Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 In a message dated 7/1/2006 10:12:16 AM Pacific Standard Time, redjaxjm@... writes: Riba with some fat as that helps it to work better i didnt know that..thanks geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 I know this was for Robin, but, I took it to heart too.. I notice the worse days for me are the day I take my shot and the day after. I was so "N" last night, I managed to have a few bites of steak and potato, but then needed a zophran after. I hate feeling that way, since I have a major phobia of vomiting. I havent done that yet, thank God. I do need more fluids too. I bought some fresh fruits from the flea market today. I will try and down more water. Thanks again Jax for your advice.. geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 In a message dated 7/1/2006 3:46:40 PM Pacific Standard Time, redjaxjm@... writes: Geri the info I post is for everyone,, and Im so glad if it helped you too! I know what you mean about vomiting,, I cry if I vomit,, I hate it that much.. Im not sure what "N" means,,, I found that the fresh fruits really helped with the nausea too Thats what it means...lol...good I have lots of that, fruit that is..geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 In a message dated 7/1/2006 3:45:22 PM Pacific Standard Time, redjaxjm@... writes: the nurse who held our class was very adamant about that... jax well i never had a class either...geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 Geri the info I post is for everyone,, and Im so glad if it helped you too! I know what you mean about vomiting,, I cry if I vomit,, I hate it that much.. Im not sure what "N" means,,, I found that the fresh fruits really helped with the nausea too,, and drinking either really cold or really hot fluids helped too.. lukewarm fluids really really made me nauseated!!! ACK! really cold gingerale helped a lot,, or ice water with fresh lemon juice helped too. yum,, steak and taters!!! yum,,, hang in there Geri,, you are gonna make it through too!!!! hugs jaxus4heavenbound@... wrote: I know this was for Robin, but, I took it to heart too.. I notice the worse days for me are the day I take my shot and the day after. I was so "N" last night, I managed to have a few bites of steak and potato, but then needed a zophran after. I hate feeling that way, since I have a major phobia of vomiting. I havent done that yet, thank God. I do need more fluids too. I bought some fresh fruits from the flea market today. I will try and down more water. Thanks again Jax for your advice.. geri Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 Yes it does and the protein in the fat helps with nausea... Lots of ppl might have different ideas but I MUST have done something right cuz I was given only a 15% chance of responding to tx and NO CHANCE of SVR,, and I made it.. I was very stringent about making sure I never missed any pills, never missed my shot, and make sure I got enough protein and water... took my liver essentials faithfully and slept almost for a year. I learned that your liver recovers when you are sleeping,, so I did lots of that.. IM surprised that the drug pharmy didnt tell you about the fat with riba.. the nurse who held our class was very adamant about that... jaxus4heavenbound@... wrote: In a message dated 7/1/2006 10:12:16 AM Pacific Standard Time, redjaxjm@... writes: Riba with some fat as that helps it to work better i didnt know that..thanks geri Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 hi lisa-marie i am geri and i am in my 7th week. i have slight damage and mt load is 4 mill. so i would like to be with you and robin as we go threw this together...thanks geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 Hello Robin, I hope you don't mind me stopping by and introducing myself. I read where you are just at the start of your treatment, and I felt compelled to drop you a line. I haven't been online in quite awhile as I have been undergoing some major changes in my life - I just recently made the move from Denver back to Kansas, where I am originally from. And previous to that, I had moved to Denver about a year ago to take care of my dying Mother. I found out I had hep-C in 2002, at that time I had only had it about 15 months, and could give exact day as to when I received it, so I had very little damage and my viral load was extremely low. I immediately wanted to start treatment and rid the virus from my body. At the time I was in Pheonix and was able to use Mayo Hospital. I am geno type 1A and was suppose to do the TX for 48 weeks. I did clear the virus at 11 weeks, and remained clear for over 2 years, however I had to stop treatment at 16 weeks due to moving to Kansas and loosing my insurance. This February I found out that the Hep-C had returned and back with a vengeance. I have had another biopsy and am still in stage 1 but grade 3 now, I feel very blessed that my liver is still in good shape, however my viral load is over 7 million at this point. I must start the treatment as soon as possible, so they tell me. I have actually put it off until just recently and will be starting by no later than mid July. I wanted to tell you that it sounds like you are doing wonderful and taking very good care of yourself, and I know that can be very hard to do when we are on treatment. I had every symptom possible and I think I even found some new ones - LOL, but true. I was so deathly ill, there were many days I couldn't get out of bed. There were times I literally crawled to the bathroom. My body ached and hurt so bad, I remember waking up, when I could sleep, and screaming out in pain grabbing my leggs, saying; "I can't take the pain anymore, I am quitting this crap". That's putting it nicely. LOL My on-line friends helped me through , as I can honestly tell you, I would have NEVER made it through even the 15 weeks without them. They were Angels, saviors, and my rock, without them, I would still be sick to this day, and my liver would have been in much worse shape. Like you, I did manage to get the water down everyday - I was much heavier than, and the amount of treatment is based on weight, as I recall I took 5 riba a day, and 180 of the interferon a week. I remember a couple of times when I didn't get the amount of water down that day or for a few days straight, and I felt even worse - which I never thought could have been possible. I could barely eat and wasn't at all good at forcing myself. I did take the silver vitamins, and I had been taking milk thistle, but my Doctor made me stop taking it while on treatment. He said that it protects the liver so well that it can sometimes prevent the treatment from doing it's job. However, now I hear different - so not sure on that one. If you know any facts on it, let me know if you don't mind. Everything tasted of metal, and I couldn't handle