Tuesday, 29 January 2008

UK Doctors Say Don't Treat Old Or Unhealthy

From the UK's Telegraph:
Don't treat the old and unhealthy, say doctors

By Laura Donnelly, Health Correspondent
Doctors are calling for NHS treatment to be withheld from patients who are too old or who lead unhealthy lives.
Smokers, heavy drinkers, the obese and the elderly should be barred from receiving some operations, according to doctors, with most saying the health service cannot afford to provide free care to everyone.
£1.7 billion is spent treating diseases caused by smoking, such as lung cancer and emphysema
Fertility treatment and "social" abortions are also on the list of procedures that many doctors say should not be funded by the state.
The findings of a survey conducted by Doctor magazine sparked a fierce row last night, with the British Medical Association and campaign groups describing the recommendations from family and hospital doctors as "outrageous" and "disgraceful".
About one in 10 hospitals already deny some surgery to obese patients and smokers, with restrictions most common in hospitals battling debt.
Managers defend the policies because of the higher risk of complications on the operating table for unfit patients. But critics believe that patients are being denied care simply to save money.
The Government announced plans last week to offer fat people cash incentives to diet and exercise as part of a desperate strategy to steer Britain off a course that will otherwise see half the population dangerously overweight by 2050.
Obesity costs the British taxpayer £7 billion a year. Overweight people are more likely to contract diabetes, cancer and heart disease, and to require replacement joints or stomach-stapling operations.
Meanwhile, £1.7 billion is spent treating diseases caused by smoking, such as lung cancer, bronchitis and emphysema, with a similar sum spent by the NHS on alcohol problems. Cases of cirrhosis have tripled over the past decade.
Among the survey of 870 family and hospital doctors, almost 60 per cent said the NHS could not provide full healthcare to everyone and that some individuals should pay for services.
One in three said that elderly patients should not be given free treatment if it were unlikely to do them good for long. Half thought that smokers should be denied a heart bypass, while a quarter believed that the obese should be denied hip replacements…
Gordon Brown promised this month that a new NHS constitution would set out people's "responsibilities" as well as their rights, a move interpreted as meaning restric­tions on patients who bring health problems on themselves…
The survey found that medical professionals wanted to go much further in denying care to patients who do not look after their bodies.
Ninety-four per cent said that an alcoholic who refused to stop drinking should not be allowed a liver transplant, while one in five said taxpayers should not pay for "social abortions" and fertility treatment.
Paul Mason, a GP in Portland, Dorset, said there were good clinical reasons for denying surgery to some patients. "The issue is: how much responsibility do people take for their health?" he said…

The shape of things to come."
     I think Canada is acting worse than the UK but they are not saying it publicly or they would have a riot on their hands. I don't smoke, drink and I am overweight but not dangerously obese. A few months ago my province passed a law that overweight people will have to pay for their own surgeries. My health problems are not due to my lifestyle or anything that I did. The article above talks about unhealthy habits, yet I have been told that I can't get any more tests or treatment, just enough to keep me comfortable until I die. I need to look for another pain Dr. ASAP because my Dr. is losing it mentally and will be forced to step down or will retire, then I will not be able to move without my pain medicine. I talked to my pharmacist who has always helped me more than any Dr. and he said he doesn't even know any doctors who will help with chronic pain the way I have been getting help, so I am praying to be led to the right Dr.
    Back to the idea of not getting proper treatment, Mom is not able to get treatment anymore either. That week of going to the hospital every day and waiting 8+ hours then her getting sent home again was probably the unspoken avoidance of the Dr.  They have been told not to waste gov't money on the elderly or sick, and maybe they will even get in trouble for doing so, so that might have been his way of avoiding a way to treat mom.
   One Dr. told me that they just hope I die so they won't have to pay me disability anymore, and I say that doesn't make sense. Why not offer enough treatment to help me be able to work? Most of us on disability WANT to get feeling better and WANT to work! Not being useful is terribly discouraging.
The moment they let me die from neglect, there will be others who get onto disability within seconds, so they will still be paying disability for someone, whether its me or someone else, so why make us so disposable? They are not saving money by letting people die so young.
New word for the day FRUSTIPATION!!
   I called to get my pain medicine refilled, and my Dr. had messed up my prescription. He told me to take 2 a day, but didn't write those new instructions on the prescription, so the pharmacy thinks I'm supposed to only take 1 a day, so I can't get them refilled for weeks yet.
When in July that Dr. told me I have 1 year to live, he must have been prophesying something that I didn't know yet, that my treatment would be cut off so I might not live very long. SOOO FRUSTIPATING! If I am dying, it will be alone and in horrible pain, unable to get any help or treatment, so I will be a burden to my sick mom and brother. Not what I pictured for the end of my life at all.

