Just a note to say,
I AM FINE.
It has been tough... but I am ok. I braved myself and pushed myself out of my bed to work.
Hanging on.
The goings gets tough.. so the tough cookie gets going.
Tuesday, March 18, 2008
Friday, February 29, 2008
At the supermarket- can you pack your bags?
If yes, you lucky fella.
Two nights ago, I was a the checkout counter at the local supermart. I had a friend coming over, and wanted to buy some stuff, before picking him up from the station. My time was a bit tight.
I went to the shortest queue. 2 persons in front of me. I saw another customer left the queue, and I was the next customer.
The man had trouble packing his grocery. It took him a few attempts to get each item into his plastic bag. And after filling 1 bag, he struggled to open the next plastic bag. He had tremors, and poor coordination.
No wonder the guy in front of me left!!! It took him a long time to fill up the bags, and the cashier did not help at all! He would rather stare into space.
My first instinct was to help the man, but then I thought.. no, maybe not. This guy is really really young. Younger than me, perhaps. Twenties? Early thirties?
Whatever his problem, give him a chance to complete a simple task without help. Poor guy. I feel for him. I have been in his position. "Clogging up" people.
He is putting in a lot of effort, and conscious that customers behind him had been leaving the queue. He kept on looking at me from the corner of his eyes. Wondering if I was getting impatient? Wondering if I minded? Wondering why I did not help? I did not know. I am not sure if i did teh right thing? I actually took out my phone to try to look busy. What it the thing to do? I had no idea.
I only remember how happy I felt when i could bring back a few bags of groceries without help. Yes, it was a lot of effort, but I could do it on my own without help. I did it.
What would have made his day? getting help to pack groceries? Or buying, packing and carrying home the groceries to feed his family, all by himself?
Two nights ago, I was a the checkout counter at the local supermart. I had a friend coming over, and wanted to buy some stuff, before picking him up from the station. My time was a bit tight.
I went to the shortest queue. 2 persons in front of me. I saw another customer left the queue, and I was the next customer.
The man had trouble packing his grocery. It took him a few attempts to get each item into his plastic bag. And after filling 1 bag, he struggled to open the next plastic bag. He had tremors, and poor coordination.
No wonder the guy in front of me left!!! It took him a long time to fill up the bags, and the cashier did not help at all! He would rather stare into space.
My first instinct was to help the man, but then I thought.. no, maybe not. This guy is really really young. Younger than me, perhaps. Twenties? Early thirties?
Whatever his problem, give him a chance to complete a simple task without help. Poor guy. I feel for him. I have been in his position. "Clogging up" people.
He is putting in a lot of effort, and conscious that customers behind him had been leaving the queue. He kept on looking at me from the corner of his eyes. Wondering if I was getting impatient? Wondering if I minded? Wondering why I did not help? I did not know. I am not sure if i did teh right thing? I actually took out my phone to try to look busy. What it the thing to do? I had no idea.
I only remember how happy I felt when i could bring back a few bags of groceries without help. Yes, it was a lot of effort, but I could do it on my own without help. I did it.
What would have made his day? getting help to pack groceries? Or buying, packing and carrying home the groceries to feed his family, all by himself?
I lost 1 kg!
Nothing to shout about?
For someone with RA, fibro and PCOS, that had been pure hard work (and pain). And I have been trying to do it in such a way which will not trigger my fibro or RA. Previous plans have been foiled whenever too much exercise or too low calories caused RA flares.
GYM=FLARE for me. I have to be very very careful about how much I do, type of activities and the sequence. I have not been able to follow the plan suggested by the trainer. It is simply not workable because my pain and strength at different joints/muscles varies each day! I know myself better, and I have decided to follow my own gym strategy. Don't think they will be happy when they see my records, but well, a woman has to do what a woman got to do! :P
More details of my small weight loss progress here.
And I must honestly admit: I ache all over the place, but the sauna helps. Massage would be fantastic, but it is $$$$
For someone with RA, fibro and PCOS, that had been pure hard work (and pain). And I have been trying to do it in such a way which will not trigger my fibro or RA. Previous plans have been foiled whenever too much exercise or too low calories caused RA flares.
GYM=FLARE for me. I have to be very very careful about how much I do, type of activities and the sequence. I have not been able to follow the plan suggested by the trainer. It is simply not workable because my pain and strength at different joints/muscles varies each day! I know myself better, and I have decided to follow my own gym strategy. Don't think they will be happy when they see my records, but well, a woman has to do what a woman got to do! :P
More details of my small weight loss progress here.
And I must honestly admit: I ache all over the place, but the sauna helps. Massage would be fantastic, but it is $$$$
Saturday, February 23, 2008
God.. in times of despair?
Perhaps people turn to God in times of despair?
I have been thinking of God, and talking about God, and used the word God, both privately and to myself many times recently.