smelling food - expecially while cooking. I will tell you that the first couple months were the worst, and it seemed to get a little easier as time went on. So if you made it through the first week okay - there is a good chance that it will get much easier on you and won't be nearly as bad. I would like to stay in touch with you if you don't mind, as we will be doing treatment at the same time, just a few weeks apart, and maybe we could support one another?? You let me know Anyways - I just wanted to say hello, and let you know that yes you are doing all the right things, pat yourself on the back, and know that I will keep you in my prayers. Stay in touch when you can, I know there will be days that you just won't feel like going on-line and talking about it, at least I did. I got to a point, where I was feeling so crappy, I didn't even want to hear myself complain anymore. In fact I remember thinking, I know my online friends have to tired of hearing me complain. However, now that I have had a chance to be hep free for awhile, I realize that is not true, and that is what we are all here for is to lean on one another. I wish you all the best and may God continue to bless you and yours Love, hugs, prayers, and peace. Marie -- Robin..personal Good Morning Robin Well it certainly does sound and look like you are doing things right! Im glad to hear you are doing your Riba with some fat as that helps it to work better. Listen hon, IF watermelon, hot soup and eggs are what look and taste ok, then eat THAT. The fruit is really good and when your mouth is sore, is easy to eat whereas a more citrusy fruit would burn. Eggs are PERFECT protein and unless your liver is decompensated, YOU really do need the protein.. Protein shakes are really good for getting it down, just make sure that the one you are using has NO IRON in it or very very low iron.Also if you are taking vit C, make sure not to take it at the same time as the protein shake if the shake has added iron as vit C will help with the absorption of iron and that you dont want. I remember just how everything looked and smelled right but very little tasted right, everything has a sort of metally taste.. but the nausea will most definately be easier if you do get enough nutrition.. you can take a multivit as long as it doesnt have iron in it,, I know many who take Centrum Silver because it doesnt have the iron. It does look like you are getting plenty of hydration but you might want to add some electrolyte solution to make sure that you are not washing them away. I used a product called LowOz and Liz uses gatoraid but you could use pedialyte as well. I still have trouble eating more than 2 or 3 small meals and typically I end up with one or two.. I'm 3 1/2 years post tx and still cannot manage much food. Its pretty frustrating because Im still overweight but it IS coming off..... slowly.. Has the Antivert helped? The dizziness is really common on treatment but I hated it myself. I ALWAYS felt woozie and light headed especially if I got up too fast. So you should really take it easy when going from laying to sitting or standing. Get up really slowly so that your body can adjust your blood pressure so you dont pass out and fall or hurt yourself.. Well, it really looks like you ARE doing everything right. The best piece of advice I can give you is to tell you that this treatment while very difficult IS DOABLE. But..and there is always a but, YOU HAVE to pace yourself. Listen to your body, if you need to rest, then rest, if you need to sleep, then sleep, eat when you can, keep going with the fluids and try to keep a positive attitude ( you have that already).. and REMEMBER,, THIS treatment is NOT FOREVER.. What I did was to buy a stuffed animal that was a dragon and EVERY week, when I did my shot, I stuck a hatpin in the dragon. When I started the procrit and neupogen, I stuck it with hatpins with EVERY shot. It was MY way to visualize the progress I was making as I saw the stack of un-used pins growing smaller and smaller and watching the dragon filling up with pins. EVERY time I stuck a pin in it,, I visualized the virus dying.. My granddaughter wanted my dragon so when I was done, I pulled all the pins out and she still has it in her toybox! Well, stay with us hon, ALL of us here want YOU TO SUCCEED.. We will help you in any way we can.. You are doing GREAT!!!!! Hang in there and remember that we are only an email away.. hugs jaxadoptbc <adoptbc@...> wrote: Jackie,The PCP felt it might be Benign Positioning Vertigo or Meniere's Disease; he gave me Antivert. So far, I have the green light to continue with tx---I absolutely do NOT want to stop treatment.I know I'm not getting enough sleep or protein. I'm drinking a gallon of water a day, plus some low-sugar cranberry juice. I'm trying to eat 4-5x a day, small meals, but on my worst days, have only managed 3x. I need to eat more vegetables.I'm taking my pills with peanut butter & crackers or pb on toast. I'm generally eating 2-3 servings of fruit, 1-2 servings of bread, 2 servings of veggies, 1 serving of chicken, some egg whites and cereal with low-fat milk. My taste has changed a lot and nothing except watermelon, hot soup & eggs look good to me right now.This morning, I'm drinking a protein shake and plan to do that in the a.m. and p.m. to combat this exhaustion. Tonight is my 2nd shot.Suggestions, Jackie? Robin> > about my side effects.> > > > I'm not anemic, but my dizziness is constant and extreme, as well > as > > my fatigue. I wrote down how I've been feeling and what little > I've > > been doing.> > > > He's a great doctor/really listens to me. His exact quote was "I'm > > concerned that you were dizzy and fatigued before the treatment > > started and now it's much worse---it could be an underlying > > neurological problem . .> > Dr. S. noticed some nystagmus when doing the eye test with me--> > perhaps it's vertigo or an inner ear problem.> > > > He called my PCP and I'm leaving soon to catch her last appt. Dr. > > Shehab said he's 75% sure he'll be telling me tomorrow to > > temporarily > > stop treatment (depending on what my primary says about additional > > tests).> > > > Dr. Shehab said that stopping tx now temporarily would be much > > better > > than toughing it out and having to stop for good partway through. > > If > > I feel much better after 3-4 days of not treating, then we'll know > > it > > was the treatment and adjust accordingly. He also acknowledged > that > > he knows it's not my depression and said my attitude is very > > positive.> > > > More prayers, please . . .this was tough to hear.