Wednesday, December 30, 2009
Wednesday, November 18, 2009
Holidays and more....
Sitting here wondering where once again a year has gone. It feels like we were just celebrating last year's holiday season, and once again we are upon another one. I do have one gripe about stores. It seems every year they get earlier and earlier putting out Christmas decorations, so long before the holiday, that you are almost tired of looking at it by the time Christmas is here. This year seems to have been the worst. They had Halloween stuff out weeks and weeks before October it seems. Then the day or two before Halloween, they had shelves and shelves of Christmas decorations and it is just like they skipped Thanksgiving, and here Christmas stuff is out 2 and a half months before it should be. I know due to the economy the retail business is probably trying to help shoppers and themselves by making the "buying" season longer. Since Wal Mart did away with layaway, along with K-Mart and Target that makes it more difficult because people can no longer get things early, put them in layaway and pay them out. Now with many over the max on their credit cards, most of us surely do not need another mound of credit card debt after the holidays. What also gripes me is as horrible as credit is now for many people, we tend to still get credit card offers in the mail. Many of them are also full of very expensive fees, that are so far hidden in the fine print, no one can find them. Then when a bill arrives and is 40 dollars or more higher than what it should be, you can see you have been scammed with either fees, or higher interest rates. I am going through my own mind getting ready to write my annual Christmas Letter to family and friends. It has been not a really great year for many reasons, most of it for us health reason, between Jim and myself. We can hope 2010 brings us comfort, answers, and hopefully peace, for us and the world.
Wednesday, November 11, 2009
Webinar/Teleconference for the New Lupus Medication Benlysta on November 30th!
Hello! I thought some of you with Lupus or are a care taker of someone with Lupus would be thrilled to listen to this Webinar, plus there will be a teleconference you can join in by following the instructions below.
This is exciting news about the first ever of its kind medication for Lupus!
I am thrilled and anticipating the day it is FDA approved so I can try it.
Rhia
Participate in the BENLYSTA Research Update Call on Monday, November 30, 2009 The Lupus Foundation of America (LFA) invites those living with lupus and interested in learning more about the results of the BENLYSTA studies to join us for a special Webinar on Monday, November 30, 2009 at 7 p.m. EST.
LFA’s Medical Director, Dr. Joan Merrill, will review the results of the BENLYSTA studies and answer questions. Questions can be submitted in advance by clicking this link.
http://donate.lupus.org/site/Survey?ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&SURVEY_ID=1260
Please note that space at the event is limited. The LFA will provide a summary of the discussion following the event for those who are unable to attend.
Call In Details
1. Dial the Conference Access Number: 212-401-6760 or 866-551-3680
2. Enter your Participant PIN Code followed by the # key: 7292757#
3. You will be placed on musical hold until the Event begins
4. To join the Web Conference click this link: https://www.anywhereconference.com/?Conference=130257715&PIN=7292757
5. Enter your Name
6. Click Go
Or Join the Web Conference Manually
1. To join the Web Conference log into: https://www.anywhereconference.com/
2. Enter the Web Login Reference: 130257715
3. Enter the PIN Code: 7292757
4. Enter your Name
5. Click Go
IF you need further informaton you can view the post about this on my Facebook page at:
http://www.facebook.com/home.php?ref=home#/ravishingrhia?ref=profile
This is exciting news about the first ever of its kind medication for Lupus!
I am thrilled and anticipating the day it is FDA approved so I can try it.
Rhia
Participate in the BENLYSTA Research Update Call on Monday, November 30, 2009 The Lupus Foundation of America (LFA) invites those living with lupus and interested in learning more about the results of the BENLYSTA studies to join us for a special Webinar on Monday, November 30, 2009 at 7 p.m. EST.
LFA’s Medical Director, Dr. Joan Merrill, will review the results of the BENLYSTA studies and answer questions. Questions can be submitted in advance by clicking this link.
http://donate.lupus.org/site/Survey?ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&SURVEY_ID=1260
Please note that space at the event is limited. The LFA will provide a summary of the discussion following the event for those who are unable to attend.
Call In Details
1. Dial the Conference Access Number: 212-401-6760 or 866-551-3680
2. Enter your Participant PIN Code followed by the # key: 7292757#
3. You will be placed on musical hold until the Event begins
4. To join the Web Conference click this link: https://www.anywhereconference.com/?Conference=130257715&PIN=7292757
5. Enter your Name
6. Click Go
Or Join the Web Conference Manually
1. To join the Web Conference log into: https://www.anywhereconference.com/
2. Enter the Web Login Reference: 130257715
3. Enter the PIN Code: 7292757
4. Enter your Name
5. Click Go
IF you need further informaton you can view the post about this on my Facebook page at:
http://www.facebook.com/home.php?ref=home#/ravishingrhia?ref=profile
Sunday, November 8, 2009
Ft. Hood, Tragedies in TX, Lupus good news and more
Hello to everyone! By now, me mentioning that we have wrangled our first "stump" and jumped over it on the health care reform bill, is probably "old news". :)
But, I still want to express my feelings, emotions, faith in us as a nation, and try and look at the positive side of this history making bill, since this past week has been such a tragic one.
I have written in my blog a bit about the events of this past week. Ft. Hood TX is only about 50 miles from me. Most people in this nation are familiar with Waco Texas, due to the fact about the "Branch Davidians" and David Karesh. The horrific events that took place in February 2003. Just in case you don't remember the nightmare that took place there here is a link that gives details of him, as well as the events that unfolded on the "Davidian Ranch" in 1993.
http://en.wikipedia.org/wiki/David_Koresh
Like many other states, Texas has had their share of horrific events, man caused and nature caused. We can look at Galveston Tx, that has now suffered two massive hurricanes that totally destroyed the city. One in 1900 and again in 1915, plus the most recent one "Ike" in 2008, that once again obliterated the entire community.
We have also had several "man made" issues, from the woman in Houston that drowned her 5 children due to post pardum severe depression/psychosis, Andrea Yates. That story rocked not only Texas, but our entire nation, leaving us totally shocked and confused.
Then their was the "Texas Cadet" murder by Diane Zamora and her boyfriend David Graham. Both of the in the Texas Cadet program, yet due to whom Diane considered a "rival" to her relationship, they both killed Andrea Jones in December 1995. This act of jealousy and violence took place again not far from where I live, in the Mansfield Tx area.
Here is a link to more information on this:
http://en.wikipedia.org/wiki/Diane_Zamora
OF course in 1966, there was the young man who climbed atop the University of Texas' Bell Tower. Charles Whitman then opened fire and mass murdered a number of people, along with wounding many more.
Here is a link to that story:
http://en.wikipedia.org/wiki/Charles_Whitman
Now we add to that "limited list" of outrageous and shocking horrors, what went on at Ft. Hood TX. Our state and our nation, plus around the world are still in shock and disbelief this one man, who has not only been in the Army serving for many years, but also a psychiatrist, could do something as evil as murder in cold blood his peers right their on the largest Army Base in the World.
Of course, now we have the monumental House vote that approved the first step of health care reform for our nation. Now it moves onto the Senate to pass their view of the bill, then comes to combining both, to go back to the House and Senate for final approval, and onto President Obama, for him to sign and make it officially law! Lots of steps to go, but this first one was extremely important.
Other good news this week, includes the breakthrough in the first ever of it's kind Lupus medication. After succesfully passing through all of it's clinical trials and being very positive on all counts, it is almost ready to go in front of the FDA for final approval, and then THANK GOODNESS ONTO US WITH LUPUS AS PATIENTS!
There are also a couple of other Lupus drug trials going on, some in Great Britan, along with a few more from what I have read here in the United States. I am so thrilled about these one of a kind, breakthrough medications, for it has been over 5 decades since any kind of clinical trial, medication, or much research has been done for SLE-Lupus patients.
There have also been many articles about more research and positive outcomes in the fight against Fibromylagia and Chronic Fatigue Syndrome! Our nation, along with others are really moving ahead on these syndromes, and since I am also a sufferer of FM and CFS, along with Lupus, Sjogren's, and Raynauds, it is music to my ears to hear this incredible news.
Other than that, we have had almost near perfect weather this past week. It has been sunny, with highs in the upper 70's, and the lows at night in the mid to upper 50's, which makes for pleasant conditions as far as sleeping.
Not too hot during the day, and not too cold either... today we do have another cool front moving in and it is cloudy, as we expect some rain with this one.
As far as my health and ongoing medical issues, I have been fighting another Lupus flare, off and on now for weeks. This one seems to be milder, but it just seems it is lingering longer. I do feel either a combination of meds are working, or the Methotrexate is working. I have an appt. with my PCP on the 30th. I want a consultation as to a game plan for my conditions. Keep me in mind over the next weeks, as I gather concerns, questions, & hope for my PCP to support a plan for me to get better.
Tuesday, October 27, 2009
Holidays, Dreams, Illness and Love
As I look forward to the fast upcoming holiday season, a piece of me is excited. Fall is upon us, and it has brought a cool fresh brick crispness to the air. One one hand I am thrilled to see the cooler weather, and the holidays, yet on another I am worried and stressed over the fact, my illnesses tend to zap my energy each day. I am truly concerned about all that I need to get done to be ready for Thanksgiving and Christmas. My usual holiday season was all about every room decorated, a beautiful tree, the smells of cinnamon, ginger, and spices in the air. The taste of homemade fudge, and home made fruitcakes. Our Christmas puzzles that have become one of our traditions over the past couple of years. We usually do a new one or two to add to our collection. The fun over buying gifts, and knowing how much your loved ones will be surprised. Family, especially my daughter, her husband, and my 2 grandson's, who are James, he will be 4 in December, and Logan, who is now almost 5 months old. I don't get to see them very often since they live about 8 hours away, so that is a joy I know is a blessing. Jim and I have done a Thanksgiving and Christmas dinner every year since our first one together. LOL, even though at times it is only us, and our two "fur kids", Tazz and Bubba Gump, my pug and chi-weenie, we cook like we are having part of the nation over for dinner. I love decorations in every room, like our Christmas bedspread, shams, and dust cover. I love making what I call a "yule log". I found some large enough pieces of our China Berry tree that I can take saw off in the right length, then I decorate them with holiday poinsettias', holly, little birds nests, etc to reflect the holiday we are in. They look awesome sitting on our table, and then on our heaters.
