Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 Greetings Miriam I was brought up as a Methodist. While I do believe in God, I don't practice any one religion. To me its more important that you believe in God, rather then how you worship God.Have you tried talking to your Rabbi? Sue M <brenda.morey@...> wrote: Welcome Miriam, You sound like you are a fighter! My sister-in-law has/had bone, lung and brain cancer, she was diagnosed a year ago in June and was only given 2-4 mos to live, well she has made it way past that and is still very much alive! The brain and lung cancer is gone and the bone cancer is in remission. She doesn't have to have chemo anymore and doesn't have to be seen by her doc until October. She is from Houston but recently moved out here to Irvine with her husband Craig, my husband 's brother. I live in Placentia so we are pretty close. I have fibromyalgia, asthma, allergies, chronic sinusitis and several other health problems including anxiety & depression--nothing fatal tho! My 22 yr old daughter has cystic fibrosis and goes to the cf clinic at Long Beach Memorial. It is a very good hospital, we used to go to CHOC and got screwed around so we finally left and found new docs in Long Beach. I also have a 24 yr old healthy son and a great & adorable 3 year old mutt dog Lucy. As for your spiritual issues, I am a Christian and I really don't think I could do this (be sick and have a sick child) without my Lord. I really lean on Him. I would encourage you to turn to your religion and if you are not finding it relevant or helpful consider a change. Not trying to convert you (I am not that kind of Christian). Just if you are feeling a void maybe even trying to read the New Testament. Just a suggestion. Ignore if you want to. love, For a REALLY HOT time check out http://www.peternoone.com and http://www.mikesmith1964.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 , Hi- I'm new here and reading to get prepared to write a little intro and I saw what you said about your SIL who has had cancer and is now in remission--I was wondering if you'd be kind enough to e-mail me what she did- traditional, alternative any info you can. My mother is battling lung cancer that has now spread to the bone and she is everything to me---I could never have managed my health issues without her, so anything I can do or find that might help her would be so greatly appreciated. I can be reached at christine_broaders@... if you could send me whatever info you can! Thank you so much! -- * Take care, * *Chris* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2007 Report Share Posted July 26, 2007 Welcome to the board! Thank you for taking such an active interest in - and researching it so much. There is a lot to read - hope you find what you are looking for! Hannah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 " Barbara " wrote: ....more research/knowledge/education...better it will be for all of us...committed member...wants to see a cure or...way to manage this condition... " The squeaky wheel gets the oil " ...let's make some noise!!! __________________________________________ I do agree, Barbara. But, I've been making " noise " for years now and the ONLY result I've seen is that the problem is getting worse instead of better! In fact, in my state, they tried to make a law saying that Fibromyalgia doesn't exist...thankfully it failed. BUT, now, the Fed govt is giving away grant money (yes, our tax $$'s)to states to set up these new depts that " license " these new individuals who've no medical background nor specialized training in pain but are calling theirselves " counselors " and are being placed within the offices of Pain Specialists...those physicians who are willing to prescribe opiates for pain. Yes, they are targeting (again) docs willing to go the extra mile to care for a Chronic Pain Patient...and the patient is being undertreated and, if in a maintenance program, being asked to find another doctor to go to! None seem to want to keep around a patient who has 24/7 pain and WILL have for the rest of their life...they don't want to be the doc who has to keep titrating that patient over the long term... I've been very vocal and feel that I am also being " followed " and, from being on the internet for many years, now also know that the DEA watches what's said in these public chat rooms and then " watches " certain individuals who are gutsy enough to oppose them. Recently, my state governor (KS) actually passed a new law regarding the medical treatment of those in pain...giving the state the right to interfer with the treatment - when the prescribing of narcotics is involved! They've also given the State Medical Board the right to tell a physician IF they have the " right " to prescribe opiates to any one particular patient! At this time, I'm preparing to find another physician in the next state! There, they've passed a law saying that NO entity can interfere with a physician for prescribing narcotics for pain and NO physician can lose their license to practice nor lose their personal assets and cannot be hounded by the DEA or any other entity! I've written to every Senator and many Congresspersons as well as the ONDCP and the DEA and the president regarding the improper witchhunts that are being carried on and how the CP person is being damaged, haunted, undertreated or not treated. What else can I do? There are over 7 million of us in Chronic Pain. None of us can stage a " sit-in. " What's left for us? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Wow! That is really quite scary. I'm so sorry you're having to deal with all of that. I hope that you can find a good doctor in another state - if that is the only way to get around Kansas' rules. How ridiculous! I had no idea that was going on across the country. Very scary for patient's rights. They need to pass the kind of chronic pain patient's rights like what california, oregon and washington have done. Whitney On Dec 10, 2007 5:18 PM, itsfeya <emerald_girl@...> wrote: " Barbara " wrote: ....more research/knowledge/education...better it will be for all of us...committed member...wants to see a cure or...way to manage this condition... " The squeaky wheel gets the oil " ...let's make some noise!!! __________________________________________ I do agree, Barbara. But, I've been making " noise " for years now and the ONLY result I've seen is that the problem is getting worse instead of better! In fact, in my state, they tried to make a law saying that Fibromyalgia doesn't exist...thankfully it failed. BUT, now, the Fed govt is giving away grant money (yes, our tax $$'s)to states to set up these new depts that " license " these new individuals who've no medical background nor specialized training in pain but are calling theirselves " counselors " and are being placed within the offices of Pain Specialists...those physicians who are willing to prescribe opiates for pain. Yes, they are targeting (again) docs willing to go the extra mile to care for a Chronic Pain Patient...and the patient is being undertreated and, if in a maintenance program, being asked to find another doctor to go to! None seem to want to keep around a patient who has 24/7 pain and WILL have for the rest of their life...they don't want to be the doc who has to keep titrating that patient over the long term... I've been very vocal and feel that I am also being " followed " and, from being on the internet for many years, now also know that the DEA watches what's said in these public chat rooms and then " watches " certain individuals who are gutsy enough to oppose them. Recently, my state governor (KS) actually passed a new law regarding the medical treatment of those in pain...giving the state the right to interfer with the treatment - when the prescribing of narcotics is involved! They've also given the State Medical Board the right to tell a physician IF they have the " right " to prescribe opiates to any one particular patient! At this time, I'm preparing to find another physician in the next state! There, they've passed a law saying that NO entity can interfere with a physician for prescribing narcotics for pain and NO physician can lose their license to practice nor lose their personal assets and cannot be hounded by the DEA or any other entity! I've written to every Senator and many Congresspersons as well as the ONDCP and the DEA and the president regarding the improper witchhunts that are being carried on and how the CP person is being damaged, haunted, undertreated or not treated. What else can I do? There are over 7 million of us in Chronic Pain. None of us can stage a " sit-in. " What's left for us? -- Eat, sleep, dream and be the music!Life is short, live each day to its' fullest!Cave softly and leave no trace.Find a cure for chronic pain!Ask about The Purrfect Petsitter and Infinite Creations! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 If every single one of us wrote to our representatives in Washington DC, it would raise some interest. Pam Re: Re: New Group Member Wow! That is really quite scary. I'm so sorry you're having to deal with all of that. I hope that you can find a good doctor in another state - if that is the only way to get around Kansas' rules. How ridiculous! I had no idea that was going on across the country. Very scary for patient's rights. They need to pass the kind of chronic pain patient's rights like what california, oregon and washington have done. Whitney On Dec 10, 2007 5:18 PM, itsfeya <emerald_girlsbcglobal (DOT) net> wrote: "Barbara"wrote:...more research/knowledge/education...better it will be for all of us...committed member...wants to see a cure or...way to manage this condition..."The squeaky wheel gets the oil"...let's make somenoise!!!