> > > > Robin> > > > > > > > > > > > > > Jackie> >> > > > > > > Jackie>Jackie font Times New Roman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 Hello Robin, I hope you don't mind me stopping by and introducing myself. I read where you are just at the start of your treatment, and I felt compelled to drop you a line. I haven't been online in quite awhile as I have been undergoing some major changes in my life - I just recently made the move from Denver back to Kansas, where I am originally from. And previous to that, I had moved to Denver about a year ago to take care of my dying Mother. I found out I had hep-C in 2002, at that time I had only had it about 15 months, and could give exact day as to when I received it, so I had very little damage and my viral load was extremely low. I immediately wanted to start treatment and rid the virus from my body. At the time I was in Pheonix and was able to use Mayo Hospital. I am geno type 1A and was suppose to do the TX for 48 weeks. I did clear the virus at 11 weeks, and remained clear for over 2 years, however I had to stop treatment at 16 weeks due to moving to Kansas and loosing my insurance. This February I found out that the Hep-C had returned and back with a vengeance. I have had another biopsy and am still in stage 1 but grade 3 now, I feel very blessed that my liver is still in good shape, however my viral load is over 7 million at this point. I must start the treatment as soon as possible, so they tell me. I have actually put it off until just recently and will be starting by no later than mid July. I wanted to tell you that it sounds like you are doing wonderful and taking very good care of yourself, and I know that can be very hard to do when we are on treatment. I had every symptom possible and I think I even found some new ones - LOL, but true. I was so deathly ill, there were many days I couldn't get out of bed. There were times I literally crawled to the bathroom. My body ached and hurt so bad, I remember waking up, when I could sleep, and screaming out in pain grabbing my leggs, saying; "I can't take the pain anymore, I am quitting this crap". That's putting it nicely. LOL My on-line friends helped me through , as I can honestly tell you, I would have NEVER made it through even the 15 weeks without them. They were Angels, saviors, and my rock, without them, I would still be sick to this day, and my liver would have been in much worse shape. Like you, I did manage to get the water down everyday - I was much heavier than, and the amount of treatment is based on weight, as I recall I took 5 riba a day, and 180 of the interferon a week. I remember a couple of times when I didn't get the amount of water down that day or for a few days straight, and I felt even worse - which I never thought could have been possible. I could barely eat and wasn't at all good at forcing myself. I did take the silver vitamins, and I had been taking milk thistle, but my Doctor made me stop taking it while on treatment. He said that it protects the liver so well that it can sometimes prevent the treatment from doing it's job. However, now I hear different - so not sure on that one. If you know any facts on it, let me know if you don't mind. Everything tasted of metal, and I couldn't handle smelling food - expecially while cooking. I will tell you that the first couple months were the worst, and it seemed to get a little easier as time went on. So if you made it through the first week okay - there is a good chance that it will get much easier on you and won't be nearly as bad. I would like to stay in touch with you if you don't mind, as we will be doing treatment at the same time, just a few weeks apart, and maybe we could support one another?? You let me know Anyways - I just wanted to say hello, and let you know that yes you are doing all the right things, pat yourself on the back, and know that I will keep you in my prayers. Stay in touch when you can, I know there will be days that you just won't feel like going on-line and talking about it, at least I did. I got to a point, where I was feeling so crappy, I didn't even want to hear myself complain anymore. In fact I remember thinking, I know my online friends have to tired of hearing me complain. However, now that I have had a chance to be hep free for awhile, I realize that is not true, and that is what we are all here for is to lean on one another. I wish you all the best and may God continue to bless you and yours Love, hugs, prayers, and peace. Marie -- Robin..personal Good Morning Robin Well it certainly does sound and look like you are doing things right! Im glad to hear you are doing your Riba with some fat as that helps it to work better. Listen hon, IF watermelon, hot soup and eggs are what look and taste ok, then eat THAT. The fruit is really good and when your mouth is sore, is easy to eat whereas a more citrusy fruit would burn. Eggs are PERFECT protein and unless your liver is decompensated, YOU really do need the protein.. Protein shakes are really good for getting it down, just make sure that the one you are using has NO IRON in it or very very low iron.Also if you are taking vit C, make sure not to take it at the same time as the protein shake if the shake has added iron as vit C will help with the absorption of iron and that you dont want. I remember just how everything looked and smelled right but very little tasted right, everything has a sort of metally taste.. but the nausea will most definately be easier if you do get enough nutrition.. you can take a multivit as long as it doesnt have iron in it,, I know many who take Centrum Silver because it doesnt have the iron. It does look like you are getting plenty of hydration but you might want to add some electrolyte solution to make sure that you are not washing them away. I used a product called LowOz and Liz uses gatoraid but you could use pedialyte as well. I still have trouble eating more than 2 or 3 small meals and typically I end up with one or two.. I'm 3 1/2 years post tx and still cannot manage much food. Its pretty frustrating because Im still overweight but it IS coming off..... slowly.. Has the Antivert helped? The dizziness is really common on treatment but I hated it myself. I ALWAYS felt woozie and light headed especially if I got up too fast. So you should really take it easy when going from laying to sitting or standing. Get up really slowly so that your body can adjust your blood pressure so you dont pass out and fall or hurt yourself.. Well, it really looks like you ARE doing everything right. The best piece of advice I can give you is to tell you that this treatment while very difficult IS DOABLE. But..and there is always a but, YOU HAVE to pace yourself. Listen to your body, if you need to rest, then rest, if you need to sleep, then sleep, eat when you can, keep going with the fluids and try to keep a positive attitude ( you have that already).. and REMEMBER,, THIS treatment is NOT FOREVER.. What I did was to buy a stuffed animal that was a dragon and EVERY week, when I did my shot, I stuck a hatpin in the dragon. When I started the procrit and neupogen, I stuck it with hatpins with EVERY shot. It was MY way to visualize the progress I was making as I saw the stack of un-used pins growing smaller and smaller and watching the dragon filling up with pins. EVERY time I stuck a pin in it,, I visualized the virus dying.. My granddaughter wanted my dragon so when I was done, I pulled all the pins out and she still has it in her toybox! Well, stay with us hon, ALL of us here want YOU TO SUCCEED.. We will help you in any way we can.. You are doing GREAT!!!!! Hang in there and remember that we are only an email away.. hugs jaxadoptbc <adoptbc@...