Job offer- jeopardised

After happily telling me she will provide me a reference, and asked my future employer to approach her, she now emailed me the she cannot do so without jeopardizing my job. She asked me to tell her what to write and she "might consider" it. She "has a duty" to tell my future employer " the truth", and "telling the truth will jeopardize my job".

How mean can a person be? I did not need her reference for this job- and I made it explicit. If she was going to give me a reference which will "jeopardize my chance", why did she tell me she will be very happy to provide a reference?? ?

My stand is I will be happy for her to tell the truth, the whole truth, and not partial truth. No matter what her stand is, I am in no position to influence what she says about me in my reference. That is dodgy.

What will you do, if you are in my position? Give me advice!
I have an illness, but I am coping quite well, and I already make concessions about my jobs to make sure I get a job where I am more than able to cope. Most of the time- more than 95% of the time, I can happily work 8 hours a day, or even more! I am already going for easier, lower paid jobs.

50% of rheumatoid arthritis patients give up work within ten years, says new study

Are you still in employment? How long have you been having RA?

This "headline" certainly spell trouble for RA patients who are looking for a job!
Fifty per cent of rheumatoid arthritis patients give up work within ten years, says new study A new study into the costs associated with rheumatoid arthritis (RA) has shown that many people with the disease are forced to retire early.

Researchers from Sweden published their findings in the European Journal of Health Economics.

The team found that 65 per cent of the costs associated with RA were outside the health care sector and that these included productivity losses, patient out-of-pocket costs and informal care.

The researchers also suggested that around 50 per cent of all people with RA were forced to leave their workplace and either retire or apply for a disability pension within ten years of disease onset.

"Of all the chronic diseases, rheumatoid arthritis has one of the biggest impacts on the quality of life of patients," commented Professor Josef Smolen.

"I am confident that this study will contribute to the discussion on the importance of RA from a societal perspective and not just a health care perspective.

"Patient access to good care and treatment including thorough follow-up examinations and access to innovative drug therapies, where indicated, are critical elements that will benefit all of society."

An Arthritis Research Campaign spokeswoman said: "It is very disappointing that so many RA patients have to give up work within ten years of developing the disease, despite huge advances in treatment. It may be that anti-TNF therapy, given early in the course of disease may help keep people in employment for longer, in future years."


article form ARC website
http://www.arc.org.uk/news/article/18456774

Lack of confidence

At job my interview last week, I was able to "psych" myself up. I was feeling really sick, worried about my joints etc, but I was able to "psych" myself up to be positive and upbeat, between coughs and deafening sneezes. I hardly had good sleep because I was sick, but I went in to the interview feeling that I had a chance and have to fight for it. I did not get the job offer, but I knew I put in my best and have nothing to regret.

Yet today, I am not even putting in my best to prepare for the next job interview tomorrow. Sigh. I have been feeling really tired and warm and in pain since my RA flared up again last week. I tried to lose weight so that I would look more decent at the interview. Instead, I triggered a flare. And more than a week "resting" makes me look more flabby than ever. As usual, another 1 kg of weight gain due to lack of activity.

Despite all the difficult things that have happened recently, I have been trying so hard to maintain an up beat mood. I have not been complaining about how horrible I feel, and what severe blow that is to my confidence. Here I am applying for jobs that require you to be "dynamic" and able to meet "tight deadlines", and here I am, hardly able to get out of bed before 10 am. Here I am tired, by 10 pm. Here I am trying to attend interviews, and trying to make myself look the best I could, despite another kg of flab.

But I guess the "balloon" was really deflated by people around me. Totally able bodied people telling me they cannot do this and cannot that. Totally able bodied, intelligent young people telling they have no hope of doing a long list of things. They have been telling me that they have achieved nothing, and can't achieve anything. Things are too difficult. And they regret A-Z. Life is hopeless.

Frankly, I am sick being the cheerleader. I just want to ask them to scram.

Can't they have some mercy on me? Can't they show me some mercy? Why do they need to behave this way now? Why?When I look at them, I told them"if you have no hope, what do I have??" Or perhaps they wanted to compliment me? They wanted to tell me I actually did many of their so called "the impossibles", while I was sick, tired, in pain and sometimes foggy? Life have not been fair to them? Tell me about it.