Yet, I also fear the holiday season. With each passing year, and especially this one, my physical health has failed even more. I see the hundred's of things I want to do, to be ready for the joy of the season, yet when I think about what I need to do, I go into overload, hoping and praying the Fibromyalgia, Lupus, CFS, and the rest do not get me so completely down in a flare, that I will be unable to enjoy the baking, shopping, cooking, decorating, and my family.
When you have something that is a chronic illness or chronic pain, even though you fight hard to not allow it to rule over your life, you come to find quickly, even with good stress, it can kick you down the mountain very fast, and leave you in a crumpled heap on the floor, until you can once again find the energy to force yourself back up the mountain. We have had a very difficult year in many ways, along with some good things also. My Lupus, and now Fibromyalgia has brought a whole new array of tests, doctors, and honestly new symptoms that are really at times getting me down and out. I find myself much more fatigued most days, I am slower at things I used to be fast at, and with the extensive and severe bruising all over my arms and legs, I feel embarrassed to go out in public, due to all of the looks and stares I get. I feel as if people think I have some kind of contagious disease like Leprosy or something, when I see the fear in their eyes. Now, the dermatologist seems to possibly think they could get much lighter, but it could be years, and even now, all we know it is it NOT skin related, but it is something to do with my blood vessels and it petechiae and purpura. Thus it is still a mystery, and between what the doctors have said and NOT said, Jim and I have a theory about the severe bruising. For one, we feel after much research, the Lupus itself is causing part of the issue. Lupus tends in some people to attack the blood vessels, causing them to weaken and "leak". Which makes sense, because the type of Lupus I have, can attack any type of connective tissue in the body, from the heart, lungs, kidneys, brain, skin and of course blood vessels. Secondly, the very medications that are helping to try the "wolf" at bay (Lupus means wolf in Latin, since one of the symptoms is a "butterfly" rash across the cheeks and bridge of the nose, making it appear like the "mask" of a wolf.) One of the medications in particular can weaken the vessels also, but it also thins the skin, so I am easier to get scratched, easier to bleed, and it takes longer for me to stop even a small wound from bleeding.
But, as the dermatologist said, it is NOT worth possibly making my Lupus worse by getting off the medications. I need them to keep the Lupus from causing further health issues, and even at that I still could develop more organs involved.
So, after all of my year plus research, I am adding yet more pills to my daily routine. But, this time I am adding more Vitamins and Supplements to the mix. The 4 I am adding are highly recommended on many of the huge Lupus support foundation sites. None of them are harmful to me, so I want to take a chance to see if they can help. Also, after much research on Fibromyalgia, I decided to try the Fibromyalgia/Guaifenesin Protocol. For some reason doctors have found out that Mucinex DM (the Guaifenesin) helps to lessen some of the symptoms of FM and CFS. It also is not harmful, so I have added it to the mix also.
I am keeping a daily very detailed journal of what we have added, what changes I have made as far as lifestyle as of lately, what the doctors have said, done and not said, nor done. We intend on arming ourselves with several pages of everything I have been through as far as tests, doctors, blood work, etc. along with my medications, and everything I am doing, so we can take it to my Primary Care Physician, who by the way honestly is the only one that really seems to care about what is going on with me, and he is more versed in many ways about Lupus, FM, and CFS than he darned specialists! WE intend on sitting down and having a consultation with him, and see if between the 3 of us we can come up with some type of "game plan" as to what to take, don't take, do not do, and so forth. Jim and I feel since he is very willing to listen, then give his sound advice, that we may be able to fight these Chronic Illnesses much better, and get my flares more in control.
Okay, I shall stop for now.... I hope the feel of Fall and Winter bring you much joy, and anticipation of family, food, friends and most of all... Love...
Yet, I also fear the holiday season. With each passing year, and especially this one, my physical health has failed even more. I see the hundred's of things I want to do, to be ready for the joy of the season, yet when I think about what I need to do, I go into overload, hoping and praying the Fibromyalgia, Lupus, CFS, and the rest do not get me so completely down in a flare, that I will be unable to enjoy the baking, shopping, cooking, decorating, and my family.
When you have something that is a chronic illness or chronic pain, even though you fight hard to not allow it to rule over your life, you come to find quickly, even with good stress, it can kick you down the mountain very fast, and leave you in a crumpled heap on the floor, until you can once again find the energy to force yourself back up the mountain. We have had a very difficult year in many ways, along with some good things also. My Lupus, and now Fibromyalgia has brought a whole new array of tests, doctors, and honestly new symptoms that are really at times getting me down and out. I find myself much more fatigued most days, I am slower at things I used to be fast at, and with the extensive and severe bruising all over my arms and legs, I feel embarrassed to go out in public, due to all of the looks and stares I get. I feel as if people think I have some kind of contagious disease like Leprosy or something, when I see the fear in their eyes. Now, the dermatologist seems to possibly think they could get much lighter, but it could be years, and even now, all we know it is it NOT skin related, but it is something to do with my blood vessels and it petechiae and purpura. Thus it is still a mystery, and between what the doctors have said and NOT said, Jim and I have a theory about the severe bruising. For one, we feel after much research, the Lupus itself is causing part of the issue. Lupus tends in some people to attack the blood vessels, causing them to weaken and "leak". Which makes sense, because the type of Lupus I have, can attack any type of connective tissue in the body, from the heart, lungs, kidneys, brain, skin and of course blood vessels. Secondly, the very medications that are helping to try the "wolf" at bay (Lupus means wolf in Latin, since one of the symptoms is a "butterfly" rash across the cheeks and bridge of the nose, making it appear like the "mask" of a wolf.) One of the medications in particular can weaken the vessels also, but it also thins the skin, so I am easier to get scratched, easier to bleed, and it takes longer for me to stop even a small wound from bleeding.
But, as the dermatologist said, it is NOT worth possibly making my Lupus worse by getting off the medications. I need them to keep the Lupus from causing further health issues, and even at that I still could develop more organs involved.
So, after all of my year plus research, I am adding yet more pills to my daily routine. But, this time I am adding more Vitamins and Supplements to the mix. The 4 I am adding are highly recommended on many of the huge Lupus support foundation sites. None of them are harmful to me, so I want to take a chance to see if they can help. Also, after much research on Fibromyalgia, I decided to try the Fibromyalgia/Guaifenesin Protocol. For some reason doctors have found out that Mucinex DM (the Guaifenesin) helps to lessen some of the symptoms of FM and CFS. It also is not harmful, so I have added it to the mix also.
I am keeping a daily very detailed journal of what we have added, what changes I have made as far as lifestyle as of lately, what the doctors have said, done and not said, nor done. We intend on arming ourselves with several pages of everything I have been through as far as tests, doctors, blood work, etc. along with my medications, and everything I am doing, so we can take it to my Primary Care Physician, who by the way honestly is the only one that really seems to care about what is going on with me, and he is more versed in many ways about Lupus, FM, and CFS than he darned specialists! WE intend on sitting down and having a consultation with him, and see if between the 3 of us we can come up with some type of "game plan" as to what to take, don't take, do not do, and so forth. Jim and I feel since he is very willing to listen, then give his sound advice, that we may be able to fight these Chronic Illnesses much better, and get my flares more in control.
Okay, I shall stop for now.... I hope the feel of Fall and Winter bring you much joy, and anticipation of family, food, friends and most of all... Love...
Sunday, October 25, 2009
Texas Governor's Crimes
and believe me, I feel he has committed more than one! Just his stupid remarks about Texas "succeeding" from the rest of the United States was more than enough to convince me this guy is nuts... and does not give a damned about our State or our people!
This one really is just something else. No telling what will come of it, if anything, but I am thrilled to see they are trying to bring out in the open the lies, the fraud, and the incompetency of this jerk.
It makes me ashamed to even say I am from TX!
Here is the URL to the article:
http://firedoglake.com/2009/10/02/texas-governor-rick-perrys-crime/
This one really is just something else. No telling what will come of it, if anything, but I am thrilled to see they are trying to bring out in the open the lies, the fraud, and the incompetency of this jerk.
It makes me ashamed to even say I am from TX!
Here is the URL to the article:
http://firedoglake.com/2009/10/02/texas-governor-rick-perrys-crime/
Wednesday, October 21, 2009
More Awesome News about the latest clinical trials for the new Lupus Medications!
I shall definitely write about this tomorrow. I am thrilled about all three URL's and what they could mean for myself and the millions of others that suffer from Lupus, other autoimmune illnesses, Chronic Fatigue Syndrome and Fibromyalgia!
More Good News for Lupus at the American College of Rheumatology Meeting
Human Genome Sciences and GlaxoSmithKline Report Details of First Positive Phase 3 Clinical Trial for Lupus
Tuesday, October 20, 2009
Philadelphia, October 20, 2009—Drug company Human Genome Sciences (HGS) and GlaxoSmithKline (GSK) today reported details of the first of their two crucial Phase 3 trials of belimumab (Benlysta™) in people with systemic lupus erythematosus at the American College of Rheumatology’s (ACR) annual scientific meeting in Philadelphia.
“There is a lot of encouraging information in here for the 1.5 million Americans with lupus,” said Lupus Research Institute (LRI) President Margaret G. Dowd at the meeting.
HGS first reported on the clinical trial (BLISS-52) results this summer. If findings from the longer “BLISS-76” trial due in November are positive as well, the company can apply to the Food and Drug Administration (FDA) for drug approval in 2010—possibly the first drug approval for lupus in more than 50 years.
Specifics on effectiveness and safety
“The BLISS-52 Phase 3 results presented at ACR demonstrated that the efficacy of treatment with belimumab plus standard of care was superior to that of placebo [dummy drug] plus standard of care," explained David C. Stump, MD, executive vice president of research and development at HGS in a statement. “These data were statistically significant and were strongly supported across multiple measures of clinical effect and multiple time-points.”
The company shared these and other trial details on belimumab’s ability to significantly reduce lupus disease activity and the rate of lupus flares, as well as to lower the rate of flares and significantly delay the length of time to the first flare.
“Belimumab’s apparent capacity to lower the use of the dreaded corticosteroid, prednisone, is also notable,” said Dowd, who has heard from the thousands of LRI members that lessening the dosage of this often lifesaving but complication-ridden medicine is a priority. In the trial, a greater percentage of participants taking belimumab were able to reduce their prednisone use than those taking the placebo.
