Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 You can find Motrin in a liquid that actually taste good. We didn't want to give motrin at first but the docters said that if you wait until the pain starts then it takes longer to get rid of the pain. If you give it every 4-6 hours as shown on the box then it will help and she wont be in pain all the time. What Shriners are you going to? Alesha 7 systemic Cobb <eacobb0706@...> wrote: Today has been complaining of her elbow hurting. I also asked her about standing for choir at church today because I noticed at one point she was trying to keep weight off one of her legs. She said she hurt a lot and almost felt like crying. Unlike ’s Nonverbal Learning Disability and ADHD where I can find many ways to help her, I feel with her joint pain there is almost nothing I can do. She refuses to take Motrin saying she already takes enough pills and doesn’t want to take more. The only time she has been willing to take the Motrin was when she came home from school unable to bear any weight on one leg because of heel and ankle pain due to overextending herself in PE (she has a note to allow her to self regulate participation in PE until she is seen at Shriner’s). I told her that if Shriner’s finds she has arthritis, she would probably have to take a few more pills and she did not like this idea. Her appointment at Shriner’s is on April 19th. I wish it were sooner. At least this is her month off (year-around school), so I don’t have to worry about her overdoing PE again before she is seen at Shriner’s. Beth 9.8 not yet diagnosed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 Alesha, Thanks for the suggestion. Since learned to swollow pills at 4 1/2 yrs old, she won't take liquid medication unless it is the only way the medication is available. The difficulty she has now is that she already takes 2 1/2 pills AM and 3 1/2 pills PM and the she hates the idea of taking anymore pills. will be going to Shriner's Children's Hospital of Northern California. Beth 9.8 not yet diagnosed > Today has been complaining of her elbow hurting. I also asked her > about standing for choir at church today because I noticed at one point she > was trying to keep weight off one of her legs. She said she hurt a lot and > almost felt like crying. > > Unlike 's Nonverbal Learning Disability and ADHD where I can find many > ways to help her, I feel with her joint pain there is almost nothing I can > do. She refuses to take Motrin saying she already takes enough pills and > doesn't want to take more. The only time she has been willing to take the > Motrin was when she came home from school unable to bear any weight on one > leg because of heel and ankle pain due to overextending herself in PE (she > has a note to allow her to self regulate participation in PE until she is > seen at Shriner's). I told her that if Shriner's finds she has arthritis, > she would probably have to take a few more pills and she did not like this > idea. > > Her appointment at Shriner's is on April 19th. I wish it were sooner. At > least this is her month off (year-around school), so I don't have to worry > about her overdoing PE again before she is seen at Shriner's. > > Beth > 9.8 not yet diagnosed > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 There is a shriner in northern cali? Where is it? I live near SF. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 Coolness!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 It was in San Francisco from 1923 to 1997. In 1997 they open a new hospital in Sacramento and closed the San Francisco hospital. The hospital is next to the University of California, Medical Center. It is the only Shriner's that has all three specialties. > There is a shriner in northern cali? Where is it? I live near SF. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 Jen, You are a wonderful compassionate friend. We could all use a Jen in our lives. I know Sara is so thankful to have you in hers. Shirley > > One of my best friends, Sara, has been living with RA for many years. > When we were kids I never really understood what RA meant and what > she was going through. In the mind of a child (who didn't know any > better) I just knew here fingers and toes looked different from mine. > As we grew older and I saw more of the pain and agony this condition > caused her, I fealt completely helpless. It just seemed so unfair. I > came to battle for her whenever a " dumb boy " would ever say anything > to make fun of her feet if she dared to wear sandles. Now, as adults > I search endlessly for something that will help. I'm kind of a > naturalist and can't stand all of the meds she is constantly pushing > into her system. I finally found something that seems to be helping > with the inflammation. It's a juice blend called MonaVie. From what I > understand, it's the highest level of antioxidants and phytonutrients > of anything on the market because of it's freeze-dried process. I > would recommend this juice to anyone who suffers from joint pain or > inflammation. If you want anymore info. on it I'd be glad to get you > more if you email me. For all of you that suffer like Sara, I pray > that something, anything can help you live your days with less pain. > If this stuff is the miracle it seems to be so far, I will be forever > grateful. > > Good luck and wishes to you all. > > ~Jen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 Hi, Jen. You are a good friend to Sara. There are so many people who just don't understand this disease and totally discount how we are feeling on a daily basis. Sara is lucky to have a friend like you. As for the