Monday, January 28, 2008

Not telling the whole truth

I chickened out from telling the whole truth. I did not tell them I have RA and fibro.

I have a bad feeling I performed badly. It is so difficult to not tell the truth. IT holds me back in many ways.

Sunday, January 27, 2008

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?

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.”

Saturday, January 26, 2008

under payment

just as I thought I have put behind all the problems with the previous job and moved on, I received my final pay statement.

"mistakes" here and there. I get paid less that I deserve.Payment in lieu of annual leave less than it should, reimbursements lumped into "salary" and therefore taxed, etc etc. I was really angry when i punch the calculator to check the weird amounts. This is really annoying. I am glad I left

Friday, January 25, 2008

What happens if your landlord do not provide the heating and water supply?

What does the law say about provision of water and electricity? In this case, the tenants have just move in.
The landlord need to do the "repair" within "reasonable" time.

How long is reasonable?
It can be days, weeks. It is very difficult to define.

So, what will happen to my friends? Tonight will be particularly cold, and I cannot imagine them living in a house without any heating. They are miles away might need to pop into a B&B/motel if it gets really cold tonight. My friend has health conditions which is particularly intolerable to cold.

Could they get some sort of compensation for the extra expenses incurred? For example, not pay the rental for yesterday and today (the days where they flat is clearly not ready/fit for occupation??) or some sort of compensation for needing to seek alternative accommodation?
No, they law does not have any provision for compensation to tenants (even when repairs are clearly needed). However, the law says that the tenant must continue to pay full rental, and ensure no arrears (even when repairs are not carried out). Otherwise, they are considered defaulting. They can ask the landlord to reduce rental for the period the problems exist, but the landlord have no obligations to fulfill it.

Is there no obligations at all on the landlord's side? Is there no way to claim any compensation? This can be costly if dragged out.
They can try to make a claim a through the small claims court, but will need to seek help from a solicitor. This is no guarantee that they can get something. In addition, they will have to pay fees. May not be worthwhile.

Don't the landlord & management agent have an obligation to ensure that they flat have basic supplies such as water and electricity connected before renting out?

They may claim that they were "not aware" of the situation. It is very difficult to "contest". For example, the water supply might have been cut off because the previous tenant did not pay up, or there is a broken pipe. This will not be considered the landlord's fault.

So, what can the tenants do?
Request the management agent to get it done asap. If they still drag their feet, involve the local council. The local council can act as a "mediator". If all these do not work, and the problem is prolonged, they can speak to the local environment office, who can then look into the matter and have the power to take actions -"ordering" a repair.

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

?????? Can you believe it??? Gosh, I think i should just get a property and rent it out, since my only obligation seems to be carrying out repair within "reasonable" time whenever my tenants complain. I don't even have an obligation to check that the house is in good condition, with basic things like water and electricity provided!

Tell me, what is "reasonable"?

My faith in "law" is diminishing. Where is the justice?

When two parties are involved, the law always seems to protect the more "powerful" party.
Examples?

Employment laws: To what extent are employees protected? To what extent are disabled employees, young mothers etc are protected? Although there are "acts" in place, they are pretty useless, as there are so many loop holes. "Reasonable adjustments" for disabled employees. How do you define "reasonable"? It is all up to the employer to define, with so many excuses about hurting the company efficiencies etc.

Housing and tenancy:
I have just called on behalf of my friends to find out about their rights. They have just moved into a new rented flat and found out that there are no water supplies. No water supply= no boiler= no heating. No water supply= no sanitation.

Is this flat fit for occupation?

They called the housing agent who managed their flat immediately, only to be told that the "person in charge" is not around. Call again, and they seemed to drag their feet again. So, where are they going to stay today? It is really cold today, and my friend has health problems- mild lupus and bad peripheral circulation. I have seen her fingers and toes turn blue when she did not keep warm enough in winter. I have seen them bruised, and painful because of exposure to cold.

I called and ask some questions, and was really fuming about the laws of this country.

What does the law say about provision of water and electricity? In this case, the tenants have just move in.
The landlord need to do the "repair" within "reasonable" time.

How long is reasonable?
It can be days, weeks. It is very difficult to define.

So, what will happen to my friends? Tonight will be particularly cold, and I cannot imagine them living there. They are miles away from me, and they might need to pop into a B&B/motel if it gets really cold tonight.