> wrote: Jackie,The PCP felt it might be Benign Positioning Vertigo or Meniere's Disease; he gave me Antivert. So far, I have the green light to continue with tx---I absolutely do NOT want to stop treatment.I know I'm not getting enough sleep or protein. I'm drinking a gallon of water a day, plus some low-sugar cranberry juice. I'm trying to eat 4-5x a day, small meals, but on my worst days, have only managed 3x. I need to eat more vegetables.I'm taking my pills with peanut butter & crackers or pb on toast. I'm generally eating 2-3 servings of fruit, 1-2 servings of bread, 2 servings of veggies, 1 serving of chicken, some egg whites and cereal with low-fat milk. My taste has changed a lot and nothing except watermelon, hot soup & eggs look good to me right now.This morning, I'm drinking a protein shake and plan to do that in the a.m. and p.m. to combat this exhaustion. Tonight is my 2nd shot.Suggestions, Jackie? Robin> > about my side effects.> > > > I'm not anemic, but my dizziness is constant and extreme, as well > as > > my fatigue. I wrote down how I've been feeling and what little > I've > > been doing.> > > > He's a great doctor/really listens to me. His exact quote was "I'm > > concerned that you were dizzy and fatigued before the treatment > > started and now it's much worse---it could be an underlying > > neurological problem . .> > Dr. S. noticed some nystagmus when doing the eye test with me--> > perhaps it's vertigo or an inner ear problem.> > > > He called my PCP and I'm leaving soon to catch her last appt. Dr. > > Shehab said he's 75% sure he'll be telling me tomorrow to > > temporarily > > stop treatment (depending on what my primary says about additional > > tests).> > > > Dr. Shehab said that stopping tx now temporarily would be much > > better > > than toughing it out and having to stop for good partway through. > > If > > I feel much better after 3-4 days of not treating, then we'll know > > it > > was the treatment and adjust accordingly. He also acknowledged > that > > he knows it's not my depression and said my attitude is very > > positive.> > > > More prayers, please . . .this was tough to hear.> > > > Robin> > > > > > > > > > > > > > Jackie> >> > > > > > > Jackie>Jackie font Times New Roman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 That is an awesome testimony about YOUR road of treatment! Thank you for supporting everyone here,, especially Robin.. hugs jax Davies <lisamariedavies@...> wrote: Hello Robin, I hope you don't mind me stopping by and introducing myself. I read where you are just at the start of your treatment, and I felt compelled to drop you a line. I haven't been online in quite awhile as I have been undergoing some major changes in my life - I just recently made the move from Denver back to Kansas, where I am originally from. And previous to that, I had moved to Denver about a year ago to take care of my dying Mother. I found out I had hep-C in 2002, at that time I had only had it about 15 months, and could give exact day as to when I received it, so I had very little damage and my viral load was extremely low. I immediately wanted to start treatment and rid the virus from my body. At the time I was in Pheonix and was able to use Mayo Hospital. I am geno type 1A and was suppose to do the TX for 48 weeks. I did clear the virus at 11 weeks, and remained clear for over 2 years, however I had to stop treatment at 16 weeks due to moving to Kansas and loosing my insurance. This February I found out that the Hep-C had returned and back with a vengeance. I have had another biopsy and am still in stage 1 but grade 3 now, I feel very blessed that my liver is still in good shape, however my viral load is over 7 million at this point. I must start the treatment as soon as possible, so they tell me. I have actually put it off until just recently and will be starting by no later than mid July. I wanted to tell you that it sounds like you are doing wonderful and taking very good care of yourself, and I know that can be very hard to do when we are on treatment. I had every symptom possible and I think I even found some new ones - LOL, but true. I was so deathly ill, there were many days I couldn't get out of bed. There were times I literally crawled to the bathroom. My body ached and hurt so bad, I remember waking up, when I could sleep, and screaming out in pain grabbing my leggs, saying; "I can't take the pain anymore, I am quitting this crap". That's putting it nicely. LOL My on-line friends helped me through , as I can honestly tell you, I would have NEVER made it through even the 15 weeks without them. They were Angels, saviors, and my rock, without them, I would still be sick to this day, and my liver would have been in much worse shape. Like you, I did manage to get the water down everyday - I was much heavier than, and the amount of treatment is based on weight, as I recall I took 5 riba a day, and 180 of the interferon a week. I remember a couple of times when I didn't get the amount of water down that day or for a few days straight, and I felt even worse - which I never thought could have been possible. I could barely eat and wasn't at all good at forcing myself. I did take the silver vitamins, and I had been taking milk thistle, but my Doctor made me stop taking it while on treatment. He said that it protects the liver so well that it can sometimes prevent the treatment from doing it's job. However, now I hear different - so not sure on that one. If you know any facts on it, let me know if you don't mind. Everything tasted of metal, and I couldn't handle smelling food - expecially while cooking. I will tell you that the first couple months were the worst, and it seemed to get a little easier as time went on. So if you made it through the first week okay - there is a good chance that it will get much easier on you and won't be nearly as bad. I would like to stay in touch with you if you don't mind, as we will be doing treatment at the same time, just a few weeks apart, and maybe we could support one another?? You let me know Anyways - I just wanted to say hello, and let you know that yes you are doing all the right things, pat yourself on the back, and know that I will keep you in my prayers. Stay in touch when you can, I know there will be days that you just won't