods. His doc had him eating a certain amoumt of foods with iron or the liver will make to much is what he said. My brain is coming home more often LMay With everything I have going on health wise, the biggies on my plate are Hemochromatosis and Liver disease. Hemochromatosis is the reason I cannot start chemo for the liver disease until the iron levels are reduced because chemo won't work with the high levels. I have a pint of blood drawn every three weeks to reduce levels and who knows how long it will take to get the levels down with phlebotomy. My frustration is - - I joined a support group and it's amazing how anyone can just give out wrong and stupid information. I have spent the majority of the evening rereading everything I can on the web about hemochromatosis. I am sooooo glad I have not taken the group owners advice and stuck with what I have read. Both the group owner and my dietician told me not to worry about diet. HA, diet with phlebotomy is about all you can do for the darn disease. Diet is frustrating, no red meat, no vitamin c or k. No alcohol (I never have drank), the only lettuce I can have is iceberg, no shell fish (it can kill me), no walking barefooted on the beach (broken shells can kill me), no smoking. And the endless list goes on. The other group owner told me not to worry about any of it because phlebotomy will take care of everything -- not true. I have been living on chicken (which I am not fond of) and sticking to the diet with the exception of a hamburger on Wednesday. (1st red meat in 9 weeks). I'm so frustrated with all of this. The hassle of driving into town every third Wednesday, always fatigued, craving foods I don't like now that I can't have them. I'm doing everything I am suppose to do with the exception of quitting smoking. (Smoking has something to do with storing iron too). UGHH. Thanks for letting me get this off my chest, I know it's rambling and probably doesn't make sense. This blood disorder has been around for a very long time but the two gene mutations were just discovered in 1996. Needless to say, there is not a lot out there on it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 ah , SO tough!! I am ever so glad that you are well informed AND well-disciplined! WHAT a shame that that support group is giving out erroneous info! It's not that 'uplifting' for you when you have to decide whether to correct them and provide that info.... like I said, TOUGH! power to you AND wellness too.... Jean From: Sent: Friday, January 08, 2010 9:13 PM To: BeingSick Subject: frustrated - venting With everything I have going on health wise, the biggies on my plate are Hemochromatosis and Liver disease. Hemochromatosis is the reason I cannot start chemo for the liver disease until the iron levels are reduced because chemo won't work with the high levels. I have a pint of blood drawn every three weeks to reduce levels and who knows how long it will take to get the levels down with phlebotomy. My frustration is - - I joined a support group and it's amazing how anyone can just give out wrong and stupid information. I have spent the majority of the evening rereading everything I can on the web about hemochromatosis. I am sooooo glad I have not taken the group owners advice and stuck with what I have read. Both the group owner and my dietician told me not to worry about diet. HA, diet with phlebotomy is about all you can do for the darn disease. Diet is frustrating, no red meat, no vitamin c or k. No alcohol (I never have drank), the only lettuce I can have is iceberg, no shell fish (it can kill me), no walking barefooted on the beach (broken shells can kill me), no smoking. And the endless list goes on. The other group owner told me not to worry about any of it because phlebotomy will take care of everything -- not true. I have been living on chicken (which I am not fond of) and sticking to the diet with the exception of a hamburger on Wednesday. (1st red meat in 9 weeks). I'm so frustrated with all of this. The hassle of driving into town every third Wednesday, always fatigued, craving foods I don't like now that I can't have them. I'm doing everything I am suppose to do with the exception of quitting smoking. (Smoking has something to do with storing iron too). UGHH.Thanks for letting me get this off my chest, I know it's rambling and probably doesn't make sense. This blood disorder has been around for a very long time but the two gene mutations were just discovered in 1996. Needless to say, there is not a lot out there on it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 shaking my head how CAN folks presume that they know more than your doctors -- and you such a shame You don't think you could educate her? thinking that we don't have all that many friends to start with, and tough to lose any. Jean From: amandanewell06@... Sent: Friday, January 08, 2010 9:43 PM To: BeingSick Subject: Re: frustrated - venting ((((((((((((((sandra)))))))))))))))) i know how things are so frustrating, no offence to this group's