Thursday, 24 January 2008


Two articles that might give you some hope.


Maybe there will be a cure in my lifetime yet, if they are finding the damaged gene (#13 by the way), and now finding a mutated gene that stops lupus! I am PAST ready....and waiting for a cure or a kind Dr. who will help with treatment, or for a release from this prison of a body! Sorry to not sound so upbeat and positive, but intense pain and weakness saps the ability to reason clearly or think positively. If I had someone around to help me change my thoughts, it would be great, but I don't...so I just keep praying.

Monday, 21 January 2008

One Purpose For Illness

written to a male internet friend with Fibro:
    I have had a number of near death experiences, and I actually fought with the spirit that was talking to me on my first near death experience and told him I would not go back to earth until I got some answers. He said "What do you want to know?" and I sat down and he answered questions for so long that it filled 7 large pages when I woke up and wrote it all down before I forgot it. I said "I can't even serve the Lord in that kind of body. What good am I down there? I can't even complete the reason I was put on earth." The spirit told me that pain and illness keep us away from rich, shallow, selfish people, keeps us out of the world, and makes us closer to God. The lessons we learn from being sick, from communing with God through prayer when we are suffering, are priceless, and can't be learned any other way. I wouldn't give up that knowledge or that feeling of love and security for anything. Life is just a short 3 hour movie compared to the eternity that was before earth life and the eternity that will be after earth life. "Be still, and know that I am" was one of the first things I was told through inspiration, when I was 16. I was so hyper, and could have taken on the world, but I would have been more worldly instead of spiritual. Whenever the Lord needed me to slow down and listen, He slowed me down. Now I'm at a complete halt and I watch the world spin around me, but others come to me and tell me things they would not tell anyone else, because they know that I am one of their few friends that understands what suffering is. I know men don't talk to other men about weaknesses and suffering, but if anyone did need someone to talk to, I bet they would choose you to come talk to, because they know you would not judge them for having a weakness. I was told that even if I eventually became bedridden, that the Lord would find ways to send people to me to help. That was in 1979 or so, before there was even such a thing as a home computer or the internet. Now I am bedridden, and I can share the Lord's love with people from all corners of the earth all in one day. Even a rich, healthy person can't do that without the internet!
    We are internet disciples. We are healing souls, helping people, one person at a time. Some have the mission of speaking to stadiums of thousands at a time, some have the calling of reaching thousands of people, one at a time. Then that person passes love and wisdom on to another person, and when we get to the other side, we will see all the people we were able to help from our bed our couch, through the ripple effect.
    There is a purpose for being ill. We are a tool in the Lord's hands, even if we are a weak tool. We don't have to be perfect, we just have to be willing, and we will be more useful to the Lord than the 95% or so of the world that are not willing to help the Lord; that want to live for their own pleasure only.
     When I joined the online fibro support group, I couldn't believe how every one of them was spiritual, compassionate, and had many other personality traits in common. I wondered if a certain personality type was prone to getting fibro, or if the fibro created that personality type. It is both. Surveys have shown that people with lupus, fibro and CFS are usually type A, driven, perfectionistic, which makes their illness even more frustrating, but the fibro does change them into type B, imperfect, non-demanding, calmer and more spiritual....if they let it. You can let the disease make you better, or bitter. Life is just too hard to live it being bitter...so I let the Lord help carry my load, and life is better. The social part of this disease is so very tough. Tougher than the pain sometimes. It's quite a trial.
     Maybe you already read my post about the Dr. who wrote a very wrong and cruel report about fibro in the New York Times, and I was asking people to write to the Editor and tell them that the Dr. is all wrong and behind the times in what they have learned about fibro. If you didn't read it, would you please go to my blog and read the first and second entries?
    Blessings to you !!!
 `·.¸.·´  Bluebirdy
I try to take one day at a time -- but sometimes several days attack me at once.
"For I know the plans I have for you," declares the LORD,
"plans to prosper you and not to harm you, plans to give you
hope and a future. "     Jer. 29:11.