But which God I am refering to?
I have been thinking of God, and talking about God, and used the word God, both privately and to myself many times recently.
But which God I am refering to?
Thursday, February 21, 2008
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.
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.
Wednesday, February 20, 2008
Another short gym session Plus massage
I did only about 20 minutes worth of gym.
Couldn't finish the 10 minutes stationary bike. after 5-6 minutes, could see my knees hurt. I can tell you that I am scared of triggering another "full blown" flare. I cannot afford it.
So, I tried to rotate the joints used. I dont think the "trainer" understood what i meant, or he had his own ideas. I dont think i could do what he recommended- it used the same joints, although different muscles. My joints hurt.
So, this is my plan...
Bike: knee, some hips + ankle
Chest press -shoulder, elbow plus some wrist
Abdominal crunch machine - i dont feel any joints screaming! This is becoming my fav. Washboard abs soon???
..... and i tried to ensure i rotate ...
I think it seems to work better this time. Joints are sore, and extremely tired. Could only wake up at 11 am. I was suprised to see a number of missed calls on my mobile. Surely as sign of how fatigued I was. Howevr, this was better than my last gym attempt, no where as sore as before. Perhaps this is a good strategy for my gym? Instead of just focusing on muscles worked-which my trainer is doing, i also need to look at the joints used, and angle used?
Sigh, everyone is telling me to exercise, and make it sound so easy. I was totally pissed off when a "friend"asked me if I knew I should warm up, and I know how to do warm up or not. If I warm up probably, I would not have a problem. It is may be just my lazy excuse.
What makes her think she has the right to be so condescending? She has no idea how fit I was, and how much exercise I did before RA and fibro hit me, and have been saying things which sound like I got all these health problems because I do not exercise. She has been annoying me for sometime-so I had no hesitation telling her off. Tribe cleansing, you may call it.
Couldn't finish the 10 minutes stationary bike. after 5-6 minutes, could see my knees hurt. I can tell you that I am scared of triggering another "full blown" flare. I cannot afford it.
So, I tried to rotate the joints used. I dont think the "trainer" understood what i meant, or he had his own ideas. I dont think i could do what he recommended- it used the same joints, although different muscles. My joints hurt.
So, this is my plan...
Bike: knee, some hips + ankle
Chest press -shoulder, elbow plus some wrist
Abdominal crunch machine - i dont feel any joints screaming! This is becoming my fav. Washboard abs soon???
..... and i tried to ensure i rotate ...
I think it seems to work better this time. Joints are sore, and extremely tired. Could only wake up at 11 am. I was suprised to see a number of missed calls on my mobile. Surely as sign of how fatigued I was. Howevr, this was better than my last gym attempt, no where as sore as before. Perhaps this is a good strategy for my gym? Instead of just focusing on muscles worked-which my trainer is doing, i also need to look at the joints used, and angle used?
Sigh, everyone is telling me to exercise, and make it sound so easy. I was totally pissed off when a "friend"asked me if I knew I should warm up, and I know how to do warm up or not. If I warm up probably, I would not have a problem. It is may be just my lazy excuse.
What makes her think she has the right to be so condescending? She has no idea how fit I was, and how much exercise I did before RA and fibro hit me, and have been saying things which sound like I got all these health problems because I do not exercise. She has been annoying me for sometime-so I had no hesitation telling her off. Tribe cleansing, you may call it.
Monday, February 18, 2008
Two days after another gym session
I spent another 45 minutes in the gym 2 days ago.
Now I see "results" of my workout:
Joints: swollen.
Muscles: sore.
Sigh. Sigh. The body is broken but the soul is not. I will have another gym session tonight! Perhaps all I need is just a little sports massage.
Now I see "results" of my workout:
Joints: swollen.
Muscles: sore.
Sigh. Sigh. The body is broken but the soul is not. I will have another gym session tonight! Perhaps all I need is just a little sports massage.
Thursday, February 14, 2008
Hurt by peanuts
I love peanuts-In fact I love any type of NUTS!
But nuts are a luxury nowadays-Many types are expensive. Because of the health benefits, nuts are increasingly treated like health food. I eat them because I love it.
However in the recent years, eating nuts could be tough. No, I still have my teeth intact. It is just that my jaw joints would hurt. Yup, that is fibromyalgia plus Rheumatoid Arthritis. Even peanuts could hurt. My jaw joints HURT when I chew them. They feel sore!
But nuts are a luxury nowadays-Many types are expensive. Because of the health benefits, nuts are increasingly treated like health food. I eat them because I love it.
However in the recent years, eating nuts could be tough. No, I still have my teeth intact. It is just that my jaw joints would hurt. Yup, that is fibromyalgia plus Rheumatoid Arthritis. Even peanuts could hurt. My jaw joints HURT when I chew them. They feel sore!