I am being totally fed up with all the men around me. Damn it. If they can't distinguish between "can't do it" and "won't do it", get out of my way. And let me use the little energy I have to prepare and do my best for tomorrow's interview. I know I am not in a state where I could do well enough to succeed. Ill prepared and all, but I just want to do my best, no matter how "hopeless" it is. So, stop telling me why the things they do are "hopeless". Stop telling me things which make me feel my efforts are even "more hopeless" than yours. Stop telling me that you can't do a good job because you don't LOVE what you do, and although you do not HATE it, you do not ENJOY it very much. I can tell you that I do not ENJOY going to work. I don't ENJOY getting out of bed early in the morning, sore all over the place, and get into that ICY car, or walk 1/2 mile in my swollen feet to the nearest station. I don't ENJOY walking when my feet are swollen, I don't ENJOY driving with painful ankles. I don't ENJOY spending 10 hours a day typing- that makes my fingers and wrist really painful-my neck and shoulders sore and painful even to light touches (that is the fibromyalgia component, FYI.). I don't ENJOY staring at the screen for a long time, cos my eyes are really dry (That is Sjogren's syndrome), I don't ENJOY long presentations too. If I am the speaker, my dry mouth becomes really uncomfortable, and people wonder why I sip water so much (if water is available). As the listener, I would squirm in my seat, because my joints would "frozen" or let out some cracking sounds. And I also don't ENJOY doing the housework, not when I am already dead tired and in pain after a long day at work.

And yet despite all the shit which is showered on to me, I am just like the little donkey. I shake my head, sigh, take a step and move on. Perhaps that is why I am surviving. I am just a little foggy brained donkey now, unlike all these intelligent people around me. They have a lot more brain cells and energy to complain than I do.

To tell or not to tell

Perhaps it is a consolation that every CV I sent out returned an interview.

However, ,I flopped at the spot where I had to account for the "gap". More than 1.5 years away from the workforce. Young professional. How do I account for that? I am bad at telling lies, but if I tell the truth... well. I have had enough of prejudice.

TO tell or not to tell?

New York Times Article: Drug Approved. Is disease real?

I saw this article which is upset many fibromyalgia patients, after reading some discussions in other blogs about it.

This is a clear example of irresponsible reporting. I can't believe that we are going "backwards" again, and this article was published in the front page of NYT.

What motivates the publication of articles which questions the "realness" of illnesses? Pharma bashing? It seems so easy for other to downplay the suffering of others. A while ago, Consumerreports.org's video about RLS has cause much unhappiness among RLS patients.

The latest report from NYT is an example of pseudo-objective, pseudo-scientific report. Some journos quote a few "experts" who cite "non-evidence" as evidence that a disease is unreal.

Forgivable? If you are a fibro patient and you have friends/neighbours saying "oh, apparently FMS is not real, it is all in your head. Did you see the article in NYT?", you will want to strangle those people who publish it.


++++++++++++++++

THE NYT article

January 14, 2008

Drug Approved. Is Disease Real?

By ALEX BERENSON

Fibromyalgia is a real disease. Or so says Pfizer in a new television advertising campaign for Lyrica, the first medicine approved to treat the pain condition, whose very existence is questioned by some doctors.

For patient advocacy groups and doctors who specialize in fibromyalgia, the Lyrica approval is a milestone. They say they hope Lyrica and two other drugs that may be approved this year will legitimize fibromyalgia, just as Prozac brought depression into the mainstream.

But other doctors — including the one who wrote the 1990 paper that defined fibromyalgia but who has since changed his mind — say that the disease does not exist and that Lyrica and the other drugs will be taken by millions of people who do not need them.

As diagnosed, fibromyalgia primarily affects middle-aged women and is characterized by chronic, widespread pain of unknown origin. Many of its sufferers are afflicted by other similarly nebulous conditions, like irritable bowel syndrome.

Because fibromyalgia patients typically do not respond to conventional painkillers like aspirin, drug makers are focusing on medicines like Lyrica that affect the brain and the perception of pain.

Advocacy groups and doctors who treat fibromyalgia estimate that 2 to 4 percent of adult Americans, as many as 10 million people, suffer from the disorder.