Friday, 18 January 2008


>>means "new paragraph starts here". I still don't know how to make my posts separate into paragraphs if I type them at the blog website. It will only separate into paragraphs if I send it from my email program.

>>The captions in the above picture:
>>Below the first set of brains, it says "Scans of a normal brain and the brain of a fibromyalgia patient"
>>Below the second set of brains it says "Scans of a normal brain and the brain of a CFS (chronic fatigue syndrome) brain.
>>The colored areas represent areas of the brain that are active and helping the body and brain to function at full potential. In the diseased brains, there is less activity, so our bodies do not function as well, they do not do what we want them to do, and this really accounts for the brain fog, or fibro fog, where we get forgetful and can't concentrate on anything very well and make a lot of mistakes.

>>If you want to look at that picture more closely, left click on the picture and it will enlarge.

>>See? There is a DEFINITE disease, a DEFINITE difference between a healthy functioning body, and a the way our brain makes us function if we have fibro or CFS. This test alone should prove there is a common denominator, a place to start with the research to treat this disease. It also proves it is NOT just a person complaining too much, as the New York Times insinuated today (see next post below)

>>I got it from a site that no longer exists, the website address is at the top of the picture, but it is no longer a used website. I got it more than 12 years ago, whent the internet first started, so if the medical world had information about these conditions, I wonder why it was not publicized more and why more has not been done. I know that in Canada its almost impossible to find a Dr. with enough time or compassion to research or treat difficult cases. They are even telling us which diseases or conditions they refuse to treat, and its so difficult to get another Dr, the patients can't complain. So if my Dr. refuses to treat rashes or kidney problems, then if I develop those problems, I am on my own, because I can't find another Dr. One lady told me she thinks even Mexico has better treatment in the hospitals than what I have been experiencing here.

>>I, like many or most lupus patients, have fibromyalgia on top of lupus, (and 7 other serious conditions which lupus caused) and I have been studying about it so much that I feel like I could teach the researchers a lot!! It affects the nerves, muscles, connective tissue, the parathyroid, which controls every chemical in your body and brain,and all "cycles" of your body such as when you wake and sleep, get hungry or not, run out of energy or get invigorated. Everything in our body goes in cycles, and the parathyroid helps regulate those cycles. Certain chemicals are released at certain times during the day to digest food, other chemicals to make you sleepy or stimulated, others to make you relieve yourself in the bathroom at certain times, and all those things are affected in fibromyalgia. Its not just sore muscles. Its a horrid epidemic of a disease. The medical world likes to blame the patient when they can't find the answer. They forget that even diabetes used to be classed as a form of insanity before they found the cause and test for it! There is definitely something wrong, they just have not found the test or the done enough research. It takes the average of 11 years for a person to be diagnosed with these "invisible illnesses" such as lupus, CFS or fibro. Before diagnosis, people are thought of as fakers, lazy, hypochondriacs, neurotic, anything the Dr. can blame on the patient. The patient's family and even the patient can start to doubt themselves and wonder what they are doing to themselves. I suggest a book I call my "Fibro bible". Its a book written by a Dr. who has fibro. Its called "Fibromyalgia and Myofascial Pain Syndrome" by Devin Starlanyl. She names every possible symptom and why it happens, and has chapters about how to manage almost every part of your life while living with this disease. I bought mine used online because its expensive, because its almost like a textbook. You can buy it used at http://www.half.com/, http://www.ebay.com/, http://www.alibris.com/, http://www.amazon.com/ , and I'm sure there are other used bookstores online as well.