owner but i would never let a group owner or non medical person tell us what is correct thing to do. im on iron tablets for life as i don't have enough iron in me same with calcuim. i'm sick of do gooders i'm glad to say this is a great list and great place to vent. i have a boring diet as i'm on a low fat no salt no dairy diet, i have friend who's diet had crohns like me but according to friend never took medication for it well tonight she upset me by saying i couldn't have crohns because my syptoms were totally differnt to her daughter and the hopspital i go to doesn't treat crohns and i'm mentally ill if i think i got crohns hence now she is no longer a friend, what i'm trying to say is don't listen to people who think they know whats right for us. i hope you iron comes down so you can get your treatment love mandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 Yeah, LMay! yes, you sound MUCH more like yourself!! so glad! Jean From: LMay Sent: Friday, January 08, 2010 9:49 PM To: BeingSick Subject: Re: frustrated - venting Hi , years ago my husband had iron overload and when he started getting headaches he would donate blood every four weeks he had a scrip for it and it saved him a trip to the doc's office and somebody got some good out of it. Could you do some thing like that or can you find a book that has the iron levels of all type of foods. His doc had him eating a certain amoumt of foods with iron or the liver will make to much is what he said. My brain is coming home more often LMay On Fri, Jan 8, 2010 at 8:13 PM, <sandraenglegoodman> wrote: With everything I have going on health wise, the biggies on my plate are Hemochromatosis and Liver disease. Hemochromatosis is the reason I cannot start chemo for the liver disease until the iron levels are reduced because chemo won't work with the high levels. I have a pint of blood drawn every three weeks to reduce levels and who knows how long it will take to get the levels down with phlebotomy. My frustration is - - I joined a support group and it's amazing how anyone can just give out wrong and stupid information. I have spent the majority of the evening rereading everything I can on the web about hemochromatosis. I am sooooo glad I have not taken the group owners advice and stuck with what I have read. Both the group owner and my dietician told me not to worry about diet. HA, diet with phlebotomy is about all you can do for the darn disease. Diet is frustrating, no red meat, no vitamin c or k. No alcohol (I never have drank), the only lettuce I can have is iceberg, no shell fish (it can kill me), no walking barefooted on the beach (broken shells can kill me), no smoking. And the endless list goes on. The other group owner told me not to worry about any of it because phlebotomy will take care of everything -- not true. I have been living on chicken (which I am not fond of) and sticking to the diet with the exception of a hamburger on Wednesday. (1st red meat in 9 weeks). I'm so frustrated with all of this. The hassle of driving into town every third Wednesday, always fatigued, craving foods I don't like now that I can't have them. I'm doing everything I am suppose to do with the exception of quitting smoking. (Smoking has something to do with storing iron too). UGHH.Thanks for letting me get this off my chest, I know it's rambling and probably doesn't make sense. This blood disorder has been around for a very long time but the two gene mutations were just discovered in 1996. Needless to say, there is not a lot out there on it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 LMay, Glad you are feeling better. I have Heredity Hemochromatosis. I have two genes C282Y in one of my chromosones which causes me to store too much iron. I do have a prescription from my doctor and I donate blood every third Wednesday until my levels drop to a 33 (I am at 50 now). Then I will have to donate anywhere from 2 to 6 times a year for the rest of my life to keep the levels at 33. The problem with hemochromatosis is not producing too much iron, but storing too much. If a person without HHC eats a hamburger, they store 13% of the iron - I store 45 to 55% of the iron, and of course, the iron stores in vital organs. I wish I were able to donate my blood, but due to liver disease it has to be burned because my blood would be deadly for a sick person. Without the donations (phlebotomy) my liver, pancreas, and heart would fail due to storing too much iron. When I go to the blood center, the lady at the desk asks, " are you here to save a life? " Now, I tell her, yes, mine. I haven't donated since November. I broke my elbow on Dec. 9th the day I was to donate and last Wednesday I went in for donation and they couldn't get the vein in my right arm. I still can't straighten out my left elbow, the arm they use for drawing. So, now I'm 9 weeks behind. I had to go in this past Wednesday for labs for my liver and they had to go into a vein in a very weird place on my right arm. I asked my doctor if I could have a port