Those figures are sharply disputed by those doctors who do not consider fibromyalgia a medically recognizable illness and who say that diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate. Further, they warn that Lyrica’s side effects, which include severe weight gain, dizziness and edema, are very real, even if fibromyalgia is not.

Despite the controversy, the American College of Rheumatology, the Food and Drug Administration and insurers recognize fibromyalgia as a diagnosable disease. And drug companies are aggressively pursuing fibromyalgia treatments, seeing the potential for a major new market.

Hoping to follow Pfizer’s lead, two other big drug companies, Eli Lilly and Forest Laboratories, have asked the F.D.A. to let them market drugs for fibromyalgia. Approval for both is likely later this year, analysts say.

Worldwide sales of Lyrica, which is also used to treat diabetic nerve pain and seizures and which received F.D.A. approval in June for fibromyalgia, reached $1.8 billion in 2007, up 50 percent from 2006. Analysts predict sales will rise an additional 30 percent this year, helped by consumer advertising.

In November, Pfizer began a television ad campaign for Lyrica that features a middle-aged woman who appears to be reading from her diary. “Today I struggled with my fibromyalgia; I had pain all over,” she says, before turning to the camera and adding, “Fibromyalgia is a real, widespread pain condition.”

Doctors who specialize in treating fibromyalgia say that the disorder is undertreated and that its sufferers have been stigmatized as chronic complainers. The new drugs will encourage doctors to treat fibromyalgia patients, said Dr. Dan Clauw, a professor of medicine at the University of Michigan who has consulted with Pfizer, Lilly and Forest.

“What’s going to happen with fibromyalgia is going to be the exact thing that happened to depression with Prozac,” Dr. Clauw said. “These are legitimate problems that need treatments.”

Dr. Clauw said that brain scans of people who have fibromyalgia reveal differences in the way they process pain, although the doctors acknowledge that they cannot determine who will report having fibromyalgia by looking at a scan.

Lynne Matallana, president of the National Fibromyalgia Association, a patients’ advocacy group that receives some of its financing from drug companies, said the new drugs would help people accept the existence of fibromyalgia. “The day that the F.D.A. approved a drug and we had a public service announcement, my pain became real to people,” Ms. Matallana said.

Ms. Matallana said she had suffered from fibromyalgia since 1993. At one point, the pain kept her bedridden for two years, she said. Today she still has pain, but a mix of drug and nondrug treatments — as well as support from her family and her desire to run the National Fibromyalgia Association — has enabled her to improve her health, she said. She declined to say whether she takes Lyrica.

“I just got to a point where I felt, I have pain but I’m going to have to figure out how to live with it,” she said. “I absolutely still have fibromyalgia.”

But doctors who are skeptical of fibromyalgia say vague complaints of chronic pain do not add up to a disease. No biological tests exist to diagnose fibromyalgia, and the condition cannot be linked to any environmental or biological causes.

The diagnosis of fibromyalgia itself worsens the condition by encouraging people to think of themselves as sick and catalog their pain, said Dr. Nortin Hadler, a rheumatologist and professor of medicine at the University of North Carolina who has written extensively about fibromyalgia.

“These people live under a cloud,” he said. “And the more they seem to be around the medical establishment, the sicker they get.”

Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.

“Some of us in those days thought that we had actually identified a disease, which this clearly is not,” Dr. Wolfe said. “To make people ill, to give them an illness, was the wrong thing.”

In general, fibromyalgia patients complain not just of chronic pain but of many other symptoms, Dr. Wolfe said. A survey of 2,500 fibromyalgia patients published in 2007 by the National Fibromyalgia Association indicated that 63 percent reported suffering from back pain, 40 percent from chronic fatigue syndrome, and 30 percent from ringing in the ears, among other conditions. Many also reported that fibromyalgia interfered with their daily lives, with activities like walking or climbing stairs.

Most people “manage to get through life with some vicissitudes, but we adapt,” said Dr. George Ehrlich, a rheumatologist and an adjunct professor at the University of Pennsylvania. “People with fibromyalgia do not adapt.”

Both sides agree that people who are identified as having fibromyalgia do not get much relief from traditional pain medicines, whether anti-inflammatory drugs like ibuprofen — sold as Advil, among other brands — or prescription opiates like Vicodin. So drug companies have sought other ways to reduce pain.

