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/

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"

This is an incredible article and is opening the doors to more medications, research, and possibly a cure for the mystery surrounding Fibromyalgia and CFS. I am elated about the news...

http://www.nytimes.com/2009/10/21/opinion/21johnson.html?pagewanted=1&tntemail1=y&emc=tnt

A Case of Chronic Denial

By HILLARY JOHNSON

Published: October 20, 2009

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.

Dr. Nancy Klimas, an immunologist at the University of Miami School of Medicine who treats AIDS and chronic fatigue syndrome, remarked in The Times last week that if given the choice she would prefer to have AIDS: “My H.I.V. patients for the most part are hale and hearty,” she said, noting that billions of dollars have been spent on AIDS research. “Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.”

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Related

Health Guide: Chronic Fatigue

Congress has appropriated money for research on chronic fatigue syndrome, too, though in far smaller amounts, but the C.D.C. has seemed unwilling to spend it productively. A decade ago, investigations by the inspector general for the Department of Health and Human Services and what was then called the General Accounting Office revealed that for years government scientists had been funneling millions meant for research on this disease into other pet projects.

As public health officials focused on psychiatric explanations, the virus apparently spread widely. In the new study, active XMRV infections were found in 3.7 percent of the healthy controls tested. Roughly the same degree of infection in healthy people has been found in the prostate research. If this is representative of the United States as a whole, then as many as 10 million Americans may carry the retrovirus.

It is estimated that more than a million Americans are seriously ill with the disease. (Not everyone infected with XMRV will necessarily get chronic fatigue syndrome — in the same way that not all of the 1.1 million Americans infected with H.I.V. will get AIDS.)

Hints that a retroviral infection might play a role in chronic fatigue syndrome have been present from the beginning. In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 chronic fatigue patients. The C.D.C. went so far as to try to replicate her effort, but refused to follow her exacting methods for finding the virus. In addition, the centers’ blood samples became contaminated, and some people at the agency said that administrators ended the research prematurely. Rather than admit any such failure, the C.D.C. publicly criticized Dr. DeFreitas’s findings.

That episode had a chilling effect on other researchers in the field, and the search for the cause was largely abandoned for 20 years.

Now, Judy Mikovits, the retrovirus expert at the Whittemore Peterson Institute, in Reno, Nev., who led the recent study, has revisited the cold case. Not surprisingly, the institute is private, created by the parents of a woman who suffers from chronic fatigue syndrome. But Dr. Mikovits collaborated with scientists at the National Cancer Institute and the Cleveland Clinic.

When she began her work on this disease in 2006, Dr. Mikovits, a 22-year veteran of the National Cancer Institute, knew little about chronic fatigue syndrome. But she was intrigued that an unusually high number of patients being followed by a Nevada doctor were suffering rare lymphomas and leukemias; at least one had died. And she was also impressed that the doctor, Dan Peterson, had built an extraordinary repository of more than 8,000 chronic fatigue syndrome tissue samples going back as far as 1984.

“My hypothesis was, ‘This is a retrovirus,’ and I was going to use that repository to find it,” Dr. Mikovits told me.

What she found was live, or replicating, XMRV in both frozen and fresh blood and plasma, as well as saliva. She has found the virus in samples going back to 1984 and in nearly all the patients who developed cancer. She expects the positivity rate will be close to 100 percent in the disease.

“It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives,” Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.

For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of “chronic fatigue syndrome” can’t come soon enough.

Hillary Johnson is the author of “Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.”

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

By Jennifer Warner
WebMD Health News

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.

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

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

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!

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)

http://www.care2.com/greenliving/7-ways-and-7-days-to-renew-your-life-2.html#comment-182129

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!

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

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:

http://www.change.org/actions/view/stop_the_fda_from_banning_er_pain_medications_for_pain_patients

http://www.thepetitionsite.com/1/help-pain-control-regulation

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:

http://www.painfoundation.org/

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