and she said no, they cause a lot of problems and infections. As long as I have one good arm, I can't have a port. Diet is crazy. I have to look out for iron fortified foods and stay away from them. I can't take vitamins because of the iron and because vitamin c and k makes your body absorb iron. Vegetarian diet minus the greens would be best for me. Fruits if they don't have vitamin c - grapes are okay if I peel the skin. It's not fun. Anyway, I am so glad your brain is coming back and you are feeling better. > > > > > > > With everything I have going on health wise, the biggies on my plate are > > Hemochromatosis and Liver disease. Hemochromatosis is the reason I cannot > > start chemo for the liver disease until the iron levels are reduced because > > chemo won't work with the high levels. I have a pint of blood drawn every > > three weeks to reduce levels and who knows how long it will take to get the > > levels down with phlebotomy. > > > > My frustration is - - I joined a support group and it's amazing how anyone > > can just give out wrong and stupid information. I have spent the majority of > > the evening rereading everything I can on the web about hemochromatosis. I > > am sooooo glad I have not taken the group owners advice and stuck with what > > I have read. Both the group owner and my dietician told me not to worry > > about diet. HA, diet with phlebotomy is about all you can do for the darn > > disease. > > > > Diet is frustrating, no red meat, no vitamin c or k. No alcohol (I never > > have drank), the only lettuce I can have is iceberg, no shell fish (it can > > kill me), no walking barefooted on the beach (broken shells can kill me), no > > smoking. And the endless list goes on. The other group owner told me not to > > worry about any of it because phlebotomy will take care of everything -- not > > true. I have been living on chicken (which I am not fond of) and sticking to > > the diet with the exception of a hamburger on Wednesday. (1st red meat in 9 > > weeks). > > > > I'm so frustrated with all of this. The hassle of driving into town every > > third Wednesday, always fatigued, craving foods I don't like now that I > > can't have them. I'm doing everything I am suppose to do with the exception > > of quitting smoking. (Smoking has something to do with storing iron too). > > UGHH. > > > > Thanks for letting me get this off my chest, I know it's rambling and > > probably doesn't make sense. > > > > > > > > This blood disorder has been around for a very long time but the two gene > > mutations were just discovered in 1996. Needless to say, there is not a lot > > out there on it. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 Hugs to you Mandy. I know what you go through. My son has gone through hell with all the testing and intense pain the past few years. They thought crohns, but it is IBS. And diet is very important too. I just had two feet of colon removed in April. Total collapse. Sorry to hear about your friend. I have a few good words for people like that, but my New Year's resolution was to quit swearing. I have a friend who I stay away from now because he knows everything and really knows nothing. People can be so rude and frustrating. And yes, they do have meds for crohns, it's the same meds they give IBS patients. And, with every disease, not everyone has the same symptoms. Hugs, BeingSick , amandanewell06@... wrote: > > > > ((((((((((((((sandra)))))))))))))))) > > i know how things are so frustrating, no offence to this group's owner but > i would never let a group owner or non medical person tell us what is > correct thing to do. im on iron tablets for life as i don't have enough iron in > me same with calcuim. i'm sick of do gooders i'm glad to say this is a > great list and great place to vent. > i have a boring diet as i'm on a low fat no salt no dairy diet, i have > friend who's diet had crohns like me but according to friend never took > medication for it well tonight she upset me by saying i couldn't have crohns > because my syptoms were totally differnt to her daughter and the hopspital i go > to doesn't treat crohns and i'm mentally ill if i think i got crohns hence > now she is no longer a friend, what i'm trying to say is don't listen to > people who think they know whats right for us. > i hope you iron comes down so you can get your treatment > love > mandy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 ty for the hugs sandra wish i could stay away from this friend she is also a distant cousin and if i don't call her she doesn't get anyone ringing her, so i bite my tongue and change the topic. it still very cold here more snow is forecasted so i will have cabin fever a bit longer, finally a friend's husband collected my prescription now i can have the pain relief without falling asleep. yesterday i fell asleep on the toilet least it wasn't the bath this time. i'm so bored with the tv that computer and knitting have beem a relief. hope that you are feeling better today, i'm here for you if you