LRI Program Director Catherine Anastasia noted that the significant reductions in fatigue with belimumab would also come as particularly welcome news. “The fatigue of lupus can be draining and debilitating. A route out of the exhaustion would make a big difference in quality of life for so many.”
The company additionally reported that people taking belimumab generally tolerated the drug well.
Key trial design
“This is the first drug shown to be effective in ameliorating the signs and symptoms of lupus in decades,” said Daniel J. Wallace, MD, clinical professor of medicine at the David Geffen School of Medicine at UCLA. “It represents a breakthrough for finally utilizing a methodology that enables researchers to demonstrate disease improvement. This will benefit lupus patients and their doctors.”
BLISS-52 and BLISS-76 are the largest clinical trials ever conducted in people with lupus.
Dowd and other LRI representatives are among the thousands of attendees—physicians, health professionals, and scientists—at the Philadelphia meeting designed to advance rheumatology through programs of education, research, advocacy and practice support.
The new details of the trial are available here.
Fibromyalgia Breakthough -" A Case of Chronic Denial"
http://www.nytimes.com/2009/10/21/opinion/21johnson.html?pagewanted=1&tntemail1=y&emc=tnt
A Case of Chronic Denial
EARLIER this month, a study published in the journal Science answered a question that medical scientists had been asking since 2006, when they learned of a novel virus found in prostate tumors called xenotropic murine leukemia virus-related virus, or XMRV: Was it a human infection?
Vivienne Flesher
XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus — the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).
That would have been news enough, but there was more. XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually causes their condition, it may open the door to useful treatments. At least, it will be time to jettison the stigmatizing name chronic fatigue syndrome.
The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”
When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” — the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.
An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”
Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It’s no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome.
Many people don’t realize how severe this illness can be. It is marked by memory and cognition problems, and physical collapse after any mental or physical exertion. The various co-infections that occur only make matters worse. Many patients are bedridden. And recovery is rare. A significant number of patients have been ill for more than two decades.
XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus — the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).
That would have been news enough, but there was more. XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually causes their condition, it may open the door to useful treatments. At least, it will be time to jettison the stigmatizing name chronic fatigue syndrome.
The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”
When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” — the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.
An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”
Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It’s no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome.
Many people don’t realize how severe this illness can be. It is marked by memory and cognition problems, and physical collapse after any mental or physical exertion. The various co-infections that occur only make matters worse. Many patients are bedridden. And recovery is rare. A significant number of patients have been ill for more than two decades.This is incredible breaking news for Lupus Patients!
http://lupus.webmd.com/news/20091019/genetic-link-to-lupus
Genetic Link to Lupus
More Than a Dozen Different Genes May Play a Role in Causing Lupus
Reviewed by Louise Chang, MD
Oct. 19, 2009 -- At least a dozen or more genes may help explain what causes lupus, according to two new studies.
Researchers have identified 12 genetic variants that are associated with an increased risk of systemic lupus erythematosus (SLE), the disease commonly referred to as lupus.
Lupus is an autoimmune disease in which the body’s natural defense system attacks itself. The disease targets the joints, skin, and other organs of the body.
The exact cause of lupus is unknown, but researchers have long suspected that genetics play a role because the disease is more common in some ethnic populations than others and also tends to run in families.
Genetic Link to Lupus
In the first of two separate studies, published in Nature Genetics, researcher Vesela Gateva of Genentech in South San Francisco and colleagues compared genetic markers in 1,923 people with lupus and 4,329 healthy people.
They found five genes that were associated with an increased risk of systemic lupus erythematosus.
In the second study, Jian-Wen Han of Anhui Medical University in Anhui, China, compared potential genetic markers for lupus in 1,047 Chinese patients with SLE and a comparison group of 1,205 healthy Chinese adults.
Their results confirmed seven previously reported genes for lupus as well as identified nine new genes associated with an increased risk of lupus. Two of those genes overlapped with the five found by Gateva’s group for a total of 12 new potential genetic markers for lupus.
Researchers say the presence of these genes, together with environmental and lifestyle factors, such as sunlight, stress, hormones, cigarette smoke, and certain infections, may all play a part in what causes lupus.
Friday, October 9, 2009
Little Known Virus Could be the answer to Chronic Fatigue Syndrome
This is a true breakthrough for the millions suffering from Chronic Fatigue Syndrome. Those with it and related diseases such as Fibromyalgia have gone for years with little hope, very little explanation as to the cause, medications, research, and possibly a cure! I am thrilled about the thought of the possibility of some way to avoid or cure this life altering syndrome.
Plus, rather than make it appear it is all in our heads, now there is more proof it is truly a very real illness.
http://www.nytimes.com/2009/10/09/health/research/09virus.html?ref=health
Plus, rather than make it appear it is all in our heads, now there is more proof it is truly a very real illness.
http://www.nytimes.com/2009/10/09/health/research/09virus.html?ref=health
Thursday, October 1, 2009
Stand up for Health Care Reform and a Public Option! Make Congress see what really is happening!
http://www.thepetitionsite.com/2/make-it-mandatory-congress-spends-time-assisting-in-our-ers-or-with-a-patient-dying-with-no
The above URL goes to a petition I created on Care 2 to make is mandatory for Congress, both House and Senate to go spend 2 twelve hour shifts in one of our busy, overwhelmed ER's, or with a terminally ill patient with no insurance coverage. They need to see the real world daily drama so many millions of Americans go through daily! Sitting at a desk on the Congressional Floor does NOT give them a taste of their own medicine! Can you say Reality Check!
Thanks for your time and support! Rhia
The above URL goes to a petition I created on Care 2 to make is mandatory for Congress, both House and Senate to go spend 2 twelve hour shifts in one of our busy, overwhelmed ER's, or with a terminally ill patient with no insurance coverage. They need to see the real world daily drama so many millions of Americans go through daily! Sitting at a desk on the Congressional Floor does NOT give them a taste of their own medicine! Can you say Reality Check!
Thanks for your time and support! Rhia
Friday, August 21, 2009
A Quack Doctor, I still have no answers for my horrible health siutation
This is a letter I wrote to one of the places I am a member of in regards to health care reform. I have been so totally torn up about what happened to me this past Wednesday when I went to a referred Rheumatologist. Not only was I treated like crap, he basically told me I was either causing the horrible bruising (petechiea & purpura), or he insinuated Jim was causing it. Here is the letter and you will see why I am totally wiped, weary, and ready to just say to hell with it all!
The people of this nation have made it quiet clear, we speak as a majority to vote this health care reform bill into action. It is more than time that Congress puts the bipartisan back stabbing, acting like toddlers mess away, and get down to the brass tacks. Our present health care system is non-existent, old and antiquated, feeds on the insurance companies thriving, while the patients are being bled dry by the sky rocketing costs of medications, doctors visits, tests, and health insurance. NOW is the time for that to change! No MORE "pre-existing" bull, no more running not needed tests such as blood work, MRI's, CT's, and the entire gamut of what doctors do to get paid properly, as the insurance company slaughters the doctors by not paying what they truly owe them. I am totally shocked when I get one of my bills from a doctor. I am an established patient, not a new one, I see the doctor for a quick follow up, he is in there with me no longer than 3 to 5 minutes, yet the bill is over 250.00! And gosh knows from the nightmare of yesterday how much of a charge there will be by a total jerk of a physician I went to. I go to a new rheumatologist, he "blew off" the very reason I went to see him for. After I have had an entire battery of every blood test in the world by my hematologist in the last 3 weeks, this so called want to be a doctor, rheumatologist wanted to RUN THOSE TESTS AGAIN!! Why??? Well for one thing, the lab was OWNED BY THE RHEUMATOLOGISTS! Makes send huh... they also get the lab payments... so they can run up thousands of dollars worth of blood work that patients have already had done, so they can collect MORE MONEY from the consumers and our insurance companies. I would bet when I "see" the bill, he charges 500.00 plus in his fee, when HE NEVER ONCE TOUCHED ME, OR EXAMINED ME IN ANY FORM OR FASHION!! He has his "assistant" briefly ask a few questions, half way look at me, and I had provided A LARGE AMOUNT of brand new blood test results that I gave her... along with the reasons I was there. She left, was gone about 5 minutes, brought the doctor in, he said basically my other doctors were "idiots", that nothing was wrong EVEN THOUGH I AM COVERED HEAD TO TOE WITH EXTREMELY SEVERE BRUISING. I am constantly bleeding under my skin, and it has been going on now for almost a year!!! Yet this idiot said "he was NOT concerned about the bruising" and insinuated there was NOTHING to worry over, they are just “garden variety” bruises is what he told me...This is after 4 other doctors, along with lab technicians, and nurses, that this type of petechiae and purpura was NOT regular bruising. The other physicians seem to think it could be a type of vasculitis, due to the autoimmune illnesses that I have, which as Lupus, Sjogren’s and Raynaud’s. Everyone that knows me and sees me including my doctors are EXTREMELY CONCERNED about my health situation, and honestly every one including the nurses, lab technicians, and my doctors told me they are praying for me. That tells you this what ever it is that I am totally covered with is something potentially extremely serious. Now I am left at a cross roads once again, not even knowing where to turn, especially since my PCP and the hematologist told me, if I were to fall, or be in an accident, I could bleed to death internally!!! That if I fall, I go straight to the ER, or if I have any symptoms of internal bleeding. My story is a nightmare, just like so many. The doctors, insurance companies, and medical personnel care about MONEY! Not all of them, but many of us encounter this type of greed, not caring, non sympathetic physician, that wants to rerun tests, run up our bills, and make a fortune while like myself, I may NOT live if I don't find out what is causing this horrendous petechiae and purpura (special bruising other than a normal bruising caused by an autoimmune disorder. My own body and antibodies are attacking my blood veins, arteries and capillaries and basically destroying them)...
I am depressed, mad, hurt, shocked and most of all myself and my family and spouse are terrified I could bleed to death.
So something needs to be done... AND DONE NOW TO FIX THIS MESS we call Health care!
Wednesday, July 8, 2009
7 Days to Re-Invent and Invest in Your life
As I read through these, early this morning I began to realize just how little time we spend taking stock in our lives, what we want, what we do not want, how we cope, how we avoid coping, and we run around with so much "stuff" to do, we truly do not slow down enough to find out who we truly are.