I am a HAPPY survivor
Yes I am. Yes I have to be.
No matter what fate is written
No matter what shit or dirt is hurled
No matter what people say
No matter what people do
I know life is about choices
And everyone will have a choice
In the worst of situations
You either smile or cry
You cant prevent death
You cant stop the pain
But you can still decide
To smile or to cry
I decide to add another "column". A column "called inspiration". And I got to start this column with my favourite story: The donkey.
No matter what fate is written
No matter what shit or dirt is hurled
No matter what people say
No matter what people do
I know life is about choices
And everyone will have a choice
In the worst of situations
You either smile or cry
You cant prevent death
You cant stop the pain
But you can still decide
To smile or to cry
I decide to add another "column". A column "called inspiration". And I got to start this column with my favourite story: The donkey.
Monday, February 11, 2008
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.
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.
Sunday, February 10, 2008
What keeps you awake at night?
As I am preparing for another interview, and struggling with " to tell or not to tell", I also had to prepare for some answers to questions like "why do you want to do this"?
My two previous jobs were more in the commercial side, and people are often skeptical why you would give up jobs with more earning potential and "glamour" factor for less glamorous ones. And bear in mind, the person sitting across the table, who is fielding you the question, may have been trying to break into where you came from-unsuccessfully. In sort, there are skeptics out there who need to be convinced that you are sincere.
Why do I want to make this move? It is difficult to describe. It is a kind of feeling that I have to do something more "meaningful"? Something more meaningful, esp when it may benefit other people with various types of illnesses? If you know that I had been really ill, and I am still not feeling my best, you may "understand". If you are like me- been through hell , you will think what my career choice now is perfectly natural. But how would you know if I can't tell you about my colourful medical records?
How do I describe?
What keeps me awake.
Yes, I think I have to make a move, because I did not like what kept me awake. Apart from the aches, pains, and "ouch, I/he-hit-my-badly-inflamed-joint(s) moments", things at work could keep people awake.
While I was doing a job which directly impact the patients, my worries were where can I find the support ie money to do it. I would toss and turn, trying to find ways to make things work better etc.
While I was at the commercial sector, after proposing or doing something which I am sure benefit other patients, I had to ensure what I do would have some commercial benefits (anything without commercial interest should be aborted asap- no hope!). I would also be awake wondering whether my "great" idea is congruent to the objectives of the person(s) making the decision. You got to know their "personalities", their personal priorities aka agenda. Being kept awake by these things is totally worthless and useless.
I did not like what kept me awake at the commercial sector. I did not like lying awake wondering about meeting people's or a company's money making or a person's career boosting objectives. If I were to stay awake, I would prefer being stressed about how to benefit the patients. As an "old woman", I would not allow my beauty sleep being taken away by concerns about lining people's pocket.
Will a normal, healthy person understand my "what kept me awake" argument?
My two previous jobs were more in the commercial side, and people are often skeptical why you would give up jobs with more earning potential and "glamour" factor for less glamorous ones. And bear in mind, the person sitting across the table, who is fielding you the question, may have been trying to break into where you came from-unsuccessfully. In sort, there are skeptics out there who need to be convinced that you are sincere.
Why do I want to make this move? It is difficult to describe. It is a kind of feeling that I have to do something more "meaningful"? Something more meaningful, esp when it may benefit other people with various types of illnesses? If you know that I had been really ill, and I am still not feeling my best, you may "understand". If you are like me- been through hell , you will think what my career choice now is perfectly natural. But how would you know if I can't tell you about my colourful medical records?
How do I describe?
What keeps me awake.
Yes, I think I have to make a move, because I did not like what kept me awake. Apart from the aches, pains, and "ouch, I/he-hit-my-badly-inflamed-joint(s) moments", things at work could keep people awake.
While I was doing a job which directly impact the patients, my worries were where can I find the support ie money to do it. I would toss and turn, trying to find ways to make things work better etc.
While I was at the commercial sector, after proposing or doing something which I am sure benefit other patients, I had to ensure what I do would have some commercial benefits (anything without commercial interest should be aborted asap- no hope!). I would also be awake wondering whether my "great" idea is congruent to the objectives of the person(s) making the decision. You got to know their "personalities", their personal priorities aka agenda. Being kept awake by these things is totally worthless and useless.
I did not like what kept me awake at the commercial sector. I did not like lying awake wondering about meeting people's or a company's money making or a person's career boosting objectives. If I were to stay awake, I would prefer being stressed about how to benefit the patients. As an "old woman", I would not allow my beauty sleep being taken away by concerns about lining people's pocket.
Will a normal, healthy person understand my "what kept me awake" argument?
Friday, February 08, 2008
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?
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?
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.
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?
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
"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!
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.
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.
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.
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