feel like going on-line and talking about it, at least I did. I got to a point, where I was feeling so crappy, I didn't even want to hear myself complain anymore. In fact I remember thinking, I know my online friends have to tired of hearing me complain. However, now that I have had a chance to be hep free for awhile, I realize that is not true, and that is what we are all here for is to lean on one another. I wish you all the best and may God continue to bless you and yours Love, hugs, prayers, and peace. Marie -- Robin..personal Good Morning Robin Well it certainly does sound and look like you are doing things right! Im glad to hear you are doing your Riba with some fat as that helps it to work better. Listen hon, IF watermelon, hot soup and eggs are what look and taste ok, then eat THAT. The fruit is really good and when your mouth is sore, is easy to eat whereas a more citrusy fruit would burn. Eggs are PERFECT protein and unless your liver is decompensated, YOU really do need the protein.. Protein shakes are really good for getting it down, just make sure that the one you are using has NO IRON in it or very very low iron.Also if you are taking vit C, make sure not to take it at the same time as the protein shake if the shake has added iron as vit C will help with the absorption of iron and that you dont want. I remember just how everything looked and smelled right but very little tasted right, everything has a sort of metally taste.. but the nausea will most definately be easier if you do get enough nutrition.. you can take a multivit as long as it doesnt have iron in it,, I know many who take Centrum Silver because it doesnt have the iron. It does look like you are getting plenty of hydration but you might want to add some electrolyte solution to make sure that you are not washing them away. I used a product called LowOz and Liz uses gatoraid but you could use pedialyte as well. I still have trouble eating more than 2 or 3 small meals and typically I end up with one or two.. I'm 3 1/2 years post tx and still cannot manage much food. Its pretty frustrating because Im still overweight but it IS coming off..... slowly.. Has the Antivert helped? The dizziness is really common on treatment but I hated it myself. I ALWAYS felt woozie and light headed especially if I got up too fast. So you should really take it easy when going from laying to sitting or standing. Get up really slowly so that your body can adjust your blood pressure so you dont pass out and fall or hurt yourself.. Well, it really looks like you ARE doing everything right. The best piece of advice I can give you is to tell you that this treatment while very difficult IS DOABLE. But..and there is always a but, YOU HAVE to pace yourself. Listen to your body, if you need to rest, then rest, if you need to sleep, then sleep, eat when you can, keep going with the fluids and try to keep a positive attitude ( you have that already).. and REMEMBER,, THIS treatment is NOT FOREVER.. What I did was to buy a stuffed animal that was a dragon and EVERY week, when I did my shot, I stuck a hatpin in the dragon. When I started the procrit and neupogen, I stuck it with hatpins with EVERY shot. It was MY way to visualize the progress I was making as I saw the stack of un-used pins growing smaller and smaller and watching the dragon filling up with pins. EVERY time I stuck a pin in it,, I visualized the virus dying.. My granddaughter wanted my dragon so when I was done, I pulled all the pins out and she still has it in her toybox! Well, stay with us hon, ALL of us here want YOU TO SUCCEED.. We will help you in any way we can.. You are doing GREAT!!!!! Hang in there and remember that we are only an email away.. hugs jaxadoptbc <adoptbc@...> wrote: Jackie,The PCP felt it might be Benign Positioning Vertigo or Meniere's Disease; he gave me Antivert. So far, I have the green light to continue with tx---I absolutely do NOT want to stop treatment.I know I'm not getting enough sleep or protein. I'm drinking a gallon of water a day, plus some low-sugar cranberry juice. I'm trying to eat 4-5x a day, small meals, but on my worst days, have only managed 3x. I need to eat more vegetables.I'm taking my pills with peanut butter & crackers or pb on toast. I'm generally eating 2-3 servings of fruit, 1-2 servings of bread, 2 servings of veggies, 1 serving of chicken, some egg whites and cereal with low-fat milk. My taste has changed a lot and nothing except watermelon, hot soup & eggs look good to me right now.This morning, I'm drinking a protein shake and plan to do that in the a.m. and p.m. to combat this exhaustion. Tonight is my 2nd shot.Suggestions, Jackie? Robin> > about my side effects.> > > > I'm not anemic, but my dizziness is constant and extreme, as well > as > > my fatigue. I wrote down how I've been feeling and what little > I've > > been doing.> > > > He's a great doctor/really listens to me. His exact quote was "I'm > > concerned that you were dizzy and fatigued before the treatment > > started and now it's much worse---it could be an underlying > > neurological problem . .> > Dr. S. noticed some nystagmus when doing the eye test with me--> > perhaps it's vertigo or an inner ear problem.> > > > He called my PCP and I'm leaving soon to catch her last appt. Dr. > > Shehab said he's 75% sure he'll be telling me tomorrow to > > temporarily > > stop treatment (depending on what my primary says about additional > > tests).> > > > Dr. Shehab said that stopping tx now temporarily would be much > > better > > than toughing it out and having to stop for good partway through. > > If > > I feel much better after 3-4 days of not treating, then we'll know > > it > > was the treatment and adjust accordingly. He also acknowledged > that > > he knows it's not my depression and said my attitude is very > > positive.> > > > More prayers, please . . .this was tough to hear.