This seems like a perfect 7 days of ways to re-invent ourselves, to clean out the old, bring in the new, and figure out how we fit into our own lives...
Rhia
(courtesy of Care2 network)
By Carole Lynne, Intent
To renew and reinvent our lives, we all need a plan. Here it is: a seven-day process to work with over and over. This plan incorporates physical, mental and spiritual work. Use the whole seven-day process, or choose any one of the days to work with as you create the life you want.
DAY 1: RE-CHARGE A Day of Commitment
Focus on changing your mind-set: This is the day to change the thought patterns playing in your mind. Get rid of phrases such as “I can’t.” “Why does this happen to me?” “Things always seem to go wrong.” “After three bad things happen, life will change for the better.” Insert thoughts such as “I can do it.” ” There are creative solutions to any problem.”
Create a visual logo that works for you: Imagine the ocean or the lake, water falls, butterflies, sunshine, moonshine — whatever works for you. Note the image or images that work for you, and if you begin to feel negative, simply bring one of your positive images to mind. Your image is your logo for positive energy.
Tools for Day 1: Motivational books, music, dance, art, all that is inspirational.
DAY 2: RE-VAMP A Day of Planning
What changes do you need to make in your home?
What changes do you need to make in your office?
What changes do you need to make in your exercise routine, OR do you need to begin an exercise routine (with doctor’s permission of course)?
What changes do you need to make in your diet?
Tools for Day 2: A notebook and pen, or computer.
DAY 3: RE-CYCLE A Day of Throwing Out
Choose an area of your home, your garage, your backyard, and clean it out thoroughly. Have three boxes set up: one for things to keep, one for things to repair, and one for things to give to others. The hard work begins.
Do not tackle your whole house on this one-day. This seven-day program can be repeated again, and each time you can choose a new area. You can repeat Day 3 every week for six weeks.
Tools for Day 3: Boxes to sort things in, vacuum cleaner, broom, dust rags, music to play to cheer yourself on through this hard day of work.
DAY 4: RE-FRESH A Day of Refreshment
This is a day of reward. If you cleaned out your office or home on day 3, then refresh this space with a new plant or bunch of flowers. Give yourself a present. Open the windows and make sure the light can shine in.
Tools for Day 4: A present for yourself.
DAY 5: RE-TURN A Day of Spiritual Contemplation
This is a day to contemplate your spiritual values and re-turn to the values that are important to you. This is a quiet day of soul searching. In the past two days you have re-cycled some of your belongings and you have refreshed an area of your house or office: you did a lot of physical work. You were involved with a lot of “things.” Today, focus on the soul level. Sit and connect with the God of your understanding and ask questions:
What is the meaning of my life?
What am I here to do in this lifetime?
What am I proud of and what advances have I made in my life?
Which areas of my life need work?
This is the day to take an honest look at the way you spend your time, the people you associate with, the worries that occupy you too much, the fears that you allow to control you, the anger you may have towards others.
Tools for Day 5: An honest heart and an inquiring mind.
DAY 6: RE-INVENT A Day to Change Patterns
Yesterday was an assessment day. It was a hard day. Today is a day to make plans to change the parts of your life that need changing.
Do you have health problems you are not facing? Make an appointment with a health professional or get back to taking care of yourself in the way that you know is best for you.
Are you allowing the problems of others to dominate your life? If so this is a day to make plans to change your schedule. If you are a caregiver, find creative ways to get time off. And do not say, “There is no way.” Find out what your community has to offer. If the person you are taking care of does not want to receive care from others, then you must be strong and explain that you have to have time off.
If you spend all your time compassionately listening to others, remember that you will burn out if you do not have time for yourself. We all know this, but we do not always allow time for ourselves.
Tools for Day 6: A notebook, pen, computer, a telephone, appointment book.
DAY 7: RE-INVEST A Investment Day in All That is Positive
While I hesitate to use the word “re-invest” during this financial crisis, it is time to think about how to best spend your money, how to best spend your time. You have spent an entire week taking a look at your physical and spiritual life. Today is the day to take a good look at your financial life as well. Another coffee for five dollars may not be the best way to go. A lot of takeout food costs money. Are there ways to organize your cooking so that you do not pick up as much food?
Tools for Day 7: Your financial records, your checkbook, a willingness to make changes.
OKAY LET’S GET STARTED AND CHANGE OUR LIVES!
Friday, July 3, 2009
Happy 4th of July Holiday Weekend to All!
May you be blessed, happy and safe over this 4th of July Holiday Weekend! Whether you are traveling, out at the lake, camping, hiking, boating, having a celebration at your home, with friends, family, or just a quiet weekend... take care, watch out for the crazy drivers, be sure to use a life jacket... and celebrate the freedoms we cherish.
May freedom ring across our nation and around our world!!!
Rhia
Thursday, July 2, 2009
Critical, URGENT, FDA trying to BAN Script Pain Meds! Please sign petitions!
I wanted to update all of you in regard to what the FDA is trying to potentially do, which would be a nightmare to all of us that suffer Chronic Pain, along with our Chronic Illnesses. The one good thing is that the House and Senate did pass the "Pain Patients Bill of Rights". :) So, I applaud Congress for that one! :)
But, on not so good of a note, and many of you may already have seen this in the news... the FDA is potentially trying to BAN extended release narcotic pain medications! I am venturing to say, that there are many here with the group that suffers just as I do, from horrible Chronic, sometimes even Daily, pain. This would be a horrid situation for us, for our families, our jobs, our friends and our quality of life. When I finally found my current pain doctor, I was overjoyed! Not only was he ready to help me with my pain medications, he has so far been excellent regarding keeping my pain under control. For that I am blessed.
As anyone with Chronic Pain knows, many times our prescription pain medications are what keep us having a full life, having happy spouses, happy kids, keeping our jobs, and making our lives as normal as possible. Without them, most of us would be in the bed, on the sofa, rendered not able to do anything. I know for me it was the difference as black and white. Within 2 days of beginning my medications a year ago, I felt better than I had in many, many years... probably 7 or more.
Now the FDA is trying to put a BAN on some narcotic pain medications and if you have seen they are also possibly taking Tylenol at higher doses and putting it as a prescription, and then lowering the doses in the over the counter acetaminophen.
This is an urgent, critical matter and I have two petitions that are directly going to the FDA, The House, The Senate, and the President, as well as my own House Rep, and Senators.
Here are the URL's about both petitions, along with the American Pain Foundations information and enlightenment on the entire thing.
I urge you to read this information when you can, and if you feel moved to sign the petitions I would be most appreciative. Anyone knowing what Chronic Pain is like, knows this would be disastrous to all of us.
Now, a little about my situation. I was having issues with high blood sugar levels, and had been having higher than normal levels from the past 3 or 4 glucose blood tests I had done. My PCP did a glucose tolerance test, and it showed "normal" but still I am seeing spikes in my levels when I do the check at home. So, I still am possibly sitting at the "pre-diabetic" position, but for now I am just taking it on my own, and keeping an eye out.
Also, my PCP, due to all of my blood work, now confirms, I do have Lupus. I also have Sjogren's and Raynaud's, to add insult to injury. I had a very horrible flare, that is still kind of going on, that caused me to not just have cracks in the corners of my mouth, but they got infected, thus I had been on antibiotics again for two rounds. My bruising is horrible! I look like I have been beat from my neck to my toes with a ball bat! Plus some of it is not just bruising, but petechia, which is kind of like tiny blood vessels rupturing and I have what looks like flat blood blisters everywhere.
My PCP finally decided my best bet in finding out what potentially is causing this is sending me to a hematologist. In fact my appointment is this afternoon. I DO NOT look forward to yet another doctor, also having to go to Dallas, but luckily he is in the same building that my pain specialist is in! For that I am blessed! I hope that he has a good bedside manner, is not just test happy, and can find some reason for the horrible bruising and petechia, and hopefully how we can get rid of it. With the Summer here and HOT weather, I am totally embarrassed to go anywhere. People just stare at my arms and legs, and I have to wonder if they think I am have horrible contagious disease, or if my husband is beating me....LOL... I found some "cover up" cream for my legs, which helps some, plus I have been using the self-tanning cream. Those both help a little on my legs. The darker my skin is, the bruising then is not as noticeable.
I am now on Methotrexate. My PCP and I had discussed it the past couple of visits I had with him, especially since I am having flares frequently, and it seems I just have a hard time shaking them. So, I am now on Plaquenil, Methotrexate, and 5mg. of Prednisone.
My husband Jim, has also been having one heck of a time with his lower back pain. We are now working on getting him some possible financial assistance so he can go to a new pain specialist over in Waxahachie. Jim has no insurance, he does not qualify for state assistance, due to the fact here in TX, the ONLY way to get Medicaid is to be pregnant, or have kids under 16, etc.
So we have a county program for very low income people that helps with medical bills. Most counties have what they call an Indigent Health Care Program, for those who cannot qualify for any other type of assistance. We hope, from what the PCP says, if we can get the financial assistance to see this Doctor, he would possibly due the injections in Jim's back. So keep him and myself both in your thoughts over the next weeks.
It is not just HOT here, but way higher than HOT!! We have had little reprieve from triple digit temps, along with a high humidity and dew point levels, that make it seem 110 degrees plus now for at least 10-12 days. It is horrible.
As I finish this up, I want to wish all of you a safe, Happy, and Beautiful 4th of July weekend! :)
As we have seen so much "bad" news from the situation in Iran, to No. Korea and their stunts, then the loss of several celebrities this week, including Farah Fawcett who finally lost her battle with anal cancer. She was an incredibly strong and brave woman that fought it since 2006. If you saw her special on TV I am sure you were touched by her story also. If you did not see it, I think they are planning to air it again... so if you can catch it, it is an incredible story.
OF course, we lost Michael Jackson, Billy Mays (Mr. Oxyclean himself), and several other "famous" people over the past 7 to 10 days.
Here is the information below about the URL's for the American Pain Foundation, and for the petitions....
I urge you to go to this URL and add your name to the petition. Actually I have one on Change.org and one on Care2! This is an extremely serious situation and if you have kept up with the news you have already seen they are considering making changes to all types of over the counter and prescription pain medications!