Pfizer’s Lyrica, known generically as pregabalin, binds to receptors in the brain and spinal cord and seems to reduce activity in the central nervous system.

Exactly why and how Lyrica reduces pain is unclear. In clinical trials, patients taking the drug reported that their pain — whether from fibromyalgia, shingles or diabetic nerve damage — fell on average about 2 points on a 10-point scale, compared with 1 point for patients taking a placebo. About 30 percent of patients said their pain fell by at least half, compared with 15 percent taking placebos.

The F.D.A. reviewers who initially examined Pfizer’s application for Lyrica in 2004 for diabetic nerve pain found those results unimpressive, especially in comparison to Lyrica’s side effects. The reviewers recommended against approving the drug, citing its side effects.

In many patients, Lyrica causes weight gain and edema, or swelling, as well as dizziness and sleepiness. In 12-week trials, 9 percent of patients saw their weight rise more than 7 percent, and the weight gain appeared to continue over time. The potential for weight gain is a special concern because many fibromyalgia patients are already overweight: the average fibromyalgia patient in the 2007 survey reported weighing 180 pounds and standing 5 feet 4 inches.

But senior F.D.A. officials overruled the initial reviewers, noting that severe pain can be incapacitating. “While pregabalin does present a number of concerns related to its potential for toxicity, the overall risk-to-benefit ratio supports the approval of this product,” Dr. Bob Rappaport, the director of the F.D.A. division reviewing the drug, wrote in June 2004.

Pfizer began selling Lyrica in the United States in 2005. The next year the company asked for F.D.A. approval to market the drug as a fibromyalgia treatment. The F.D.A. granted that request in June 2007.

Pfizer has steadily ramped up consumer advertising of Lyrica. During the first nine months of 2007, it spent $46 million on ads, compared with $33 million in 2006, according to TNS Media Intelligence.

Dr. Steve Romano, a psychiatrist and a Pfizer vice president who oversees Lyrica, says the company expects that Lyrica will be prescribed for fibromyalgia both by specialists like neurologists and by primary care doctors. As doctors see that the drug helps control pain, they will be more willing to use it, he said.

“When you help physicians to recognize the condition and you give them treatments that are well tolerated, you overcome their reluctance,” he said.

Both the Lilly and Forest drugs being proposed for fibromyalgia were originally developed as antidepressants, and both work by increasing levels of serotonin and norepinephrine, brain transmitters that affect mood. The Lilly drug, Cymbalta, is already available in the United States, while the Forest drug, milnacipran, is sold in many countries, though not the United States.

Dr. Amy Chappell, a medical fellow at Lilly, said that even though Cymbalta is an antidepressant, its effects on fibromyalgia pain are independent of its antidepressant effects. In clinical trials, she said, even fibromyalgia patients who are not depressed report relief from their pain on Cymbalta.

The overall efficacy of Cymbalta and milnacipran is similar to that of Lyrica. Analysts and the companies expect that the drugs will probably be used together.

“There’s definitely room for several drugs,” Dr. Chappell said.

But physicians who are opposed to the fibromyalgia diagnosis say the new drugs will probably do little for patients. Over time, fibromyalgia patients tend to cycle among many different painkillers, sleep medicines and antidepressants, using each for a while until its benefit fades, Dr. Wolfe said.

“The fundamental problem is that the improvement that you see, which is not really great in clinical trials, is not maintained,” Dr. Wolfe said.

Still, Dr. Wolfe expects the drugs will be widely used. The companies, he said, are “going to make a fortune.”

New Year, new me.

This year, I have not failed to wish people to have a happy and HEALTHY new year.

I have been telling myself not to wonder what 2008 will bring to me, but what I can do to make 2008 the best it can be for me. 2007 had been a mixed year. In 2007, I had met with such unbelievable kindness, and also saw the worse in human kind.

2007 ended in significant way for me, especially career wise.

I made a lot of progress career wise. After a one year break from work to recuperate, I went back to work part-time, and subsequently did well enough to be taken in as a permanent staff. My work hours increased. I received external recognition for my work.

I lost my job After making all the arrangements to work efficiently and helping to take the company to where it is within a year- this is the treatment I received.