Could they get some sort of compensation for all these problems? For example, not pay the rental for yesterday and today (the days where they flat is clearly not ready/fit for occupation??) or some sort of compensation for needing to seek alternative accommodation?
No, they law does not have any provision for compensation to tenants who are given an accommodation unfit for living. However, the law says that the tenant must pay full rental, and ensure no arrears even when repairs are not carried out, otherwise, they are considered defaulting. They can ask the landlord to reduce rental for the period the problems exist, but the landlord have no obligations to fulfill it.

Don't the landlord & management agent have an obligation to ensure that they flat have basic supplies such as water and electricity connected before renting out?
They may claim that they were "not aware" of the situation. It is very difficult to "contest". For example, the water supply might have been cut off because the previous tenant did not pay up, or there is a broken pipe. This will not be considered the landlord's fault.

So, what can the tenants do?
Negotiate with the management agent to get it done asap. If they still drag their feet, involve the local council. The local council can act as a "mediator". If all these do not work, and the problem is prolonged, they can speak to the local environment office, who can then look into the matter and have the power to take actions -"ordering" a repair.

?????? Can you believe it??? Gosh, I think i should just get a property and rent it out, since my only obligation seems to be carrying out repair within "reasonable" time whenever my tenants complain. I don't even have an obligation to check that the house is in good condition, with basic things like water and electricity provided!

In other words, my friends are on a lose lose situation. They will have to wait for then landlord to carry out the "repair" within "reasonable" time. Days later? A week later, since it is the "weekend now"?

I find that these are all totally ridiculous. If you have no water supply to your house, and you are freezing cold, I bet you will call they plumber immediately. I bet you will try to get someone to repair it within the next couple of hours. I bet you won't think nothing can be done since it is weekend.

Wednesday, January 23, 2008

Life's little achievements.. like baking a cake..

I find "little achievements" in baking. Still out of job, and waiting for responses from a few potentials, life is suddenly "quiet" again.

It is almost a decade ago since RA strike me. It is not the pain which is a pain, it is the fact that it takes a way my energy. And even on days I feel totally energetic, I am still at its' mercy. If I " overdo" things, I get a flare.Full stop. So, energy is a precious commodity which needs to be strictly rationed. And oh, have I forgotten about the fibromyalgia??

Having been active person and a "high achiever" all my life, I find the lack of energy and and all those problems a had really depressive. Gatherings and seasons like Christmas is not easy for me. These are the times I am forced to look at what my my close friends are up to. While I am always so happy to hear their achievements and so proud of my friends= gals who kick asses, sometimes it is quite difficult not to "notice" the GAP! These people are now directors, managers, specialist doctors, assistant professors, consultants etc etc and some juggle a successful careers with kids. They bought swanky houses, drive nice cars, fly around to do business etc.At those times my RA and fibro cause trouble, I can only sit and watch life goes by. Is it a wonder that chronic illness patients like us need to fight depression at all times? Ok.. got to stop here.. this is negative!

Anyway, now that I am a "veteran" in living with RA and fibro, I learn to create my own little achievements- yes, daily achievements! Hmmm.. like baking muffins. I am pleased to announce that I have now progressed to cakes! I should be thankful, as just over 1-2 years ago, I could only do muffins (since they only need to to "mix" dry and wet ingredients together). Now I am onto cakes, which need much more energy!

Today I baked a really yummy blueberry cake! Big deal, yeah? Yes, it is big deal. It is a big deal for someone like me. It is a big deal for people like us. It is a big deal, as it is a way for me cope with my illness, to ensure that I feel that I am still learning something new everyday, I am still "achieving" something daily. It is a big deal, as I did so many things to improve my health, to get myself from a state of "barely having the energy to make muffins" to not being worried at I might fall asleep from fatigue while the cake is baking. These are no tiny feats! Ask any CFS/Fibromyalgia patients! It is big deal, as without these little achievements, it is too easy to fall prey to Depression.

Here are the recipes for the blueberry cakes I made. I have a good day cake and a bad day cake. Go on, try it!
(Try to do the good day recipe when your hands/wrist are fine) No worries about the washing. They are so good that either the dog will lick things clean or the significant half/kids will be willing to wash up.




Blueberry cake recipes

Tried a couple of methods to do blue berry cakes. I can summarise that there are two which are worth a go.

A) Bad Day Blueberry Cake recipe- when you could still do while you have little energy, with almost guaranteed achievement

B) Good Day
Blueberry Cake recipe. Need a bit more work, but you could always cheap by getting an electric mixer.


Bad Day Blueberry Cake recipeIngredients

  1. A pack of cake mix (plain or victoria)- these can be bought at supermarkets. From my experience, the more "basic the recipe", the better it is.
  2. Blueberries- Exact amount depends on how much batter you get from the cake mix. I go by volume- add up 1/3 by volume.
  3. Eggs, water, and sometimes cooking oil.