For anyone with horrid Chronic Pain and Illness this would be a night terror you live in forever! This could mean you not being able to get your proper pain medications, it means putting a strain on our good pain management specialists, and potentially ruin Chronic Pain Patients quality of life, possibly lose their jobs due to the pain, harm family life and relationships, and make many of us have no quality of life.
PLease see these two URLs:
For more information about this situation and a better understanding of what the FDA is trying to do is on the American Pain Foundations Website. Their URL is:
The Pain Foundations website is one with the latest information on all types of things related to Chronic Pain and Illness. You will find it very informative for everything from the latest research, medications, government related issues, possible bills going through the Senate and House, plus so much more.
Have a wonderful July 4th, be safe... and I hope pain free....
Rhia
by the way... those of you that have been on or are on the Methotrexate, how long did it take for you to notice a difference, if at all? What kinds of side effects, if any did you experience? What is your dosage? Are you or did you take Prednisone with it, or by itself? Plus if you think you know something about the medications, or anything else in regard to the Lupus, please post here or email me.
By the way, for patients with a New Lupus diagnosis, or if you have a family member that may not understand just how any of the autoimmune illnesses effect us... I just read a wonderful book. It is geared for someone newly diagnosed, and the first year of having Lupus. Even though I have read an enormous amount of information on line, etc... this book really helped me learn several things I did not know. It is written by a woman that spent between 10 and 15 years of doctor after doctor, medication after medication, test after test, diagnosis after diagnosis... before she found a doctor who figured it out.
The name of the book is:
"The First year of Lupus" (A Patient-Expert Walks you Through Everything you need to do and Learn).
The authors name is Nancy C. Hanger.
She also goes into things such as overlapping autoimmune issues, from Sjogrens' to Fibromyalgia.
I close for now in wishing everyone is healthy and having a wonderful Summer...
My thoughts are with each of you.... Rhia
Monday, June 15, 2009
A long winded post as I turn another page in my life..
sMy Dear Friend.... (some of this is about a group I have on the Care 2 website.) So, if pieces of this do not make sense, you will know it has to do with my Power over Chronic Pain and Illness group there... if you care 2 (now that was a play on words) :) know about Care2, the petitions, the news there, the network of incredible people... let me know and I will send you a link... there are thousands, millions of people on there daily trying to make a difference in all aspects of life for everyone....
Here goes.... thanks in advance for reading this... my best to each of you... you are a huge part of my inspiration and life....
Happy Monday and Good Week to everyone. I have been contemplating some things over the past three weeks or so, and am now down to making my decisions and moving forth with a couple of things I feel I am compelled to do, in order to truly feel I am making a difference in my own way.
Many of you already know I am a strong voice to try and help get laws changed, get Chronic Pain and Illness helped out with new research, with new laws, with proper training of patients, caretakers, doctors, and all involved. I am trying to debunk the "myth" in those with Chronic Pain. We are NOT a bunch of "drug-seeking" low lifes, that frequent doctors and ER's just to get "High". The majority of those like myself with Chronic Daily Pain, and Chronic Illness, just want our medications, we do not want to haggle over getting them with the insurance companies, with doctors, with the pharmacies, and with stupid laws that tend to make us look like we are horrible, terrible individuals. Thus much more needs to be done about the entire medical and health situation of all, but moreover, all of the stigma of having Chronic Pain needs to get reeled in. Yes, there are those that "abuse" the system. There are those that are not in pain that do go to doctors, go to the ER's and so forth for the wrong reasons. Yet, staticists show the numbers of "abusers" are extremely low, yet millions of people try and cope with their daily life, in horrible, excruiating pain, that harms their jobs, their relationhsips, families, and leaves them with little or no quality of life.
I am also an avid voice Against Domestic Violence, and Violence against Women and Children.. well honestly violence of any kind... but I stood in the fires of Domestic Violenc for far too long in my life... I was one of the fortunate ones, that did finally get out, but the scars in my mind, and on my heart, still remain at times.
Due to my Chronic Illness with Lupus, and Mixed Connective Tissue disorder, I also am an activist to get much more done about these life altering diseases. There has really not been any quality of studies done on Lupus in 40 years! You will read things here and there, but even though the rise of Autoimmune Diseases is rapidly increasing, we are almost in the stone ages in some ways when it comes to these illnesses (Diabetes 1, Multiple Sclerosis, Sjogren's, Lupus, Mixed Connective Tissue Disorder, and there are literally 100's more), and even my own Rheumatologist will admit, there is still so much not known about these illnesses and disorders. I just read an article about another "new" autoimmune disorder that children are born with, and it can affect them as quickly as after they are two weeks old.
Many of the autoimmune illnesses, are NOT that your immune system is "failing" and not working. Actually, like Lupus, my autoimmune system is overworking to the point my own cells are attacking themselves. Medications are few, and the majority of them carry side effects that over years can be worse than the disorders themselves. Corti-Steriods such as Prednisone is a huge one. It is almost like a miracle drug, when I have a Lupus "flare" yet the long term side effects can be awful. We have made much progress in the realms of Rheumatoid Arthritis, so that is great news. There is much research, many more new medications, and effective treatments to help deal with the daily symptoms of RA. Yet, as I said we lack much when it comes to many of the other autoimmune disorders.
Some of you also know that I am a writer and poet, "in heart". I have felt that my "mission" here on Earth since about the age of 13, is to touch others, and help them through life altering situations, by my poetry and writing. I was blessed with a wonderful gift, and I have tried not to allow it to go to the wayside. Yet, there are times in my life, my own "muse" per se, gets in the background, and I get caught up in other things of life.
I have been contemplating for years now, about writing a book or books. I even submitted many of my thousands of poems to publishers, and do have some that are published at a couple of sites online. I have been told my many, that my writing, the compassion and empathy that shines through my writing, and how I touch some is incredible. I only know and say this not to be patting myself on the back, but rather I know this, due to those that write me and tell me just how much my words encourage and help them. I even had one couple ask permission to read one of my poems at their wedding.
About 6 months ago, after having a long dry spell of not writing much as far as daily journaling etc., I made a vow to myself, that no matter what was going on, how I felt physically, how busy or not busy life was, that I would write daily, even if was junk.
To get to the point before running out of room, I am now making the desicion to split my "time", possibly do away now for some things I am doing online daily, and put the majority of my mind, heart, soul and time into writing my first book. I have contemplated what type of book I would write. Yet, from what others have said to me, along with my own husband & family pushing me, I will be writing my own life journey, through the abuse, the illnesses, the pain & suffering... tell my story, in the hopes that if I touch one persons heart, my "job" here on Earth shall be completed.
I am telling each of you this for a couple of reasons. First, I ask each of you to keep my in your thoughts and prayers, as I take a trip down memory lane. Some good, yet some not so good. I know there will be an outpour of emotions for me, as I tread through my heart & head. I also am having to choose what I will put on the backburner during this time. I don't know if it will take me weeks, months, or a year to write.
I have written since I was 13, yet I have no idea of how much time I will need to finish the book. I am also already looking into how to get it out to the public. I may try and send it out to publishers, but more than likely, I will try the self-publishing route. There are some really good self-publishing companies now, and they help out with promotion, and so much more. The expense varies, but I could save up the money to go with a self-publishing situation.
Here is where my main point of telling you this comes in. I am going to have to as I said in the first post at the top, put some of my efforts, causes, and pieces of life, kind of on hold during this time. I do know I will need to really focus much of my effort into the book itself, so that means less time on my blogs, websites, activist actions, my group here, and so forth. I really am having a difficult time with the entire "time" issue. I also have my own health problems that I never know how I will feel from one moment to the next. I can be fine and in a matter of hours, be in a full blown Lupus Migraine, be totally and completely fatigued and in a Lupus "flare"... plus a growing list of new symptoms that continue to crop up weekly it seems. I, along with my doctors, try and say it is all about the Lupus that is causing issues, yet a part of me feels there could be much more going on, other than the Lupus itself. Yet the symptoms mimic so many other illnesses, so I never really know.
One thing I know I will continue to work on, is my group here, Power Over Chronic Pain and Illness. I would love to have a couple of "co-hosts" that could say hello to new members, post information about illness, pain, and other subjects such as Domestic Violence.... and as you all know, I tend to discuss whatever is on my heart thus it could be anything from politics to gardening
So, if you feel like you might want to help me out here at Care2, with my ongoing group, I would love to hear from you. The group is relatively small now, but I would love to see it grow also. Yet, if I quit actively being here, I know for a fact, it would dwindle and be gone. Tis the life of being actively online... things are so lightining fast when it comes to blogs, groups, the internet, and technology. I also have a couple of other projects, other than being online, from quilting and crocheting, to our new garden, and all of my recent houseplant family I have purchased. Each of those things take up quite a bit of my time daily. Watering, feeding, keeping bugs away, and all that comes with having real houseplants, and gardens, plus daily errands, bills to pay, laundry to do, shopping, cooking, cleaning... darned I am tired just thinking about it.
As of yesterday, I got my software in order that will help me in organizing what I need for the book. Characters, chapters, thoughts, and all that I will need to get very organized first, the software helps with that. From there, then the actual book writing begins. So, my first things is deciding what I have to leave off my schedule, how long per day I will write (waxing and waning depending upon my health, doctors appts, and such)... then I have lots to learn about this book writing software. It is extremely detailed, and has lots to offer, yet it will also be a huge learning experience, to understand how I can use it to actually get my book completed.
I will tell you, my time will be limited here. Rather than spending 3 hours plus here daily with all of your incredibly emails, cards, posts and so forth, I am not disappearing, but if I happen not to answer an email, post or something for a day or two, you can be sure, I have read it, or will, but I may be a little slower in answering. I probably will hand some of the gardening, watering and such over to my husband. I will not be able to spend as much time keeping up with all of the petitions, causes and so forth, but more focus on just a couple, more about Health Care issues, and Domestic Violence. I also intend on keeping my group here for now, yet my "Myspace" and Facebook pages, may not get as much updating of information as they do now. Plus I have a couple of Yahoo groups I am a member of, and I will put those kind of on hold. I intend on telling everyone that I email etc. about my intentions. I don't want to lose any friends throughout this, so I want all to know my plans.
As I start to learn this software, pick and choose my times for activities, decide what to take off the stove for now, and so one, I ask each of you to please post or email me with suggestions, tips, what you see as something I could benefit from, help me get organized as far as my causes and times... and the book... and anything you feel that I probably have not throught about... that would help with time and so forth....