need to chat love mandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Re: frustrated - venting LMay, Glad you are feeling better. I have Heredity Hemochromatosis. I have two genes C282Y in one of my chromosones which causes me to store too much iron. I do have a prescription from my doctor and I donate blood every third Wednesday until my levels drop to a 33 (I am at 50 now). Then I will have to donate anywhere from 2 to 6 times a year for the rest of my life to keep the levels at 33. The problem with hemochromatosis is not producing too much iron, but storing too much. If a person without HHC eats a hamburger, they store 13% of the iron - I store 45 to 55% of the iron, and of course, the iron stores in vital organs. I wish I were able to donate my blood, but due to liver disease it has to be burned because my blood would be deadly for a sick person. Without the donations (phlebotomy) my liver, pancreas, and heart would fail due to storing too much iron. When I go to the blood center, the lady at the desk asks, " are you here to save a life? " Now, I tell her, yes, mine. I haven't donated Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Hi Thanks for explaining it to me. LMay LMay,Glad you are feeling better.I have Heredity Hemochromatosis. I have two genes C282Y in one of my chromosones which causes me to store too much iron. I do have a prescription from my doctor and I donate blood every third Wednesday until my levels drop to a 33 (I am at 50 now). Then I will have to donate anywhere from 2 to 6 times a year for the rest of my life to keep the levels at 33. The problem with hemochromatosis is not producing too much iron, but storing too much. If a person without HHC eats a hamburger, they store 13% of the iron - I store 45 to 55% of the iron, and of course, the iron stores in vital organs. I wish I were able to donate my blood, but due to liver disease it has to be burned because my blood would be deadly for a sick person. Without the donations (phlebotomy) my liver, pancreas, and heart would fail due to storing too much iron. When I go to the blood center, the lady at the desk asks, " are you here to save a life? " Now, I tell her, yes, mine. I haven't donated since November. I broke my elbow on Dec. 9th the day I was to donate and last Wednesday I went in for donation and they couldn't get the vein in my right arm. I still can't straighten out my left elbow, the arm they use for drawing. So, now I'm 9 weeks behind. I had to go in this past Wednesday for labs for my liver and they had to go into a vein in a very weird place on my right arm. I asked my doctor if I could have a port and she said no, they cause a lot of problems and infections. As long as I have one good arm, I can't have a port. Diet is crazy. I have to look out for iron fortified foods and stay away from them. I can't take vitamins because of the iron and because vitamin c and k makes your body absorb iron. Vegetarian diet minus the greens would be best for me. Fruits if they don't have vitamin c - grapes are okay if I peel the skin. It's not fun. Anyway, I am so glad your brain is coming back and you are feeling better. > > >> >> > With everything I have going on health wise, the biggies on my plate are > > Hemochromatosis and Liver disease. Hemochromatosis is the reason I cannot> > start chemo for the liver disease until the iron levels are reduced because> > chemo won't work with the high levels. I have a pint of blood drawn every > > three weeks to reduce levels and who knows how long it will take to get the> > levels down with phlebotomy.> >> > My frustration is - - I joined a support group and it's amazing how anyone > > can just give out wrong and stupid information. I have spent the majority of> > the evening rereading everything I can on the web about hemochromatosis. I> > am sooooo glad I have not taken the group owners advice and stuck with what > > I have read. Both the group owner and my dietician told me not to worry> > about diet. HA, diet with phlebotomy is about all you can do for the darn> > disease.> >> > Diet is frustrating, no red meat, no vitamin c or k. No alcohol (I never > > have drank), the only lettuce I can have is iceberg, no shell fish (it can> > kill me), no walking barefooted on the beach (broken shells can kill me), no> > smoking. And the endless list goes on. The other group owner told me not to > > worry about any of it because phlebotomy will take care of everything -- not> > true. I have been living on chicken (which I am not fond of) and sticking to> > the diet with the exception of a hamburger on Wednesday. (1st red meat in 9 > > weeks).> >> > I'm so frustrated with all of this. The hassle of driving into town every> > third Wednesday, always fatigued, craving foods I don't like now that I> > can't have them. I'm doing everything I am suppose to do with the exception > > of quitting smoking. (Smoking has something to do with storing iron too).> > UGHH.