Directions

  1. Follow directions on the cake mix batter
  2. Add in blueberries
  3. Bake according to instructions on cake mix batter.

Good Day Blueberry Cake recipe
Ingredients

  • 2 Eggs, seperated
  • 1 c Sugar
  • 1/4 tsp Salt
  • 1/2 c Shortening (I used 1/4 cup butter and topped up with vege oil. Works!)
  • 1 tsp Vanilla
  • 1 1/2 c sifted Flour
  • 1 tsp Baking Powder
  • 1/3 c Milk
  • 1 1/2 c Fresh Blueberries
1 cup = 8 oz

Directions

  1. Preheat oven to 350F.
  2. Beat egg whites until stiff, add about 1/4 cup of sugar to keep them stiff.
  3. Cream shortening, adding salt and vanilla.
  4. Add remaining sugar to this gradually.
  5. Add unbeaten egg yolks and beat until it is light and creamy.
  6. Add the sifted dry ingredients alternately with milk.
  7. Fold in beaten egg whites.
  8. Fold in the blueberries (take a bit of the flour called for and gently shake the berries in it so they wont settle).
  9. Pour into a greased 8 x 8 pan.
  10. Sprinkle top of the batter with some granulated sugar.
  11. Bake for 50 - 60 minutes.

Monday, January 14, 2008

Working with Rheumatoid Arthritis...know your Rights

...and your limitations.

After taking a couple of weeks off, I am now ready to go into my job search again. I have spent these few weeks reflecting on what went wrong, and what could be done better. It is very very sad but true- my RA had formed a big component of my work related problems. It is not all negative though. At times, I feel that I can understand and deal with issues better because of what I learned from RA, fibros etc.

However, it is undeniable, that my RA and fibro was a big set back in many ways, and may continue to be, unless I could overcome them.
  1. My boss see me as "chained"- not able to find another job easily as I only wanted to work part-time because of my health.
  2. I am seen as "unreliable", because of my RA flares. Although I only had 2 major flares, which would stop me from working even if I wanted, that was enough.
  3. Work arrangements- some colleagues resent my "special treatment", and wanted the same "privileges" extended to them.
Unfortunately, I had not been familiar with the rules and regulation, and did not know what were within my rights. But so what even if I was?

Although there were disability protection acts etc, these are really unclear. What does "reasonable adjustments" mean? That was really entirely up to the employers to decide. The are plenty loopholes the laws are worth another entry!

I find the Employment section of NRAS very helpful and informative.

The problems that I
(and many other RA patients!) faced at work is not something which I could resolve entirely on my own, despite bring out the whole lot of coping skills I have and getting full support from my family.

Communicating clearly about your condition with your colleagues and boss helps a lot (but may backfire sometimes). Making concessions (like getting low pay), and putting in extra hours to ensure quality work helps too (although you may see this as some sort of discrimination/exploitation!!).

However, improving the perception and understanding of other people about RA needs more than these individual efforts! It is all too easy for people to attribute your limitations to your lack of personal discipline rather than RA. How often have you heard " I am tired TOO", when you say you are fatigued? There is also an element of unpredictability and invisibility about RA's up and downs, which other could interpret as "inconsistent", and "lack of evidence". Ie, they may suspect that you are really waking up late when you say you have bad stiffness and need to come in 1-2 hours later.

Improving the work situation of patients with RA it is something that more formal protection in terms of regulations is needed. As RA patients, we need to create the awareness of these issues not only for our own benefit, but for all RA patients.

I not only want a job. I want to be able to work optimally, so that I can do my best! I want the chance to do what I can do based on my skills, education and experience. All I need is some minor modifications to get there. Can these be done?

Thursday, January 03, 2008

Beautiful soul

I am beautiful... I believe...

The beauty of the soul shines out when a man bears with composure one heavy mischance after another, not because he does not feel them, but because he is a man of high and heroic temper.

-- Aristotle
.....for I can still feel happy, laugh, and hold my head high despite one blow after another. Not a fan of boxing/wrestling, but I understand that you are not lost no matter now many blows you received, as long as you can stand up again.

Here am I, looking forward to the daffodils when everyone is thinking "snow" and "cold". I could bet that there will be no snow today-my joints told me so.

Wednesday, January 02, 2008

New Year resolution

Everyone asked me if I have new year resolutions.

Nope!

Was it surprising? I gave up doing these years ago. You can make a resolution anytime, and not procrastinate till the new year.

Tuesday, January 01, 2008

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.