LOL, as I think about what I am writing here, I have to wonder how the heck will I fit everything in, even though I am cutting back things. I am sure as I begin the book itself, all will fall into place... I will fall into pace.. and even though it may never be published... it is two fold for me. I am encouraged by many of you, my family, and others that I can do this, and I do have something to say, that could help others.... and then I can prove to myself, I am capable of writing an entire book. It may not be an awesome book, but I can write it... start to finish... and learn a great deal about myself, life, and writing in the process.
I close this for now, since it is already a small novelette... in asking again, for your thoughts and prayers as I begin this endeavor, for any suggestions you may have, if you care to help on my group, please let me know... anything you feel might benefit this cause will be so incredibly appreciated.
Thanks again... and please keep in touch.... Rhia
"We can judge the heart of a man by his treatment of animals."
- Immanuel Kant, German philosopher
Here goes.... thanks in advance for reading this... my best to each of you... you are a huge part of my inspiration and life....
Happy Monday and Good Week to everyone. I have been contemplating some things over the past three weeks or so, and am now down to making my decisions and moving forth with a couple of things I feel I am compelled to do, in order to truly feel I am making a difference in my own way.
Many of you already know I am a strong voice to try and help get laws changed, get Chronic Pain and Illness helped out with new research, with new laws, with proper training of patients, caretakers, doctors, and all involved. I am trying to debunk the "myth" in those with Chronic Pain. We are NOT a bunch of "drug-seeking" low lifes, that frequent doctors and ER's just to get "High". The majority of those like myself with Chronic Daily Pain, and Chronic Illness, just want our medications, we do not want to haggle over getting them with the insurance companies, with doctors, with the pharmacies, and with stupid laws that tend to make us look like we are horrible, terrible individuals. Thus much more needs to be done about the entire medical and health situation of all, but moreover, all of the stigma of having Chronic Pain needs to get reeled in. Yes, there are those that "abuse" the system. There are those that are not in pain that do go to doctors, go to the ER's and so forth for the wrong reasons. Yet, staticists show the numbers of "abusers" are extremely low, yet millions of people try and cope with their daily life, in horrible, excruiating pain, that harms their jobs, their relationhsips, families, and leaves them with little or no quality of life.
I am also an avid voice Against Domestic Violence, and Violence against Women and Children.. well honestly violence of any kind... but I stood in the fires of Domestic Violenc for far too long in my life... I was one of the fortunate ones, that did finally get out, but the scars in my mind, and on my heart, still remain at times.
Due to my Chronic Illness with Lupus, and Mixed Connective Tissue disorder, I also am an activist to get much more done about these life altering diseases. There has really not been any quality of studies done on Lupus in 40 years! You will read things here and there, but even though the rise of Autoimmune Diseases is rapidly increasing, we are almost in the stone ages in some ways when it comes to these illnesses (Diabetes 1, Multiple Sclerosis, Sjogren's, Lupus, Mixed Connective Tissue Disorder, and there are literally 100's more), and even my own Rheumatologist will admit, there is still so much not known about these illnesses and disorders. I just read an article about another "new" autoimmune disorder that children are born with, and it can affect them as quickly as after they are two weeks old.
Many of the autoimmune illnesses, are NOT that your immune system is "failing" and not working. Actually, like Lupus, my autoimmune system is overworking to the point my own cells are attacking themselves. Medications are few, and the majority of them carry side effects that over years can be worse than the disorders themselves. Corti-Steriods such as Prednisone is a huge one. It is almost like a miracle drug, when I have a Lupus "flare" yet the long term side effects can be awful. We have made much progress in the realms of Rheumatoid Arthritis, so that is great news. There is much research, many more new medications, and effective treatments to help deal with the daily symptoms of RA. Yet, as I said we lack much when it comes to many of the other autoimmune disorders.
Some of you also know that I am a writer and poet, "in heart". I have felt that my "mission" here on Earth since about the age of 13, is to touch others, and help them through life altering situations, by my poetry and writing. I was blessed with a wonderful gift, and I have tried not to allow it to go to the wayside. Yet, there are times in my life, my own "muse" per se, gets in the background, and I get caught up in other things of life.
I have been contemplating for years now, about writing a book or books. I even submitted many of my thousands of poems to publishers, and do have some that are published at a couple of sites online. I have been told my many, that my writing, the compassion and empathy that shines through my writing, and how I touch some is incredible. I only know and say this not to be patting myself on the back, but rather I know this, due to those that write me and tell me just how much my words encourage and help them. I even had one couple ask permission to read one of my poems at their wedding.
About 6 months ago, after having a long dry spell of not writing much as far as daily journaling etc., I made a vow to myself, that no matter what was going on, how I felt physically, how busy or not busy life was, that I would write daily, even if was junk.
To get to the point before running out of room, I am now making the desicion to split my "time", possibly do away now for some things I am doing online daily, and put the majority of my mind, heart, soul and time into writing my first book. I have contemplated what type of book I would write. Yet, from what others have said to me, along with my own husband & family pushing me, I will be writing my own life journey, through the abuse, the illnesses, the pain & suffering... tell my story, in the hopes that if I touch one persons heart, my "job" here on Earth shall be completed.
I am telling each of you this for a couple of reasons. First, I ask each of you to keep my in your thoughts and prayers, as I take a trip down memory lane. Some good, yet some not so good. I know there will be an outpour of emotions for me, as I tread through my heart & head. I also am having to choose what I will put on the backburner during this time. I don't know if it will take me weeks, months, or a year to write.
I have written since I was 13, yet I have no idea of how much time I will need to finish the book. I am also already looking into how to get it out to the public. I may try and send it out to publishers, but more than likely, I will try the self-publishing route. There are some really good self-publishing companies now, and they help out with promotion, and so much more. The expense varies, but I could save up the money to go with a self-publishing situation.
Here is where my main point of telling you this comes in. I am going to have to as I said in the first post at the top, put some of my efforts, causes, and pieces of life, kind of on hold during this time. I do know I will need to really focus much of my effort into the book itself, so that means less time on my blogs, websites, activist actions, my group here, and so forth. I really am having a difficult time with the entire "time" issue. I also have my own health problems that I never know how I will feel from one moment to the next. I can be fine and in a matter of hours, be in a full blown Lupus Migraine, be totally and completely fatigued and in a Lupus "flare"... plus a growing list of new symptoms that continue to crop up weekly it seems. I, along with my doctors, try and say it is all about the Lupus that is causing issues, yet a part of me feels there could be much more going on, other than the Lupus itself. Yet the symptoms mimic so many other illnesses, so I never really know.
One thing I know I will continue to work on, is my group here, Power Over Chronic Pain and Illness. I would love to have a couple of "co-hosts" that could say hello to new members, post information about illness, pain, and other subjects such as Domestic Violence.... and as you all know, I tend to discuss whatever is on my heart thus it could be anything from politics to gardening
So, if you feel like you might want to help me out here at Care2, with my ongoing group, I would love to hear from you. The group is relatively small now, but I would love to see it grow also. Yet, if I quit actively being here, I know for a fact, it would dwindle and be gone. Tis the life of being actively online... things are so lightining fast when it comes to blogs, groups, the internet, and technology. I also have a couple of other projects, other than being online, from quilting and crocheting, to our new garden, and all of my recent houseplant family I have purchased. Each of those things take up quite a bit of my time daily. Watering, feeding, keeping bugs away, and all that comes with having real houseplants, and gardens, plus daily errands, bills to pay, laundry to do, shopping, cooking, cleaning... darned I am tired just thinking about it.
As of yesterday, I got my software in order that will help me in organizing what I need for the book. Characters, chapters, thoughts, and all that I will need to get very organized first, the software helps with that. From there, then the actual book writing begins. So, my first things is deciding what I have to leave off my schedule, how long per day I will write (waxing and waning depending upon my health, doctors appts, and such)... then I have lots to learn about this book writing software. It is extremely detailed, and has lots to offer, yet it will also be a huge learning experience, to understand how I can use it to actually get my book completed.
I will tell you, my time will be limited here. Rather than spending 3 hours plus here daily with all of your incredibly emails, cards, posts and so forth, I am not disappearing, but if I happen not to answer an email, post or something for a day or two, you can be sure, I have read it, or will, but I may be a little slower in answering. I probably will hand some of the gardening, watering and such over to my husband. I will not be able to spend as much time keeping up with all of the petitions, causes and so forth, but more focus on just a couple, more about Health Care issues, and Domestic Violence. I also intend on keeping my group here for now, yet my "Myspace" and Facebook pages, may not get as much updating of information as they do now. Plus I have a couple of Yahoo groups I am a member of, and I will put those kind of on hold. I intend on telling everyone that I email etc. about my intentions. I don't want to lose any friends throughout this, so I want all to know my plans.
As I start to learn this software, pick and choose my times for activities, decide what to take off the stove for now, and so one, I ask each of you to please post or email me with suggestions, tips, what you see as something I could benefit from, help me get organized as far as my causes and times... and the book... and anything you feel that I probably have not throught about... that would help with time and so forth....
LOL, as I think about what I am writing here, I have to wonder how the heck will I fit everything in, even though I am cutting back things. I am sure as I begin the book itself, all will fall into place... I will fall into pace.. and even though it may never be published... it is two fold for me. I am encouraged by many of you, my family, and others that I can do this, and I do have something to say, that could help others.... and then I can prove to myself, I am capable of writing an entire book. It may not be an awesome book, but I can write it... start to finish... and learn a great deal about myself, life, and writing in the process.
I close this for now, since it is already a small novelette... in asking again, for your thoughts and prayers as I begin this endeavor, for any suggestions you may have, if you care to help on my group, please let me know... anything you feel might benefit this cause will be so incredibly appreciated.
Thanks again... and please keep in touch.... Rhia
"We can judge the heart of a man by his treatment of animals."
- Immanuel Kant, German philosopher
Tuesday, June 9, 2009
URGENT ACTION NEEDED! FDA TO POSSBILY BAN SOME PAIN MEDICATIONS!