> >> > Thanks for letting me get this off my chest, I know it's rambling and> > probably doesn't make sense. > >> > > >> > This blood disorder has been around for a very long time but the two gene> > mutations were just discovered in 1996. Needless to say, there is not a lot > > out there on it.> >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 This friend has been a friend for a very long time. He has always been the " voice of authority " and a " know it all " . I tolerated him because he was my friends husband. She passed away last year due to complications from diabitis. Now he is so lonely, and gets into everyones face with his know it all. I just stay away from him because it really annoys me when I know what he is talking about and I know what he says is not true. He knows nothing about hemochromatosis and when he acts like he does, I correct him with the right information. He says, yeah, yeah, like he knows. Ugh, so frustrating. As far as the group, it's an online group. I quit. I am hoping to find a local support group I can attend. I may have to drive into town (Austin) and the only problem with that is fatigue. I am so dog tired when I get off work it is all I can do to pick up my daughter from my parents and get home. There is not that many online groups for hemochromatosis. There was one I applied for and because I did not submit my info quickly enough, I was turned down and told never to apply again. Funny, that group owner's mother died from HHC, you think she would understand. And with all that said, I am so glad I found this group. You all are so caring and supportive. I really look forward to reading posts from all of you. I love y'all. Hugs, > > shaking my head > how CAN folks presume that they know more than your doctors -- and you > > such a shame > You don't think you could educate her? thinking that we don't have all that many friends to start with, and tough to lose any. > Jean > > > From: amandanewell06@... > Sent: Friday, January 08, 2010 9:43 PM > To: BeingSick > Subject: Re: frustrated - venting > > > > > ((((((((((((((sandra)))))))))))))))) > > i know how things are so frustrating, no offence to this group's owner but i would never let a group owner or non medical person tell us what is correct thing to do. im on iron tablets for life as i don't have enough iron in me same with calcuim. i'm sick of do gooders i'm glad to say this is a great list and great place to vent. > i have a boring diet as i'm on a low fat no salt no dairy diet, i have friend who's diet had crohns like me but according to friend never took medication for it well tonight she upset me by saying i couldn't have crohns because my syptoms were totally differnt to her daughter and the hopspital i go to doesn't treat crohns and i'm mentally ill if i think i got crohns hence now she is no longer a friend, what i'm trying to say is don't listen to people who think they know whats right for us. > i hope you iron comes down so you can get your treatment > love > mandy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Have you tried a distraction kit to keep you busy? I have told people in my weight managemnet group to get maybe a shoe box, or a tote bag. Fill it with about 20 different items. Some ideas would be a favorite book or magazine, craft items, puzzle books, basically any thing that you can think of to keep your mind busy.Try that and see if it helps. sue http://health.groups.yahoo.com/group/betterbodybuddies/?yguid=137091429 http://www.peternoone.com. Subject: Re: Re: frustrated - ventingTo: BeingSick Date: Saturday, January 9, 2010, 8:59 AM ty for the hugs sandra wish i could stay away from this friend she is also a distant cousin and if i don't call her she doesn't get anyone ringing her, so i bite my tongue and change the topic. it still very cold here more snow is forecasted so i will have cabin fever a bit longer, finally a friend's husband collected my prescription now i can have the pain relief without falling asleep. yesterday i fell asleep on the toilet least it wasn't the bath this time. i'm so bored with the tv that computer and knitting have beem a relief. hope that you are feeling better today, i'm here for you if you need to chat love mandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Mandy do take care. The news shows the UK getting slammed with bad weather. I am in Texas - north of Austin. We have had two nights of temps in the 20's. Tonight it is suppose to be 14 degrees. I've had to bring my big dogs inside and what a surprise I find when I get up in the morning. I'm happy you finally got your prescription and some relief. > > > > ty for the hugs sandra > wish i could stay away from this friend she is also a distant cousin and > if i don't call her she doesn't get anyone ringing her, so i bite my tongue > and change the topic. > it still very cold here more snow is forecasted so i will have cabin fever > a bit longer, finally a friend's husband collected my prescription now i > can have the pain relief without falling asleep. yesterday i fell asleep on > the toilet least it wasn't the bath