> > > > Robin> > > > > > > > > > > > > > Jackie> >> > > > > > > Jackie>Jackie font Times New RomanJackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 hehehe,, arent I tarded,, lol,, I just blame it on the INF,, heheus4heavenbound@... wrote: In a message dated 7/1/2006 3:46:40 PM Pacific Standard Time, redjaxjm@... writes: Geri the info I post is for everyone,, and Im so glad if it helped you too! I know what you mean about vomiting,, I cry if I vomit,, I hate it that much.. Im not sure what "N" means,,, I found that the fresh fruits really helped with the nausea too Thats what it means...lol...good I have lots of that, fruit that is..geri Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 WHERE IN OREGON did you go????? us4heavenbound@... wrote: In a message dated 7/1/2006 3:45:22 PM Pacific Standard Time, redjaxjm@... writes: the nurse who held our class was very adamant about that... jax well i never had a class either...geri Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 WHERE IN OREGON did you go????? us4heavenbound@... wrote: In a message dated 7/1/2006 3:45:22 PM Pacific Standard Time, redjaxjm@... writes: the nurse who held our class was very adamant about that... jax well i never had a class either...geri Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Hello Geri, Nice to meet you, again, sorry that it is under these circumstances, but still a pleasure to meet you. So, you are in your 7th week - how are you doing? Any severe side affects yet? Usually if you are not having any by now, you won't, most of the time the sides get better as you progress with the chemotherapy. What state are you in? I am in Kansas, which is home to me, however, I have spent many years in the mountains in Colorado - sure do miss them. Just a little info for ya - I am geno 1A, so I will be going through 48 weeks of treatment. Do you know your geno type yet? Ya know, I had problems with my memory, and don't feel like I have ever regained that back entirely - have you had any problems. I also had to file for Social Security Disability in order for me to get the insurance from the state - first time in my life that I am not working, with the exception of the last time I was on treatment, as I was just simply to ill to work. Anyway the not working is the hardest part for me right now, I try to stay busy with mowing, gardening, a little painting and remodeling, and then I have been watching my grandbabies when needed. Geri I would absolutely love for you and I to make it through this treatment together and I hope Robin joins us. Also, maybe sometime we can exchange phone numbers so that we may chat. It's nice to put a voice to whom we chat with all the time. Also I will include a picture taken a few days ago of myself and my son, we were goofing off with the PC camera. Again, it's nice to put a face with a voice. Look forward to getting to know you, and know that I will keep you in my prayers. May God Bless and keep you and yours Love, hugs, prayers, and peace Marie -- Re: Robin..personal hi lisa-marie i am geri and i am in my 7th week. i have slight damage and mt load is 4 mill. so i would like to be with you and robin as we go threw this together...thanks geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Hi Marie, Thanks for sharing your story---I read your post to Geri, too. I'll be glad to share the journey with both of you and don't mind exchanging phone numbers (I'm a big talker, LOL). I am also type 1, with mild to moderate fibrosis and viral load of over 2,000,000. I, however, have known about my Hep C since 1990 (probably from surgery in 1988). The Hep C never gave me any problems until this past February. Other than Dh, my family was against me starting treatment now--- both of my adopted sons (I also have 2 older bio daughters) have serious emotional problems and one has been hospitalized multiple times for psych issues. I have spent many hours in the past 2 months trying to secure community services for my boys. I told Dh yesterday that this is the hardest thing physically I've ever been through. Last night, I did a little dance and told Dh, " Time for my 2nd shot---only 46 to go " !! Besides the exhaustion and muscle aches, the most difficult thing has been this vertigo that I have now. I was dizzy and tired before treatment started, but now have trouble moving my head much, my gait is unsteady and the slightest movements trigger the vertigo. Now I totally understand how some of my clients felt (I'm an occupational therapist). I also haven't worked since May, but don't get me started on money (or lack of). Well, don't mean to ramble on so, but my boys have been up since 3:30 this morning. They are going to respite until Tuesday, as I'm anticipating the shot kicking in by tomorrow. This is a very supportive group, , and we're glad you're here. Hugs, Robin Dh/ Bio dd/, age 22 (Bipolar, ADHD/lives on her own) Bio dd/Alyssa, age 18 ( " easy kid " ) Adopted ds/Benny, age 7 (Bipolar, ADHD, ODD) Adopted ds/Christian, age 6 (Bipolar, ODD) P.S. Only I could have 3, unrelated, bipolar children!! > > > about my side effects. > > > > > > I'm not anemic, but my dizziness is constant and extreme, as > well > > as > > > my fatigue. I wrote down how I've been feeling and what little > > I've > > > been doing. > > > > > > He's a great doctor/really listens to me. His exact quote > was " I'm > > > concerned that you were dizzy and fatigued before the treatment > > > started and now it's much worse---it could be an underlying > > > neurological problem . . > > > Dr. S. noticed some nystagmus when doing the eye test with me-- > > > perhaps it's vertigo or an inner ear problem. > > > > > > He called my PCP and I'm leaving soon to catch her last appt. > Dr. > > > Shehab said he's 75% sure he'll be telling me tomorrow to > > > temporarily > > > stop treatment (depending on what my primary says about > additional > > > tests). > > > > > > Dr. Shehab said that stopping tx now temporarily would be much > > > better > > > than toughing it out and having to stop for good partway > through. > > > If > > > I feel much better after 3-4 days of not treating, then we'll > know > > > it > > > was the treatment and adjust accordingly. He also acknowledged > > that > > > he knows it's not my depression and said my attitude is very > > > positive. > > > > > > More prayers, please . . .this was tough to hear. > > > > > > Robin > > > > > > > > > > > > > > > > > > > > > Jackie > > > > > > > > > > > > > > > > > Jackie > > > > > > > > Jackie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Dear Robin, I am so sorry that you have so much on your plate right now and trying to get through treatment. I too have a loved one with bi-polar, my Mother has been since 1971 and has been on lithium ever since. Her and my Father divorced the same year she was diagnosed, so she didn't raise me. I do know that back then they kept them in the hospital a long time, as she was there for 6 years straight the first time. And it took 6 shock treatments to bring her back to reality. I didn't see much of her growing up, however after I got through school and married - I then began to know my Mother. I have been through many of her episodes with her, when she becomes manic, and I know just how mentally and physically draining they can be. In fact when I mentioned I had moved to Denver a year ago to take care of my dying Mother - she was mentally ill and in a manic phase when I arrived, along with all her major health problems. It has been a very difficult task taking care of her. People that are bi-polar tend to think only of themselves and can become very violent at times. I watched her deteriorate for the last year, she has COPD, emphysema, extremely high blood pressure, congestive heart failure, extremely over weight for her frame and height, and chain smokes over two packs of cigs a day. She is