Please help change people's opinion of Fibro!

Hi gang;
   I get the newsletter from  the American Pain Foundation. Just now I got an alert that they need everyone's help that has fibro. It seems that some big wig Dr. wrote an article in the New York times saying that people with fibro are just complainers who won't deal with the aches and pains everyone has (which is also exactly what my rheumatologist told me...I almost kicked him so he could feel my pain)lol... and the article goes on to say....well I'm getting ahead of myself here. I am just going to copy the letter, and I ask you to use the sources below to write your own short note to New York Times to try to undo the damage that Dr. may have done, and to teach others about fibro and what it really is like to live with it. The colored sentences are clickable links so you can see the actual article and instructions on how to contact the editor or New York Times, which goes world wide! Here's the alert I got:

Media Alert 

Dear APF Advocates,

This week, there has been much controversial media coverage on fibromyalgia and chronic pain. The New York Times published an article, Drug Approved. Is Disease Real?, which questioned the validity of fibromyalgia and chronic pain itself. The article suggested that the pain of fibromyalgia is a case of people who "obsess over aches that other people simply tolerate," and that the pain is just a "physical response to stress, depression, and economic and social anxiety." This is an extreme and harmful mischaracterization of the reality of pain.

See Background Information and Additional Media Coverage 

The public and the media need to hear from you! whether you are a person with pain or someone who cares for or treats people with pain. APF is dedicated to raising awareness of fibromyalgia and other painful conditions and the fact that people in pain have a right to timely, appropriate pain care.

Please Take Action NOW: Write a Letter to the Editor of The New York Times.

Thank you for advocating for people with pain.  Together, we will make a difference!

Best regards,
The American Pain Foundation

Thursday, 10 January 2008


Hello all!