this time. > i'm so bored with the tv that computer and knitting have beem a relief. > hope that you are feeling better today, i'm here for you if you need to > chat > love > mandy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 oh dear, I think you are right that it does NOT sound likely. Sure wish he knew how to be supportive... and oh dear re that group that requires immediate response else permanent denial!! WEIRD! I am trying hard to drop my 'Ms Fix-it' mode that seemed earlier the 'way to go and be'. but periodically it sneaks through. Please folks to alert me - and forgive when possible... COLD up here!! A book I ordered has arrived at the bookstore, and I am anxious to get it (written by my best friend in highschool) -- BUT it's SO cold!!! windchill THREE degrees! well, at least above 0... but.. She is still a dancer, and the url for her book still shows that at least to me. apparently set some decades ago, a disillusioned wife goes to the local park for a bit for peace -- and finds a special tree, with its druid.... I'm way dehydrated and MUST get back to 'normal', this way anyway. I'll stay deeply tired and weak & mildly depressed without enough water.... Got my timer set... Jean From: Sent: Saturday, January 09, 2010 10:09 AM To: BeingSick Subject: Re: frustrated - venting This friend has been a friend for a very long time. He has always been the "voice of authority" and a "know it all". I tolerated him because he was my friends husband. She passed away last year due to complications from diabitis. Now he is so lonely, and gets into everyones face with his know it all. I just stay away from him because it really annoys me when I know what he is talking about and I know what he says is not true. He knows nothing about hemochromatosis and when he acts like he does, I correct him with the right information. He says, yeah, yeah, like he knows. Ugh, so frustrating.As far as the group, it's an online group. I quit. I am hoping to find a local support group I can attend. I may have to drive into town (Austin) and the only problem with that is fatigue. I am so dog tired when I get off work it is all I can do to pick up my daughter from my parents and get home. There is not that many online groups for hemochromatosis. There was one I applied for and because I did not submit my info quickly enough, I was turned down and told never to apply again. Funny, that group owner's mother died from HHC, you think she would understand.And with all that said, I am so glad I found this group. You all are so caring and supportive. I really look forward to reading posts from all of you. I love y'all.Hugs,>> shaking my head> how CAN folks presume that they know more than your doctors -- and you > > such a shame> You don't think you could educate her? thinking that we don't have all that many friends to start with, and tough to lose any.> Jean> > > From: amandanewell06@... > Sent: Friday, January 08, 2010 9:43 PM> To: BeingSick > Subject: Re: frustrated - venting> > > > > ((((((((((((((sandra))))))))))))))))> > i know how things are so frustrating, no offence to this group's owner but i would never let a group owner or non medical person tell us what is correct thing to do. im on iron tablets for life as i don't have enough iron in me same with calcuim. i'm sick of do gooders i'm glad to say this is a great list and great place to vent.> i have a boring diet as i'm on a low fat no salt no dairy diet, i have friend who's diet had crohns like me but according to friend never took medication for it well tonight she upset me by saying i couldn't have crohns because my syptoms were totally differnt to her daughter and the hopspital i go to doesn't treat crohns and i'm mentally ill if i think i got crohns hence now she is no longer a friend, what i'm trying to say is don't listen to people who think they know whats right for us.> i hope you iron comes down so you can get your treatment> love> mandy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Try this site: Inspire.com has many groups, may have your type of medical problems, a really great place to rant, rave and inspire. Take care Subject: Re: frustrated - ventingTo: BeingSick Date: Saturday, January 9, 2010, 7:09 AM This friend has been a friend for a very long time. He has always been the "voice of authority" and a "know it all". I tolerated him because he was my friends husband. She passed away last year due to complications from diabitis. Now he is so lonely, and gets into everyones face with his know it all. I just stay away from him because it really annoys me when I know what he is talking about and I know what he says is not true. He knows nothing about hemochromatosis and when he acts like he does, I correct him with the right information. He says, yeah, yeah, like he knows. Ugh, so frustrating. As far as the group, it's an online group. I quit. I am hoping to find a local support group I can attend. I may have to drive into town (Austin) and the only problem with that is fatigue. I am so dog tired