MonaVie, I am glad that Sara is getting some relief with it. I tried it and it did nothing for me. I guess that's just a testament to how our bodies are so different and how we respond to different things. I guess that's why RA is so hard to treat in that it is very difficult to find the right blend of meds that will not only give us relief, but help to prevent the damaging effects of RA. Thank you for sharing your story....Doreen > > One of my best friends, Sara, has been living with RA for many > years. When we were kids I never really understood what RA meant > and what she was going through. In the mind of a child (who didn't > know any better) I just knew here fingers and toes looked different > from mine. > As we grew older and I saw more of the pain and agony this > condition caused her, I fealt completely helpless. It just seemed > so unfair. I came to battle for her whenever a " dumb boy " would > ever say anything to make fun of her feet if she dared to wear > sandles. Now, as adults I search endlessly for something that will > help. I'm kind of a naturalist and can't stand all of the meds she > is constantly pushing into her system. I finally found something > that seems to be helping with the inflammation. It's a juice blend > called MonaVie. From what I understand, it's the highest level of > antioxidants and phytonutrients of anything on the market because > of it's freeze-dried process. I would recommend this juice to > anyone who suffers from joint pain or inflammation. If you want > anymore info. on it I'd be glad to get you more if you email me. > For all of you that suffer like Sara, I pray that something, > anything can help you live your days with less pain. > If this stuff is the miracle it seems to be so far, I will be > forever grateful. > > Good luck and wishes to you all. > > ~Jen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 Thanks Shirley! I try to be as supportive as I can. I know she would do the same for me. Jen > > > > One of my best friends, Sara, has been living with RA for many > years. > > When we were kids I never really understood what RA meant and what > > she was going through. In the mind of a child (who didn't know any > > better) I just knew here fingers and toes looked different from > mine. > > As we grew older and I saw more of the pain and agony this > condition > > caused her, I fealt completely helpless. It just seemed so unfair. > I > > came to battle for her whenever a " dumb boy " would ever say > anything > > to make fun of her feet if she dared to wear sandles. Now, as > adults > > I search endlessly for something that will help. I'm kind of a > > naturalist and can't stand all of the meds she is constantly > pushing > > into her system. I finally found something that seems to be > helping > > with the inflammation. It's a juice blend called MonaVie. From > what I > > understand, it's the highest level of antioxidants and > phytonutrients > > of anything on the market because of it's freeze-dried process. I > > would recommend this juice to anyone who suffers from joint pain > or > > inflammation. If you want anymore info. on it I'd be glad to get > you > > more if you email me. For all of you that suffer like Sara, I pray > > that something, anything can help you live your days with less > pain. > > If this stuff is the miracle it seems to be so far, I will be > forever > > grateful. > > > > Good luck and wishes to you all. > > > > ~Jen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 Doreen, I'm sorry to hear that MonaVie didn't work for you. You are right, it is hard to find one thing that works for eveyone. I wish it wasn't such trial and error all the time. As if you aren't already dealing with enough, but you have to constantly being trying new things all of the time. Were you drinking MonaVie for at least a month? I know it took just over a month before Sara noticed relief. I actually drink it myself just because it's a convenient way to meet the nutritional requirements that my body needs from fruit daily. It puts cancer causing free radicals into a self-destruct mode, which is enough reason for me to keep drinking! Best wishes to you with the treatment of RA. If ever I hear of something else that may be helpful, I will pass it along as well. Jen > > > > One of my best friends, Sara, has been living with RA for many > > years. When we were kids I never really understood what RA meant > > and what she was going through. In the mind of a child (who didn't > > know any better) I just knew here fingers and toes looked different > > from mine. > > As we grew older and I saw more of the pain and agony this > > condition caused her, I fealt completely helpless. It just seemed > > so unfair. I came to battle for her whenever a " dumb boy " would > > ever say anything to make fun of her feet if she dared to wear > > sandles. Now, as adults I search endlessly for something that will > > help. I'm kind of a naturalist and can't stand all of the meds she > > is constantly pushing into her system. I finally found something > > that seems to be helping with the inflammation. It's a juice blend > > called MonaVie. From what I understand, it's the highest level of > > antioxidants and phytonutrients of anything on the market because > > of it's freeze-dried process. I would recommend this juice to > > anyone who suffers from joint pain or inflammation. If you want > > anymore info. on it I'd be glad to get you more if you email me. > > For all of you that suffer like Sara, I pray that something, > > anything can help you live your days with less pain. > > If this stuff is the miracle it seems to be so far, I will be > > forever grateful. > > > > Good luck and wishes to you all. > > > > ~Jen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Hi Jen and Group I was wondering if you can find MonaVie at any health food store?At this point I am willing to try ANYTHING!!!My RA doc tells me I can try what I want but in her experience you need to take the meds.I considered taking natural remedies and that was her response. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2012 Report Share Posted May 25, 2012 ,  I first began having symptoms at your age; now thirty years and over 10,000 meals later, I am still hanging in there with the type of esophagus you have now at 32. How many more meals can you endure?  If it was an easy matter to remove the bottom of the esophagus and attach it at that point to the stomach I am sure that doctors would be doing it. Remember, you still have the Lower Esophageal Sphincter (LES) in there that opens and closes (or mostly closes).  Most importantly, that I want you to take away from this is that you are not going to die from this disease. There are always options, and there will be more as time goes on.  What I would like to know from you right now is what is your quality of life? Can you get food down most of the time? Do you struggle all the time when eating? Are you able to sleep normally, given enough pillows? Please give us as much information about yourself, and perhaps we can all put our collective wisdom together and make you feel better about your prospects.  ________________________________ From: Mike Young <mmyoung5758@...> achalasia Sent: Friday, May 25, 2012 1:42 PM Subject: Re: Feeling Helpless  Oh I am so sorry your struggling right now. Everyone manages the disease differently. Have you gone to some good specialists? Dont give up...we have lots of very seasoned knowledgable  people here.Maureen From: amandatroff <amandatroff@...> Subject: Feeling Helpless achalasia Date: Friday, May 25, 2012, 12:31 PM  I read everyone's posts daily and they make me feel better, thank you. Am I the only one having trouble accepting that I will die from this disease? My E has made the L or sharp corner where food can block and began deforming and I still won't accept that I have a major problem. Once the deforming has happened why can't they just take the bottom part off and hook up to stomach?? What are the odds I can live another 20 years with this? After my last consult I have tried most of the things suggested on here, like drinking Coke to clean it out. It does seem to help me. I feel so confused about what I should be doing to ensure I live longer. How long can a person live with a feeding tube? I am only 32 and nowhere near ready to move on... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2012 Report Share Posted May 25, 2012 I don't know how helpful this will be for you but it was helpful for me. I found a study in a thoracic journal that indicated the mortality rate from achalasia was quite low. I can't remember the number but if you like, I can try and find the study again. It was on OVID, a medical search web site. I also have similiar fears as you. Feeling Helpless achalasia Date: Friday, May 25, 2012, 12:31 PM I read everyone's posts daily and they make me feel better, thank you. Am I the only one having trouble accepting that I will die from this disease? My E has made the L or sharp corner where food can block and began deforming and I still won't accept that I have a major problem. Once the deforming has happened why can't they just take the bottom part off and hook up to stomach?? What are the odds I can live another 20 years with this? After my last consult I have tried most of the things suggested on here, like drinking Coke to clean it out. It does seem to help me. I feel so confused about what I should be doing to ensure I live longer. How long can a person live with a feeding tube? I am only 32 and nowhere near ready to move on... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2012 Report Share Posted May 25, 2012 I can't let my own error stand. I wrote 10,000 meals in a 30 year period. If that was correct, I would be starving.  365 days X 3 meals a day = 1,095 meals in a year, multiplied by 30 years = 32,850 meals.  That's a lot of eating. In the early years, it was a huge amount of struggling.  , you have a long life ahead of you, and with that many meals ahead of you to reach where I am now, you need to have the most complete understanding of your condition, and your options. Also, there is nothing wrong with getting multiple opinions from different doctors. Some doctors even encourage it.  ________________________________ From: RICHARD FRIEDMAN <cynmark24@...> " achalasia " <achalasia > Sent: Friday, May 25, 2012 2:23 PM Subject: Re: Feeling Helpless  ,  I first began having symptoms at your age; now thirty years and over 10,000 meals later, I am still hanging in there with the type of esophagus you have now at 32. How many more meals can you endure?  If it was an easy matter to remove the bottom of the esophagus and attach it at that point to the stomach I am sure that doctors would be doing it. Remember, you still have the Lower Esophageal Sphincter (LES) in there that opens and closes (or mostly closes).  Most importantly, that I want you to take away from this is that you are not going to die from this disease. There are always options, and there will be more as time goes on.  What I would like to know from you right now is what is your quality of life? Can you get food down most of the time? Do you struggle all the time when eating? Are you able to sleep normally, given enough pillows? Please give us as much information about yourself, and perhaps we can all put our collective wisdom together and make you feel better about your prospects.  ________________________________ From: Mike Young <mmyoung5758@...> achalasia Sent: Friday, May 25, 2012 1:42 PM Subject: Re: Feeling Helpless  Oh I am so sorry your struggling right now. Everyone manages the disease differently. Have you gone to some good specialists? Dont give up...we have lots of very seasoned knowledgable  people here.Maureen From: amandatroff <amandatroff@...> Subject: Feeling Helpless achalasia Date: Friday, May 25, 2012, 12:31 PM  I read everyone's posts daily and they make me feel better, thank you. Am I the only one having trouble accepting that I will die from this disease? My E has made the L or sharp corner where food can block and began deforming and I still won't accept that I have a major problem. Once the deforming has happened why can't they just take the bottom part off and hook up to stomach?? What are the odds I can live another 20 years with this? After my last consult I have tried most of the things suggested on here, like drinking Coke to clean it out. It does seem to help me. I feel so confused about what I should be doing to ensure I live longer. How long can a person live with a feeding tube? I am only 32 and nowhere near ready to move on... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2012 Report Share Posted May 25, 2012 amandatroff wrote: > > ... Once the deforming has happened why can't they just take the > bottom part off and hook up to stomach?? What are the odds I can live > another 20 years with this? > When the esophagus becomes too much trouble they sometimes do a gastric pull-up, which is a type of esophagectomy. They remove most of the esophagus. No reason to leave some behind that will just go bad too. Then they form the stomach into a tube move it into the chest and connect it to what's left of the esophagus up in the neck. Most of us will not reach the point were he have that done. As to living long. No problem. Life expectancy, complications, and causes of death in patients with achalasia: results of a 33-year follow-up investigation. http://www.ncbi.nlm.nih.gov/pubmed/18787460 " CONCLUSION: Patients with achalasia experience a significant number of complications. Causes of death and life expectancy, however, do not differ from those of the average population. " notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2012 Report Share Posted May 25, 2012 You don't have to live in agony or die. Check out Facebook page ectomy for achalasia. A lot of people, including my daughter, had their esophagus removed and their stomach pulled up so they are eating normally. No more spasms. No more food getting stuck. You don't have to just live with this, or in some cases die from complications of the disease. My daughter was diagnosed at 11 years old and went through it all, ending in an ectomy at Tampa general with dr rosemurgy. Is it perfect? No. But it is a whole lot better then what she had. A second chance. Helene Sent from my iPad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2012 Report Share Posted May 25, 2012 That was the same study I saw. Faith Re: Feeling Helpless amandatroff wrote: > > ... Once the deforming has happened why can't they just take the > bottom part off and hook up to stomach?? What are the odds I can live > another 20 years with this? > When the esophagus becomes too much trouble they sometimes do a gastric pull-up, which is a type of esophagectomy. They remove most of the esophagus. No reason to leave some behind that will just go bad too. Then they form the stomach into a tube move it into the chest and connect it to what's left of the esophagus up in the neck. Most of us will not reach the point were he have that done. As to living long. No problem. Life expectancy, complications, and causes of death in patients with achalasia: results of a 33-year follow-up investigation. http://www.ncbi.nlm.nih.gov/pubmed/18787460 " CONCLUSION: Patients with achalasia experience a significant number of complications. Causes of death and life expectancy, however, do not differ from those of the average population. " notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2012 Report Share Posted June 1, 2012 Hello  This is the procedure my consultant has talked to me about. All seems a bit scary but living like this rest of my life terrifies me. ________________________________ From: " weissf@... " <weissf@...> achalasia Sent: Friday, 25 May 2012, 22:05 Subject: Re: Feeling Helpless  That was the same study I saw. Faith Re: Feeling Helpless amandatroff wrote: > > ... Once the deforming has happened why can't they just take the > bottom part off and hook up to stomach?? What are the odds I can live > another 20 years with this? > When the esophagus becomes too much trouble they sometimes do a gastric pull-up, which is a type of esophagectomy. They remove most of the esophagus. No reason to leave some behind that will just go bad too. Then they form the stomach into a tube move it into the chest and connect it to what's left of the esophagus up in the neck. Most of us will not reach the point were he have that done. As to living long. No problem. Life expectancy, complications, and causes of death in patients with achalasia: results of a 33-year follow-up investigation. http://www.ncbi.nlm.nih.gov/pubmed/18787460 " CONCLUSION: Patients with achalasia experience a significant number of complications. Causes of death and life expectancy, however, do not differ from those of the average population. " notan Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.