__________________________________________I do agree, Barbara. But, I've been making "noise" for years now and the ONLY result I've seen is that the problem is getting worse instead of better!In fact, in my state, they tried to make a law saying that Fibromyalgia doesn't exist...thankfully it failed. BUT, now, the Fed govt is giving away grant money (yes, our tax $$'s)to states to set up these new depts that "license" these new individuals who've no medical background nor specialized training in pain but are calling theirselves "counselors" and are being placed within the offices of Pain Specialists...those physicians who are willing to prescribe opiates for pain.Yes, they are targeting (again) docs willing to go the extra mile to care for a Chronic Pain Patient...and the patient is being undertreated and, if in a maintenance program, being asked to find another doctor to go to! None seem to want to keep around a patient who has 24/7 pain and WILL have for the rest of their life...they don't want to be the doc who has to keep titrating that patient over the long term...I've been very vocal and feel that I am also being "followed" and, from being on the internet for many years, now also know that the DEA watches what's said in these public chat rooms and then "watches" certain individuals who are gutsy enough to oppose them.Recently, my state governor (KS) actually passed a new law regarding the medical treatment of those in pain...giving the state the right to interfer with the treatment - when the prescribing of narcotics is involved! They've also given the State Medical Board the right to tell a physician IF they have the "right" to prescribe opiates to any one particular patient!At this time, I'm preparing to find another physician in the next state! There, they've passed a law saying that NO entity can interfere with a physician for prescribing narcotics for pain and NO physician can lose their license to practice nor lose their personal assets and cannot be hounded by the DEA or any other entity!I've written to every Senator and many Congresspersons as well as the ONDCP and the DEA and the president regarding the improper witchhunts that are being carried on and how the CP person is being damaged, haunted, undertreated or not treated. What else can I do?There are over 7 million of us in Chronic Pain. None of us can stage a "sit-in." What's left for us?-- Eat, sleep, dream and be the music!Life is short, live each day to its' fullest!Cave softly and leave no trace.Find a cure for chronic pain!Ask about The Purrfect Petsitter and Infinite Creations! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 You should look into having DNA testing done to rule out some of the other possible fever syndromes (FMF, NOMIDS, MUCKLE-WELLS SYNDROME, etc) just to be sure. Sound very much like to me. Many children with have the fevers stop once their tonsils are removed. There is an article on here that was in the washington post about it, and also a study that was done. Search for them on here. The study was successful in 26 of the 27 children (the one child it didn't work on had random fevers, not on a predictable cycle). We are seeing an ENT on Tuesday for our 2.5yr old who has been fevering for just over 2 yrs now (every 2 weeks for 3 days). It took us awhile to find a doctor who new about this and do testing. Now he is finally going to have surgery. I am so hopeful that it will be successful for him.  Hope this helps you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 You should look into having DNA testing done to rule out some of the other possible fever syndromes (FMF, NOMIDS, MUCKLE-WELLS SYNDROME, etc) just to be sure. Sound very much like to me. Many children with have the fevers stop once their tonsils are removed. There is an article on here that was in the washington post about it, and also a study that was done. Search for them on here. The study was successful in 26 of the 27 children (the one child it didn't work on had random fevers, not on a predictable cycle). We are seeing an ENT on Tuesday for our 2.5yr old who has been fevering for just over 2 yrs now (every 2 weeks for 3 days). It took us awhile to find a doctor who new about this and do testing. Now he is finally going to have surgery. I am so hopeful that it will be successful for him.  