Please read the letter at the bottom I received from the American Pain Foundation, along with my own letter that I have posted, emailed to the FDA, my Congress man, my Senators, and the President!
http://www.painfoundation.org/ (The front page has the information about it)
I just read a disturbing email from the American Pain Foundation. I am a chronic
pain and chronic illness patient, and have been since I was 17. I began with
horrible migraines that plagued my life several times a month. For years, I got
only a short acting medication, or had to go to the emergency room to get
treatment. That got expensive, was not the real answer, and almost destroyed my
marriage, my job and my quality of life. I put up with that for years. Then at
40, I began to have degenerative joint disease. My joints quickly began to
disentegrate to the point, I have had to have several knee surgeries, including
two total knee replacements, 2 blow surgeries (both need it again, shoulder
surgery on both shoulders (the last was my right one, that has extensive issues,
and may need to be replaced soon also. Plus wrist surgery, now my other wrist
and both thumbs need surgery. I also have Mixed Connective Tissue Disease/Lupus
and Sjogren's. Without my pain doctors help, my quality of life would be none. I
lost all of my jobs due to massive pain, due to having to miss so much work. I
finally got my complete disability after over 3 years, appeals and a hearing.
The pain most days would be almost unbearable without my extended release
medications. With those given properly, and I am extremely monitored by a very
good pain specialist, plus my rheumatologist, my PCP, and my orthopedic
physician, all know about my pain specialist, and they all work together. I
cannot take many medications like NSAID's due to a heart attack at 40. I cannot
take any of the ergot medications for migraines due to my heart attack, and
being allergic to them. Without my proper daily extended release pain
medications, I would be basically unable to even get out of bed, much less have
my life back as I do now. I realize some abuse the system. But, why should I, as
a true patient that does really have health issues that cause so much pain, be
punished because of the abusers? If you take some of those extended release
medications off the market, I would be worthless, as far as my family, my
husband and my life. I have tried over the years every new medication that comes
on the market, yet I either cannot take them due to my other health problems,
such as the heart attack, GERD, kidney issues, high blood pressure and TIA's. I
am only 49 years old and hope to continue to have my life back from the
excruiating, daily chronic pain I had to endure for so many years of my life,
until finding a good specialist, to help me with monitoring and extended release
pain medication. Without control over my horrible pain, and without being able
to continue my medication as it is, I feel suicide could be an issue for not
just myself, but millions of others, who just could not withstand knowing they
would have to suffer horrible pain, have no job, possibly lose their spouses,
and their families, I fear many of us would give up and not be able to continue
on with life.
It is fine to do something about those who abuse the system. But there are
thousands of people like myself, who do what our doctors say, who take our
medications as they should be, and we do so in order to have our lives back. We
are never free of pain completely, but those medications give us enough relief
so we can try and half way life our lives normally.
I urge you to take my case, as well as the millions of chronic pain patients
into deep consideration. You would be taking people away from their jobs, their
families, their spouses, and taking away their quality of life.
I realize we may need more education about how to use medications properly for
some, how to store them properly, away from anyone but the patient, so they can
control the medications and keep them out of the hands of others.
Taking away the extended pain medications would drive the costs of emergency
room visits, doctors visits, and other medical facilities up by millions,
because people would flock to the ER, their doctors, and other clinics for pain
relief. Those visits would be often by millions without their proper extended
release medications. Short relief pain medications are potentially more harmful
due to the Tylenol in them, or NSAIDs in them. They can cause things like liver
failure, they do not work for chronic pain, and many people are unable to take
them to due stomach problems like GERD.
This type of action would also cause patients with true chronic pain issues to
have a stigma associated with them, and then those like myself, who are truly in
horrible daily pain, would not be able to get proper, and immediate treatment
with medications that control pain properly.
Without my good physician, who prescribes the proper extended release
medication, and monitors me, plus I have been well educated about opioid
medications, I basically would be useless, not able to run an errand, help clean
my home, or have any kind of quality of life. I too could lose my husband, and
others around me, just due to not being able to live my life, without being in
bed or on the sofa. I finally found relief from the intolerable pain that
consumed me for years. I urge you to leave things as they are as far as the
medications that help so many.
My best regards, Pam Steele
Here is the letter from the Pain Foundation:
APF URGES YOU TO READ THIS ALERT AND TAKE ACTION TODAY!
To: All individuals and organizations who care about access to pain care in America.
URGENT CALL TO ACTION!
The Federal Drug Administration (FDA) may remove important pain medications from the market or couldvery likely limit access to certain pain medications that are currently legally prescribed to millions of Americans suffering from pain.
The FDA needs to hear how vital access to these medications is to people with pain and what tragic results could occur if they were denied access to these medications or if additional barriers were created making access more difficult for people who are legally prescribed these medications.
ACTION REQUESTED
Send a letter to the FDA sharing your story about how their decisions would impact you or your loved one. The FDA MUST receive your letters by Tuesday, June 30th, so don’t delay.
Please review the following to assist in your letter writing and to provide further information on the issue:
Frequently Asked Questions
Risk Evaluation and Mitigation Strategy (REMS) Consumer Talking Points
American Pain Foundation's Position Statement on REMS
American Pain Foundation’s Recommendations on REMS
Click here to go directly to the FDA comment submission page to submit your letter electronically or mail your letters to:
Division of Dockets Management (HFA305)
Food and Drug Administration
5630 Fishers Lane, Room 1061
Rockville, MD 20852
Please Note: All letters sent electronically or through the mail must clearly include the following information at the top of your letter: Docket No. FDA-2009-N-0143. Please send a copy of your letter toadvocacy@painfoundation.org so we can also have an opportunity to hear your commentary.
Testimony of Pain Advocates at FDA Hearing, May 27th and 28th. These testimonies may also help you write your letter.
Mark Maginn
Carolyn Noel
Teresa Shaffer
Mary Vargas
FDA’s REMS Information
THANK YOU FOR SUBMITTING YOUR LETTER AND ALLOWING YOUR VOICE TO BE HEARD!
Sincerely,
American Pain Foundation
http://www.painfoundation.org/ (The front page has the information about it)
I just read a disturbing email from the American Pain Foundation. I am a chronic
pain and chronic illness patient, and have been since I was 17. I began with
horrible migraines that plagued my life several times a month. For years, I got
only a short acting medication, or had to go to the emergency room to get
treatment. That got expensive, was not the real answer, and almost destroyed my
marriage, my job and my quality of life. I put up with that for years. Then at
40, I began to have degenerative joint disease. My joints quickly began to
disentegrate to the point, I have had to have several knee surgeries, including
two total knee replacements, 2 blow surgeries (both need it again, shoulder
surgery on both shoulders (the last was my right one, that has extensive issues,
and may need to be replaced soon also. Plus wrist surgery, now my other wrist
and both thumbs need surgery. I also have Mixed Connective Tissue Disease/Lupus
and Sjogren's. Without my pain doctors help, my quality of life would be none. I
lost all of my jobs due to massive pain, due to having to miss so much work. I
finally got my complete disability after over 3 years, appeals and a hearing.
The pain most days would be almost unbearable without my extended release
medications. With those given properly, and I am extremely monitored by a very
good pain specialist, plus my rheumatologist, my PCP, and my orthopedic
physician, all know about my pain specialist, and they all work together. I
cannot take many medications like NSAID's due to a heart attack at 40. I cannot
take any of the ergot medications for migraines due to my heart attack, and
being allergic to them. Without my proper daily extended release pain
medications, I would be basically unable to even get out of bed, much less have
my life back as I do now. I realize some abuse the system. But, why should I, as
a true patient that does really have health issues that cause so much pain, be
punished because of the abusers? If you take some of those extended release
medications off the market, I would be worthless, as far as my family, my
husband and my life. I have tried over the years every new medication that comes
on the market, yet I either cannot take them due to my other health problems,
such as the heart attack, GERD, kidney issues, high blood pressure and TIA's. I
am only 49 years old and hope to continue to have my life back from the
excruiating, daily chronic pain I had to endure for so many years of my life,
until finding a good specialist, to help me with monitoring and extended release
pain medication. Without control over my horrible pain, and without being able
to continue my medication as it is, I feel suicide could be an issue for not
just myself, but millions of others, who just could not withstand knowing they
would have to suffer horrible pain, have no job, possibly lose their spouses,
and their families, I fear many of us would give up and not be able to continue
on with life.
It is fine to do something about those who abuse the system. But there are
thousands of people like myself, who do what our doctors say, who take our
medications as they should be, and we do so in order to have our lives back. We
are never free of pain completely, but those medications give us enough relief
so we can try and half way life our lives normally.
I urge you to take my case, as well as the millions of chronic pain patients
into deep consideration. You would be taking people away from their jobs, their
families, their spouses, and taking away their quality of life.
I realize we may need more education about how to use medications properly for
some, how to store them properly, away from anyone but the patient, so they can
control the medications and keep them out of the hands of others.
Taking away the extended pain medications would drive the costs of emergency
room visits, doctors visits, and other medical facilities up by millions,
because people would flock to the ER, their doctors, and other clinics for pain
relief. Those visits would be often by millions without their proper extended
release medications. Short relief pain medications are potentially more harmful
due to the Tylenol in them, or NSAIDs in them. They can cause things like liver
failure, they do not work for chronic pain, and many people are unable to take
them to due stomach problems like GERD.
This type of action would also cause patients with true chronic pain issues to
have a stigma associated with them, and then those like myself, who are truly in
horrible daily pain, would not be able to get proper, and immediate treatment
with medications that control pain properly.
Without my good physician, who prescribes the proper extended release
medication, and monitors me, plus I have been well educated about opioid
medications, I basically would be useless, not able to run an errand, help clean
my home, or have any kind of quality of life. I too could lose my husband, and
others around me, just due to not being able to live my life, without being in
bed or on the sofa. I finally found relief from the intolerable pain that
consumed me for years. I urge you to leave things as they are as far as the
medications that help so many.
My best regards, Pam Steele
Here is the letter from the Pain Foundation:
APF URGES YOU TO READ THIS ALERT AND TAKE ACTION TODAY!
To: All individuals and organizations who care about access to pain care in America.
URGENT CALL TO ACTION!
The Federal Drug Administration (FDA) may remove important pain medications from the market or couldvery likely limit access to certain pain medications that are currently legally prescribed to millions of Americans suffering from pain.
The FDA needs to hear how vital access to these medications is to people with pain and what tragic results could occur if they were denied access to these medications or if additional barriers were created making access more difficult for people who are legally prescribed these medications.