Suddenly, I lost trust in human kind. I lost confidence in myself. While I could predict and cope 95% of the time, a flare at the wrong time was an excuse to kill me. While no one bat an eye lid for people who take a few days "sick leave" for flu. But resting 3 days (on "annual leave"!) because of my RA was "proof" of my incapability. The B****told me that with a bit of management, even unpredictable things can be made predictable. It is all a personality problem. It is all about my inability to self-manage.

I remember vividly driving home crying. Crying out of frustration? Injustice? Shock? I did not know why. Perhaps the shock needed to released somewhere. I remember opening this blog when I reached home. I have not written anything for months-I had been so busy. I had again, took on extra work because the B****had a health problem and needed rest and that perhaps contributed to my flare.

Reading this blog was the moment I reached home was therapeutic. And I was somehow relieved that I have stopped working. There were just too many signs of unhappiness. I have hanged on too long just because part-time jobs for my position are hard to find.

Finding a job will be daunting. The B**** threatened bad references. Will I walk out of this mess?? I don’t know how long it will take, but I will have to. I have gone through worse times when I saw no light which signifies the end of the tunnel when my health was in the pits.

Blogging to blot off stress

Laura(CFS Squared) had describe an email from e-how as a "divine intervention" her post about stress and CFS.

"Divine intervention"-I can fully understand her choice of words. My take about being a patient who face fatigue as an enemy is you get less energy than other "normal beings", but tiredness seems to be generating more stress for you!

Fatigue--> Events which generate stress---> More fatigue, less energy to deal with stress--> More events which generate stress---->....

It is a vicious cycle.

I think blogging help to blot off some stress,

As I commented in Laura's site, by blogging:

1) you have to crystallize your thoughts/emotions of the day, and try to put in down in words. A nice, calming self-reflection activity to calm frayed nerves.

2) You can read your old posts, and note down what stressed you, and what had helped. Often, kind souls will also pass by your blog to give you encouragements.

In addition,

3) When everyone is tired of listening about how tired you are, your blog does not complain at all.

4) I came home tired-physically, and tired of trying so hard to control my tears because of the crap i get at work. Yet when I turn on my laptop, read others' blogs and then try to put down my own entry, I have calmed down.

5) Sometimes, I also find myself rereading my post again and again (thanks to the fog-loads of errors!), to correct my spelling and grammatical mistake, and sometimes trying to "shape up" the plot. Of course, it was a night mare when my fogs first started and I had to read the horrible mistakes. Now, this process is almost therapeutic sometimes. Strange, isnt it? Probably it is all part of the coping process.

That is all I can manage today. I am totally tired.

I have a totally bad day.

At work, I have been picked on because I happened to do something better than a healthy young man, and this guy just could not accept, and gave me hell. He is one of those super ambitious type. I suppose "losing" to a sick woman who works part time is too much to his ego.

Sigh. Damn it if you do well, damn it if you don't when you a chronically ill. When I look at the situation, I am not sure I would like to "sympathize" the poor guy or myself. Who had it worse? A bright young man who saw everything as a competition and found himself "losing" to a sickie, or a sickie who gets the crap on after putting in every nanowatt of energy in her work.

I just have to remind myself that I have done well, and "normal" sensible people will be happy for me to do well. Or is it?

sick leave

Sick leaves make you unpopular.

Do we have to prove that? Despite the fact that I replace my all my "sick leave"-made possible by the fact that I only work part-time, I can sense the unhappiness in my boss's reaction. Sigh.. but what do you do when you come down with a flu or a strep throat like everyone else?

The other guys may just brave it all and stay in the office-productive or not, but for me... these are enough to make me lie on my bed, with my RA and fibro joining the party.

That is a depressing development. A few months into a new job, and I thought I am doing pretty well, and now I can see the fact that I take sick leave nearly every month (even though I replace them), people still find a way to talk. I am compared to the person with a visibly broken finger- with plaster and stuff to fix it, but what I have is invisible. The sheer fatigue and widespread aches brought on my something as common as a viral infection. The IBS joining the party etc etc. Here I am, being talked about. Sigh. Despite effectively having 0 sick leave because I always replaced them, that was still not good enough.

I just wish that I get better soon.