~WE GOT ANOTHER MIRACLE!! We went to the hospital and instead of admitting Mom, they sent her to the outpatient clinic first, where they kept us for 7 hours, the nurse acted like she was on drugs, kept carrying messages from Mom back to the Dr. who was doing scopes on people, then we would get his opinion back that way, and she kept messing up the messages, didn't understand anything we said, we repeated things up to 6 times, I finally went unconscious from my blood sugar going too low from lack of food or water and all the stress, so they some glucose to bring me around. (And mom was the one there to be treated. Gosh...what a joke, me trying to care for HER.) She is able to do some shopping and clean house a bit (do a LOT more than me), and she can get medical care anytime so she's less apt to die than me. Anyway we got so tired and in pain and frustrated after 7 hours of this carrying messages back and forth and no Dr. seeing mom, no admitting to hospital like she was told was supposed to happen, no test, nothing...so we walked out.
It was a tough day but WORTH IT cuz mom won't be having surgery soon!
Today we start over again and I take her out of town AGAIN (did this day before yesterday) to the Dr. and hospital there...BUT THIS MEANS THE SURGERY WILL BE DELAYED!!!---Which means she will be alive for a while which means I won't be homeless. They don't do surgery in this little town I take her to see her Dr. at
Now if she can delay this surgery until my husband gets home, he can earn enough that we can continue renting the house we are in now, if anything happens to Mom. Or if the Lord can delay the surgery until other living arrangements are made for me (in case my husband doesn't come back from the war zone), that would be a wonderful gift from the lord too.
Got to drag my painful body to put all mom's luggage in the car again. (Why am I doing this when she can do it and is healthier than me and doesn't use a walker and doesn't have any muscle pain at all?) ---yeah...cuz I'm the obedient daughter that is grateful for all the years she cared for me. My brothers and sister have all told me they are really worried that I will die before Mom, because she has been served and waited on for 30 years, and I have served and waited on my first hubby and now mom until my body is falling apart.
In July when that Dr. told me I would only live for 1 year...on days like yesterday, I sure feel like its true, but I won't believe any human. God decides when I go, not man, and I have things to do yet. I hope to be here for the second coming. lol.
Now I have to start looking into getting help for myself, like some cyber-friends have been urging me to do, (been trhying for 10 years but got to keep trying)...to go to the top if I have to...but have not had enough strength for that either. I can only do a little bit of functioning each day. I wish I could afford to hire a secretary for all my taxes, the legal work to get my hubby home, and now to get help for myself. I have not even had a minute or the strength to get gifts mailed out yet. grrrrrrrr!
Wow, such a faith building experience. Now if I could just keep remembering that he is taking care of us and will even make miracles for us! It is hard for me to believe that everything will be OK, because even though I put everything into God's hands, he HAS let some very awful things happen, because that's what life is all about...so even though in my heart I know God is in control...I am always afraid of how hard the next "test" is going to be and if I am up to the challenge.
See? I told you that whenever myu cyber friends pray for me, I feel it, and THINGS HAPPEN! I know the Lord hears the prayers of this group. I have never found so many sincerely faith filled people in one place. THANKYOU THANKYOU THANKYOU for your prayers!
Love you all! Bluebirdy

P.S. Though I cried and prayed half the night from the pain, hurting too much to even get up to get my medicine, hurting too much to get back to the hospital (where they wouldn't do much anyway), TODAY I DON'T HAVE MUCH PAIN! I am ready to help Mom again!!! Usually it takes me a few days to be functional after 2 days of running around like I just had. Yeah I will be hurting when I get back from out of town again, but that's ok if God helps me recover quickly like this time! Oh Lord please help me remember that you love me and are helping me and will continue to help me!

Tuesday, 8 January 2008

Like A Lamb To The Slaughter?

    Oh help. Just weeks after Dad's death, and all I have had time to do is to take mom to the Dr, and E.R. and hospital and stay with her at the hospital, then in between I collapse in pain. I have not even had a chance to get my family's Christmas boxes sent out!
  I took mom out of town to the Dr. today. I still feel so alone in these crisises. I know God is here but I need PHYSICAL help. My brother who lives here has his own physical/mental problems and is not able to help, other brother and sister live hundreds of miles away and that brother works too much to come even to the funerals.
    Mom will be admitted to the hospital in the morning before 9 a.m.  In about 3 days she will have the surgery that the doctors kept warning her she will not live through. I feel like I am carrying my mom into the place of her murder. It feels like she has accepted the surgery as a way to go be with Dad and that way it won't be considered suicide.  If she dies, I will be homeless. I have tried for years to get into cheaper housing that is sponsored by the government.My disability will not cover the price of moving or the price of an apartment. If she lives, I do not have the strength to take care of a surgery patient, or we will both be in the hospital within a day. What a messy crisis.
    I also saw a Dr. today that was on call for my Dr. who is gone for 6 months. No Dr. will take responsibility for me while my Dr. is away, (they say I'm too 'complicated') so mom is getting medical care, but no matter how bad I get physically or emotionally as I try to care for her or if she dies, I don't get any help. Feels like I will die of pain/lupus and other problems before Mom dies, because she CAN get all the medical help she needs. Maybe in July the Dr. that told me I only had a year to live knew something more than I do.
   Thanks for caring, you friends who do care and have been so supportive. Please pray for strength for my brother and I to bear our illnesses, mom's illness and surgery and maybe death, and the period after of taking care of her estate and trying to find a place to live so I won't be homeless.

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