when I get off work it is all I can do to pick up my daughter from my parents and get home. There is not that many online groups for hemochromatosis. There was one I applied for and because I did not submit my info quickly enough, I was turned down and told never to apply again. Funny, that group owner's mother died from HHC, you think she would understand. And with all that said, I am so glad I found this group. You all are so caring and supportive. I really look forward to reading posts from all of you. I love y'all. Hugs, > > shaking my head > how CAN folks presume that they know more than your doctors -- and you > > such a shame > You don't think you could educate her? thinking that we don't have all that many friends to start with, and tough to lose any. > Jean > > > From: amandanewell06@ ... > Sent: Friday, January 08, 2010 9:43 PM > To: BeingSick@yahoogrou ps.com > Subject: Re: frustrated - venting > > > > > (((((((((((( ((sandra) ))))))))) )))))) > > i know how things are so frustrating, no offence to this group's owner but i would never let a group owner or non medical person tell us what is correct thing to do. im on iron tablets for life as i don't have enough iron in me same with calcuim. i'm sick of do gooders i'm glad to say this is a great list and great place to vent. > i have a boring diet as i'm on a low fat no salt no dairy diet, i have friend who's diet had crohns like me but according to friend never took medication for it well tonight she upset me by saying i couldn't have crohns because my syptoms were totally differnt to her daughter and the hopspital i go to doesn't treat crohns and i'm mentally ill if i think i got crohns hence now she is no longer a friend, what i'm trying to say is don't listen to people who think they know whats right for us. > i hope you iron comes down so you can get your treatment > love > mandy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 he sounds like my ex husband. The last time I heard, he was on his third wife. Sue http://health.groups.yahoo.com/group/betterbodybuddies/?yguid=137091429 http://www.peternoone.com. From: <sandraenglegoodman@ yahoo.com>Subject: Re: frustrated - ventingTo: BeingSick@yahoogrou ps.comDate: Saturday, January 9, 2010, 7:09 AM This friend has been a friend for a very long time. He has always been the "voice of authority" and a "know it all". I tolerated him because he was my friends husband. She passed away last year due to complications from diabitis. Now he is so lonely, and gets into everyones face with his know it all. I just stay away from him because it really annoys me when I know what he is talking about and I know what he says is not true. He knows nothing about hemochromatosis and when he acts like he does, I correct him with the right information. He says, yeah, yeah, like he knows. Ugh, so frustrating.As far as the group, it's an online group. I quit. I am hoping to find a local support group I can attend. I may have to drive into town (Austin) and the only problem with that is fatigue. I am so dog tired when I get off work it is all I can do to pick up my daughter from my parents and get home. There is not that many online groups for hemochromatosis. There was one I applied for and because I did not submit my info quickly enough, I was turned down and told never to apply again. Funny, that group owner's mother died from HHC, you think she would understand.And with all that said, I am so glad I found this group. You all are so caring and supportive. I really look forward to reading posts from all of you. I love y'all.Hugs,>> shaking my head> how CAN folks presume that they know more than your doctors -- and you > > such a shame> You don't think you could educate her? thinking that we don't have all that many friends to start with, and tough to lose any.> Jean> > > From: amandanewell06@ ... > Sent: Friday, January 08, 2010 9:43 PM> To: BeingSick@yahoogrou ps.com > Subject: Re: frustrated - venting> > > > > (((((((((((( ((sandra) ))))))))) ))))))> > i know how things are so frustrating, no offence to this group's owner but i would never let a group owner or non medical person tell us what is correct thing to do. im on iron tablets for life as i don't have enough iron in me same with calcuim. i'm sick of do gooders i'm glad to say this is a great list and great place to vent.> i have a boring diet as i'm on a low fat no salt no dairy diet, i have friend who's diet had crohns like me but according to friend never took medication for it well tonight she upset me by saying i couldn't have crohns because my syptoms were totally differnt to her daughter and the hopspital i go to doesn't treat crohns and i'm mentally ill if i think i got crohns hence now she is no longer a friend, what i'm trying to say is don't listen to people who think they know whats right for us.> i hope you iron comes down so you can get your treatment> love> mandy> Quote Link to comment Share on other sites More sharing options...
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