Hope this helps you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 Shayla, Welcome to the board - you have come to the right place for information regarding . . . I use the search feature to find posts that relate to what I want to find out about. Good luck in your researching - and hang in there! Hannah Fort Worth Aidan - 5 fevering 3 years Sid - 7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 Shayla, Welcome to the board - you have come to the right place for information regarding . . . I use the search feature to find posts that relate to what I want to find out about. Good luck in your researching - and hang in there! Hannah Fort Worth Aidan - 5 fevering 3 years Sid - 7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2008 Report Share Posted September 11, 2008 Welcome Kristy and Kassidy, It is nice to finally get a diagnosis isn't it? This has been such a great site for us. After joining this group I have gained a lot more knowledge about and what the options are; what drugs work best and the best dosage for administration; how great a T & A has worked for most; and lot's of support. My daughter Lily was diagnosed about a year ago - luckily we have a great Pediatrician (her son has Kawasaki's Disease) that saw the signs of some sort of periodic fever and referred us to an IF doctor at Children's Hospital Los Angeles. The IF doc wants her to take Opraped for the fevers but we don't like to use the steroids unless absolutely necessary. BTW, the steroid works phenomonally well and I can see why many parents do use it. After Lily's last fever (which was a really bad one) we have finally decided to get the tonsillectomy from a Pediatric ENT. I just can't fathom watching her go through these fevers for many years. Anyway, I hope you find this group helpful. And just know that you aren't alone! Take care, April Daughters Olivia 7 yrs, Lily 2 1/2 yr (fevering since 11 mos.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2008 Report Share Posted September 11, 2008 April, It was such a relief to finally get the actual diagnosis. Now I am desperate to find a " cure " and a doctor to perform it. I need this group more than you will ever know. I am so appreciative of your response. Have you already scheduled the tonsillectomy? Please keep me informed. The steroids work extremely well, however they bring the episodes back so much quicker for Kassidy. I do not want her to ever use them again. I am truly pushing for the T & A surgery and I want it yesterday. Kassidy has had so many fevers w/all the horrible symptoms that I don't think I can watch her go through another one. Her latest one started Thursday a week ago and she went on steroids. I am holding my breath and praying we have a little time before the next. Isn't it the worse feeling in the world to watch your baby be sick and not be able to help in any way? Thank you again -- I no longer feel so alone and helpless. I hate there are some many children w/it, and I would take it away if I could, but I am so glad to have you all. Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2009 Report Share Posted April 3, 2009 Hello everyone! I just found this site and was so excieted to find that there are more people out there with the same problems! I always thought I was just jinkeses and had bad luck with electronics. I break almost everything I touch for too long shock everyone I touch and always have problems with cell phones. I do have a question for everyone: do you see that when your in a good mood or very happy that the electric shocks are more stronger? This happens to me all the time but it seems that when I am happy I tend to break electronics or scamble up the frequencys more. The other day I went to put a movie in the PS3 and reset the whole thing! My husband had to input all the data back into it again for the third time. I'm afraid one of these days I'm going to erase the memory and it can not be restored. [] I'v done that on my coputer before I corupted the memory sticks and crashed the computer! lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2009 Report Share Posted April 4, 2009 Diane, I am so happy to hear someone else had the same problem. I talked to my Dr about it and they did a bunch of test on me and found nothen I will bring up lyphatic problem maybe something can be done about this. Thank you! From: lag1974 <lag1974 (DOT) com> Subject: New Group Member groups (DOT) com Date: Friday, April 3, 2009, 5:43 PM Hello everyone! I just found this site and was so excieted to find that there are more people out there with the same problems! I always thought I was just jinkeses and had bad luck with electronics. I break almost everything I touch for too long shock everyone I touch and always have problems with cell phones. I do have a question for everyone: do you see that when your in a good mood or very happy that the electric shocks are more stronger? This happens to me all the time but it seems that when I am happy I tend to break electronics or scamble up the frequencys more. The other day I went to put a movie in the PS3 and reset the whole thing! My husband had to input all the data back into it again for the third time. I'm afraid one of these days I'm going to erase the memory and it can not be restored. [] I'v done that on my coputer before I corupted the memory sticks and crashed the computer! lol Quote Link to comment Share on other sites More sharing options...
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