also suppose to wear oxygen - but refuses to keep it on. Sometimes I would feel as though I was dealing and trying to reason with a very small child. I know that it took it's toll on me - so I can only imagine what you must be going through. I hope and pray that you have got a good support system and that your husband is a tremendous help It sounds like you are a very upbeat and wonderfully spirited soul - and I agree laughter is the key. And I too believe it will be a major help to getting you through the treatment. When you tell me that you are dizzy, it reminded me of my ex-husband and what happened to him while going through chemotherapy for cancer. This was back in 2000, I took him to MD in Houston and we stayed around 6 months or so. He became highly allergic to the chemotherapy that they were giving him and he had severe reactions. One of the problems was that the chemotherapy shrunk that cerebellum in his brain, which this lies in the back of your head at the very bottom - it's function is to give us our sense of balance. I was just wandering if your Doctors know what is causing this dizziness, if not, you might ask them about this.. I know I got dizzy at times, but almost always when I went to get out of bed and I would forget and try to rise quickly. I too had extreme body aches, those I remember the most - mine were debilitating. As I come back to these groups, I find myself remembering a lot of what I went through, I think I had blocked allot of it out for a very long time. I have to tell you that I admire your strength and courage, you are definitely an inspiration for me and I am sure all would agree. I am so glad that we have come across one another and I think that if we all can just stick together and support each other - when one gets down then the rest of us pick them up. And the truth and reality of our disease - although we may have family and friends to support us and be there for us - however there is no one that truly understands what we must endure and how we feel physically and emotionally but a HEPPER....!!! So we Gals will beat this dragon together..... Team work...!!! And you definetly have the "right" attitude for it - I promise to work on mine..... I will quit babbling myself, as you can tell, I am a talker too. Here is another email you may write me at and we can exchange phone numbers when you would like. I have unlimited long distance so I can always call you right back. Take care of you and May God continue to bless and keep you and yours.. Love, hugs, prayers, and peace Marie -- Re: Robin..personal Hi Marie,Thanks for sharing your story---I read your post to Geri, too. I'll be glad to share the journey with both of you and don't mind exchanging phone numbers (I'm a big talker, LOL).I am also type 1, with mild to moderate fibrosis and viral load of over 2,000,000. I, however, have known about my Hep C since 1990 (probably from surgery in 1988). The Hep C never gave me any problems until this past February.Other than Dh, my family was against me starting treatment now---both of my adopted sons (I also have 2 older bio daughters) have serious emotional problems and one has been hospitalized multiple times for psych issues. I have spent many hours in the past 2 months trying to secure community services for my boys.I told Dh yesterday that this is the hardest thing physically I've ever been through. Last night, I did a little dance and told Dh, "Time for my 2nd shot---only 46 to go"!!Besides the exhaustion and muscle aches, the most difficult thing has been this vertigo that I have now. I was dizzy and tired before treatment started, but now have trouble moving my head much, my gait is unsteady and the slightest movements trigger the vertigo. Now I totally understand how some of my clients felt (I'm an occupational therapist). I also haven't worked since May, but don't get me started on money (or lack of).Well, don't mean to ramble on so, but my boys have been up since 3:30 this morning. They are going to respite until Tuesday, as I'm anticipating the shot kicking in by tomorrow.This is a very supportive group, , and we're glad you're here.Hugs,RobinDh/Bio dd/, age 22 (Bipolar, ADHD/lives on her own)Bio dd/Alyssa, age 18 ("easy kid")Adopted ds/Benny, age 7 (Bipolar, ADHD, ODD)Adopted ds/Christian, age 6 (Bipolar, ODD)P.S. Only I could have 3, unrelated, bipolar children!!> > > about my side effects.> > > > > > I'm not anemic, but my dizziness is constant and extreme, as > well > > as > > > my fatigue. I wrote down how I've been feeling and what little > > I've > > > been doing.> > > > > > He's a great doctor/really listens to me. His exact quote > was "I'm > > > concerned that you were dizzy and fatigued before the treatment > > > started and now it's much worse---it could be an underlying > > > neurological problem . .> > > Dr. S. noticed some nystagmus when doing the eye test with me--> > > perhaps it's vertigo or an inner ear problem.> > > > > > He called my PCP and I'm leaving soon to catch her last appt. > Dr. > > > Shehab said he's 75% sure he'll be telling me tomorrow to > > > temporarily > > > stop treatment (depending on what my primary says about > additional > > > tests).> > > > > > Dr. Shehab said that stopping tx now temporarily would be much > > > better > > > than toughing it out and having to stop for good partway > through. > > > If > > > I feel much better after 3-4 days of not treating, then we'll > know > > > it > > > was the treatment and adjust accordingly. He also acknowledged > > that > > > he knows it's not my depression and said my attitude is very > > > positive.> > > > > > More prayers, please . . .this was tough to hear.> > > > > > Robin> > > > > > > > > > > > > > > > > > > > > Jackie> > >> > > > > > > > > > > > > > Jackie> >> > > > > > Jackie> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 Dear Jax, It is totally my pleasure to help anyone that I can in any way possible. So you are most welcome. There is allot of things that I don't remember about treatment, but one thing that stands very clear is how scared I was and the lack of knowledge that not only those around possessed, but myself included. And I think one of the worst parts was the stigma that goes along with this disease, it is just so frustrating, and so true about our government not doing there fair share of funding for not only research, but educating. Ya know, I stumbled across a web sight that you can order free post cards that help to educate people. I will have to look it up and send it to you all. With the stigma that is laid upon us, it makes it so difficult to come out of the closet so to spreak, and tell people of our chronic disease, and educate them on the statistics. Leaving the general public totally clueless. However, it is up to us - if we sit and do and say nothing, than we are just as guilty. I decided when I first found out it had