ACTION REQUESTED
Send a letter to the FDA sharing your story about how their decisions would impact you or your loved one. The FDA MUST receive your letters by Tuesday, June 30th, so don’t delay.
Please review the following to assist in your letter writing and to provide further information on the issue:
Frequently Asked Questions
Risk Evaluation and Mitigation Strategy (REMS) Consumer Talking Points
American Pain Foundation's Position Statement on REMS
American Pain Foundation’s Recommendations on REMS
Click here to go directly to the FDA comment submission page to submit your letter electronically or mail your letters to:
Division of Dockets Management (HFA305)
Food and Drug Administration
5630 Fishers Lane, Room 1061
Rockville, MD 20852
Please Note: All letters sent electronically or through the mail must clearly include the following information at the top of your letter: Docket No. FDA-2009-N-0143. Please send a copy of your letter toadvocacy@painfoundation.org so we can also have an opportunity to hear your commentary.
Testimony of Pain Advocates at FDA Hearing, May 27th and 28th. These testimonies may also help you write your letter.
Mark Maginn
Carolyn Noel
Teresa Shaffer
Mary Vargas
FDA’s REMS Information
THANK YOU FOR SUBMITTING YOUR LETTER AND ALLOWING YOUR VOICE TO BE HEARD!
Sincerely,
American Pain Foundation
Monday, June 8, 2009
Climate and Clean Energy Petition - Please sign by Wednesday! From Moveon.org
Dear MoveOn member,
It's 2009. Democrats have ample majorities in both houses of Congress. President Obama campaigned on the promise to tackle climate change and boost our economy by investing in clean energy.
So why on earth is Congress considering an energy bill that:
Would weaken current law, repealing President Obama's authority to crack down on dirty power plants,1 and
Doesn't actually require the creation of new solar or wind power? (The Union of Concerned Scientists has concluded that the clean energy standards won't make power companies produce more clean energy than is already in the works.)2
Why? Because Big Oil and Coal have teamed up with conservatives in both parties, and they've been successful in weakening the bill.
These are major flaws, but the bill has a lot of really good provisions, too. The key thing is that Congress can still strengthen it—if there's a public outcry. But we don't have much time: Congress is expected to vote on this bill in less than three weeks.
Can you sign this petition to Representative Joe Barton today? Eighty thousand MoveOn members have already signed. We need to double the number of signatures by Wednesday—that means we need 3 more signatures in Ennis. MoveOn members will personally deliver this petition to many congressional offices the next day. Click here to add your name:
http://pol.moveon.org/cleanenergy/o.pl?id=16315-7178190-thA2_Sx&t=4
The petition says: "We need a stronger energy bill to fulfill Obama's vision of a clean energy economy. Congress should strengthen the clean energy standards and restore Obama's authority to crack down on dirty coal plants."
Congress must change the energy bill to require power companies to produce more clean energy for America. Wind and solar create more than twice as many jobs as coal and oil.3 And Congress needs to hold polluters accountable by restoring President Obama's current authority through the EPA to crack down on global warming pollution from power plants.
The Union of Concerned Scientists analysis finds that the current version of the clean energy standard "won't require utilities to use any more renewable electricity than...would be generated as a result of state renewable electricity standards already in place and the recently enacted stimulus package."4
If we just sit back, we'll miss our chance to go big with wind and solar—and we'll lose the jobs those industries would create. Big Oil and Coal will keep getting billions of dollars in taxpayer subsidies. And President Obama will be powerless to stop more than 100 new dirty coal plants, which will crowd out the clean energy growth we need to boost our economy.5
There are some good parts of the bill, but these are significant problems. As the Sierra Club's Carl Pope writes, the bill establishes strong long-term goals for cutting carbon pollution and very strong energy-efficiency investments, "but in its present form, it won't do all that's needed. The oil, coal, and dirty-utility interests...were able to prevent enactment of President Obama's much bolder vision...Yes, they will try to kill the green-jobs recovery in its cradle, and yes, they will try to block our clean-energy future."6
Please urge Rep. Barton to fight for a stronger energy bill. Clicking here will add your name to the petition:
http://pol.moveon.org/cleanenergy/o.pl?id=16315-7178190-thA2_Sx&t=5
Thanks for all you do.
–Anna, Michael, Joan, Noah and the rest of the team
Sources:
1. "Bill Needs Strengthening to Guarantee Necessary Carbon Reductions, New Green Jobs and Consumer Benefits, Science Group Says," Union of Concerned Scientists, May 14, 2009
http://www.moveon.org/r?r=51475&id=16315-7178190-thA2_Sx&t=6
2. "EPA urged to act on climate, not wait for Congress," Associated Press, May 18, 2009
http://www.moveon.org/r?r=51479&id=16315-7178190-thA2_Sx&t=7
"American Clean Energy and Security Act of 2009," Library of Congress, May 15, 2009
http://www.moveon.org/r?r=51482&id=16315-7178190-thA2_Sx&t=8
3. "Green Recovery: A Program to Create Good Jobs and Start Building a Low-Carbon Economy," Political Economy Research Institute at the University of Massachusetts-Amherst, September 2008
http://www.peri.umass.edu/green_recovery/
4. "Bill Needs Strengthening to Guarantee Necessary Carbon Reductions, New Green Jobs and Consumer Benefits, Science Group Says," Union of Concerned Scientists, May 14, 2009
http://www.moveon.org/r?r=51475&id=16315-7178190-thA2_Sx&t=9
5. "Stopping the Coal Rush," Sierra Club
http://www.moveon.org/r?r=51483&id=16315-7178190-thA2_Sx&t=10
6. "So How Good Is This Climate Bill, Anyhow?" Sierra Club, May 22, 2009
http://www.moveon.org/r?r=51478&id=16315-7178190-thA2_Sx&t=11
Want to support our work? We're entirely funded by our 5 million members—no corporate contributions, no big checks from CEOs. And our tiny staff ensures that small contributions go a long way. Chip in here.
It's 2009. Democrats have ample majorities in both houses of Congress. President Obama campaigned on the promise to tackle climate change and boost our economy by investing in clean energy.
So why on earth is Congress considering an energy bill that:
Would weaken current law, repealing President Obama's authority to crack down on dirty power plants,1 and
Doesn't actually require the creation of new solar or wind power? (The Union of Concerned Scientists has concluded that the clean energy standards won't make power companies produce more clean energy than is already in the works.)2
Why? Because Big Oil and Coal have teamed up with conservatives in both parties, and they've been successful in weakening the bill.
These are major flaws, but the bill has a lot of really good provisions, too. The key thing is that Congress can still strengthen it—if there's a public outcry. But we don't have much time: Congress is expected to vote on this bill in less than three weeks.
Can you sign this petition to Representative Joe Barton today? Eighty thousand MoveOn members have already signed. We need to double the number of signatures by Wednesday—that means we need 3 more signatures in Ennis. MoveOn members will personally deliver this petition to many congressional offices the next day. Click here to add your name:
http://pol.moveon.org/cleanenergy/o.pl?id=16315-7178190-thA2_Sx&t=4
The petition says: "We need a stronger energy bill to fulfill Obama's vision of a clean energy economy. Congress should strengthen the clean energy standards and restore Obama's authority to crack down on dirty coal plants."
Congress must change the energy bill to require power companies to produce more clean energy for America. Wind and solar create more than twice as many jobs as coal and oil.3 And Congress needs to hold polluters accountable by restoring President Obama's current authority through the EPA to crack down on global warming pollution from power plants.
The Union of Concerned Scientists analysis finds that the current version of the clean energy standard "won't require utilities to use any more renewable electricity than...would be generated as a result of state renewable electricity standards already in place and the recently enacted stimulus package."4
If we just sit back, we'll miss our chance to go big with wind and solar—and we'll lose the jobs those industries would create. Big Oil and Coal will keep getting billions of dollars in taxpayer subsidies. And President Obama will be powerless to stop more than 100 new dirty coal plants, which will crowd out the clean energy growth we need to boost our economy.5
There are some good parts of the bill, but these are significant problems. As the Sierra Club's Carl Pope writes, the bill establishes strong long-term goals for cutting carbon pollution and very strong energy-efficiency investments, "but in its present form, it won't do all that's needed. The oil, coal, and dirty-utility interests...were able to prevent enactment of President Obama's much bolder vision...Yes, they will try to kill the green-jobs recovery in its cradle, and yes, they will try to block our clean-energy future."6
Please urge Rep. Barton to fight for a stronger energy bill. Clicking here will add your name to the petition:
http://pol.moveon.org/cleanenergy/o.pl?id=16315-7178190-thA2_Sx&t=5
Thanks for all you do.
–Anna, Michael, Joan, Noah and the rest of the team
Sources:
1. "Bill Needs Strengthening to Guarantee Necessary Carbon Reductions, New Green Jobs and Consumer Benefits, Science Group Says," Union of Concerned Scientists, May 14, 2009
http://www.moveon.org/r?r=51475&id=16315-7178190-thA2_Sx&t=6
2. "EPA urged to act on climate, not wait for Congress," Associated Press, May 18, 2009
http://www.moveon.org/r?r=51479&id=16315-7178190-thA2_Sx&t=7
"American Clean Energy and Security Act of 2009," Library of Congress, May 15, 2009
http://www.moveon.org/r?r=51482&id=16315-7178190-thA2_Sx&t=8
3. "Green Recovery: A Program to Create Good Jobs and Start Building a Low-Carbon Economy," Political Economy Research Institute at the University of Massachusetts-Amherst, September 2008
http://www.peri.umass.edu/green_recovery/
4. "Bill Needs Strengthening to Guarantee Necessary Carbon Reductions, New Green Jobs and Consumer Benefits, Science Group Says," Union of Concerned Scientists, May 14, 2009
http://www.moveon.org/r?r=51475&id=16315-7178190-thA2_Sx&t=9
5. "Stopping the Coal Rush," Sierra Club
http://www.moveon.org/r?r=51483&id=16315-7178190-thA2_Sx&t=10
6. "So How Good Is This Climate Bill, Anyhow?" Sierra Club, May 22, 2009
http://www.moveon.org/r?r=51478&id=16315-7178190-thA2_Sx&t=11
Want to support our work? We're entirely funded by our 5 million members—no corporate contributions, no big checks from CEOs. And our tiny staff ensures that small contributions go a long way. Chip in here.
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