returned that this time around I was going to make a difference, by helping to educate others, and maybe some how in a small way - help to save others lives. If we really try and look at it this way, it doesn't seem difficult at all. Anyway Jax, I appreciate you thoughtfulness, and know that I will do what I can whenever possible to help another hepper or to help educate... I am just so blessed that I have this group to come to for moral support, and for that I am ever so grateful to you all... I look forward to getting to know all of you. And know that I will be praying for you all May God Continue to bless you all and yours... Love, hugs, prayers, and peace to all.... Marie -- Robin..personal Good Morning Robin Well it certainly does sound and look like you are doing things right! Im glad to hear you are doing your Riba with some fat as that helps it to work better. Listen hon, IF watermelon, hot soup and eggs are what look and taste ok, then eat THAT. The fruit is really good and when your mouth is sore, is easy to eat whereas a more citrusy fruit would burn. Eggs are PERFECT protein and unless your liver is decompensated, YOU really do need the protein.. Protein shakes are really good for getting it down, just make sure that the one you are using has NO IRON in it or very very low iron.Also if you are taking vit C, make sure not to take it at the same time as the protein shake if the shake has added iron as vit C will help with the absorption of iron and that you dont want. I remember just how everything looked and smelled right but very little tasted right, everything has a sort of metally taste.. but the nausea will most definately be easier if you do get enough nutrition.. you can take a multivit as long as it doesnt have iron in it,, I know many who take Centrum Silver because it doesnt have the iron. It does look like you are getting plenty of hydration but you might want to add some electrolyte solution to make sure that you are not washing them away. I used a product called LowOz and Liz uses gatoraid but you could use pedialyte as well. I still have trouble eating more than 2 or 3 small meals and typically I end up with one or two.. I'm 3 1/2 years post tx and still cannot manage much food. Its pretty frustrating because Im still overweight but it IS coming off..... slowly.. Has the Antivert helped? The dizziness is really common on treatment but I hated it myself. I ALWAYS felt woozie and light headed especially if I got up too fast. So you should really take it easy when going from laying to sitting or standing. Get up really slowly so that your body can adjust your blood pressure so you dont pass out and fall or hurt yourself.. Well, it really looks like you ARE doing everything right. The best piece of advice I can give you is to tell you that this treatment while very difficult IS DOABLE. But..and there is always a but, YOU HAVE to pace yourself. Listen to your body, if you need to rest, then rest, if you need to sleep, then sleep, eat when you can, keep going with the fluids and try to keep a positive attitude ( you have that already).. and REMEMBER,, THIS treatment is NOT FOREVER.. What I did was to buy a stuffed animal that was a dragon and EVERY week, when I did my shot, I stuck a hatpin in the dragon. When I started the procrit and neupogen, I stuck it with hatpins with EVERY shot. It was MY way to visualize the progress I was making as I saw the stack of un-used pins growing smaller and smaller and watching the dragon filling up with pins. EVERY time I stuck a pin in it,, I visualized the virus dying.. My granddaughter wanted my dragon so when I was done, I pulled all the pins out and she still has it in her toybox! Well, stay with us hon, ALL of us here want YOU TO SUCCEED.. We will help you in any way we can.. You are doing GREAT!!!!! Hang in there and remember that we are only an email away.. hugs jaxadoptbc <adoptbc@...> wrote: Jackie,The PCP felt it might be Benign Positioning Vertigo or Meniere's Disease; he gave me Antivert. So far, I have the green light to continue with tx---I absolutely do NOT want to stop treatment.I know I'm not getting enough sleep or protein. I'm drinking a gallon of water a day, plus some low-sugar cranberry juice. I'm trying to eat 4-5x a day, small meals, but on my worst days, have only managed 3x. I need to eat more vegetables.I'm taking my pills with peanut butter & crackers or pb on toast. I'm generally eating 2-3 servings of fruit, 1-2 servings of bread, 2 servings of veggies, 1 serving of chicken, some egg whites and cereal with low-fat milk. My taste has changed a lot and nothing except watermelon, hot soup & eggs look good to me right now.This morning, I'm drinking a protein shake and plan to do that in the a.m. and p.m. to combat this exhaustion. Tonight is my 2nd shot.Suggestions, Jackie? Robin> > about my side effects.> > > > I'm not anemic, but my dizziness is constant and extreme, as well > as > > my fatigue. I wrote down how I've been feeling and what little > I've > > been doing.> > > > He's a great doctor/really listens to me. His exact quote was "I'm > > concerned that you were dizzy and fatigued before the treatment > > started and now it's much worse---it could be an underlying > > neurological problem . .> > Dr. S. noticed some nystagmus when doing the eye test with me--> > perhaps it's vertigo or an inner ear problem.> > > > He called my PCP and I'm leaving soon to catch her last appt. Dr. > > Shehab said he's 75% sure he'll be telling me tomorrow to > > temporarily > > stop treatment (depending on what my primary says about additional > > tests).> > > > Dr. Shehab said that stopping tx now temporarily would be much > > better > > than toughing it out and having to stop for good partway through. > > If > > I feel much better after 3-4 days of not treating, then we'll know > > it > > was the treatment and adjust accordingly. He also acknowledged > that > > he knows it's not my depression and said my attitude is very > > positive.> > > > More prayers, please . . .this was tough to hear.> > > > Robin> > > > > > > > > > > > > > Jackie> >> > > > > > > Jackie>Jackie font Times New RomanJackie *letter by Heidi* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 great pics...I have two of them..lol....boys that is...my 15 yr old just left Thursday for Australia and will be there until the 18th..I have 3A so not so bad.. I have some sx mostly being fatigued and some nausea the day of and the day after my shot...soreness although this shot didnt hurt so badly..yeah...geri A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 In a message dated 7/2/2006 2:22:49 AM Pacific Standard Time, adoptbc@... writes: Bio dd/, age 22 (Bipolar, ADHD/lives on her own) hey me too LOL...but I am Geri 47.. Quote Link to comment Share on other sites More sharing options...
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