More wonderful medical news

Of course, I get all the fun stuff. I have both rheumatoid arthritis and fibromyalgia. It never ceases to amaze me that some people do not know what either are. Yes, Virginia there are disgustingly healthy people out there who do not know about yucky unhealthy stuff.

So it overjoys me to read new research about my ailments. Especially when I find research that says the really lucky people who have both RA and fibro, have many more problems with RA than people without fibro.

One article is titled: Fibromyalgia Symptoms May Mimic High Disease Activity in Patients With Rheumatoid Arthritis. That title sort of says it all doesn't it? So even if I don't really have high disease activity, I will just feel like I do.

This article is from Egypt and is titled: The Impact of fibromyalgia on disease assessment in rheumatoid arthritis. I has some lovely charts and tables that compile the list of issues.

Table 2. Somatic manifestations of studied rheumatoid arthritis patients.

Somatic manifestations percentage (%)	Patients		P value
	RAF (25)	RA (25)
Widespread pain	100	28	less than 0.001
Sleep disturbance	68	32	0.011
Fatigue	92	52	0.002
Morning stiffness	56	36	0.156
Headache	56	24	0.021
Depression	88	40	less than 0.001
Anxiety	72	40	less than 0.001
Parasthesia	76	32	0.002
Cognitive symptoms	56	16	0.003
Dysmenorrhea	20	20	1
Irritable bowel syndrome	16	4	0.157

RAF: rheumatoid arthritis with concomitant fibromyalgia, RA: rheumatoid arthritis.

When I was diagnosed with both RA and fibro, my doctor told me I probably would not be able to tell which ailment caused which pain. Sometimes I can but sometimes I can't. And sometimes I just don't care.

But now that I know fibro makes my RA feel worse, I'm not going to suck it up. I think I should switch to chronic whininess. I think chronic whininess outweighs chronic pain. Some research news inspires whininess.

Do you know whats in your medical records?

Do you ever look at your medical record? The hospital I go to just switched to a new system with an electronic patient portal. I can now go in and check it regularly. Since its been active for less than six months, its needs some more data but I can still see a lot of information including visit notes from doctors, test results, etc.

In recent years, I would go get printed out copies of test results anytime I wanted. At one point I became obsessed with my blood counts and created a spreadsheet of them and then found all my previous blood tests and now have records going back to 1998. And no, my red blood counts have not recovered since chemo and have remained low.

The other day the Wall Street Journal ran an article about taking charge of your medical records. And it astounds me how few people actually look at their medical records regularly.

This is important people! Medical errors can be fatal. I know I am allergic to benadryl and prednisone so if I have any kind of reaction, I need to make it clear they cannot treatment with either - and both are commonly used to treat reactions. Never mind the fact that I am also allergic to the '-cillins';  penicillin, amoxicillin, etc.

Knowledge is power. If your doctors are not able to electronically access your records, you need to make sure you keep them up to date with all your information including prescriptions, test results, procedures, and other doctor appointments.

A big step back in the flabbiness fight

Unfortunately I had a big step back in the flabbiness fight. I really did some damage to my knee (and forgot to blog about it) when I was only trying to water the plants in the back yard and fell when (or because) my knee bent sideways. I didn't break anything but I am now the (not so) proud owner of a lovely knee brace to prevent further sideways movement.

The knee doctor gave me the lovely brace and sent me for PT and said come back in two months and we will see what's going on then. On the good side, I can do my PT at the gym for dilapidated people where I go and not have to bombard my schedule with three times a week appointments for PT. I can go once and get my exercises and then do them when I want, there or at home.. On the bad side, if I don't wear my brace, my knee keeps giving out and I have to wait until I could get an appointment with a physical therapist at the gym.

I will go for my first PT appointment shortly and hope to be able to get back to some exercising. I haven't been exercising and am very concerned about the flabbiness fight. I can't just go for a walk these days. I haven't dared to go to the gym until I saw the knee doctor. And now after speaking with the gym about my knee, their advice was to wait until I see their physical therapist and set up knee exercises before trying too much.

So I am sitting around on my ass too often. I am also closely watching my food consumption to prevent further flabbification. And my knee gives out way too often if I am not wearing the (stupid) knee brace (will I get tan lines from it?) so that I got a second smaller knee brace to wear in bed.

Okay its not cancer, but its a royal pain in the ass. Do I get some sympathy? I can just start whining?

Forcing business accountability

There is a new bill in Massachusetts which would require pharmaceutical manufacturers to disclose their costs in order to justify high prices on new medications. Hmmmm.... Do you think it would fly? I hope it would.

"An alliance of lawmakers, consumers, and health insurers is pushing for a law that would force biotechnology and pharmaceutical companies to justify their prices by disclosing how much they spend on research, production, and marketing. It also would allow the state’s Health Policy Commission to limit the prices of especially costly drugs, something not done anywhere in the country...."

"The bill cites “substantial public interest” in what goes into the prices of such medicines. Drug makers would be required to disclose, among other things, their development and marketing outlays, how much research was paid for with public funds, their manufacturing costs, and the prices of their drugs in other countries. It would also empower the commission, which is charged with holding down health care costs, to impose cost controls on some high-priced drugs."

Of course the pharma companies are not too happy about this. They claim it would reduce innovation. Okay, I get it. They don't want anyone snooping into their finances. But as far as I am concerned, if they get public funding, they need to be open about their pricing and use of the money.

If they choose not to get public funding, which they all do, then as far as I am concerned, there would need to be a bit more justification for the prices.

For decades, pharma manufacturers have been able to set their prices and the US has not negotiated with them, leaving Americans pinched by high prices. In recent years, new medications have cost tens or hundreds of thousands each year per patient for rare cancers or other ailments.

Someone has to create an onus for the manufacturers to justify their prices instead of just allowing them to ask for what they want. They try to justify it by saying their costs are high and hardly anyone pays the full prices because of insurance coverage or discounts from the manufacturers. That just isn't enough. They need to provide some kind of back up for their requests.

Okay, that's just my 2 cents, as usual.

Further addition to the cancer hall of shame

These stories just irk the crap out of me - people faking cancer to get money or sympathy. The latest is a now-former beauty queen from Pennsylvania who told everyone she had CLL (chronic lymphocytic leukemia) in 2013. But the police didn't buy it. She couldn't remember her doctor's name. Nor did she lose her hair. Now she spent the night in jail and is facing felony charges.

Nothing less than what she deserved as far as I am concerned. Fines and more jail would help as well.

I really do not understand this. People who fake diseases for sympathy? They remind me of the fakers who stand at traffic lights with poorly written signs claiming they are vets with disabilities or homeless (even though they look  nicely showered and clean), etc, begging for handouts, then ending their days in a brand new car driving home to their fancy house. There are people who do this and really are poor or disabled but their credibility has been destroyed by the fakers.

How unfortunate that some people play on the trust of others to use them. Wait that sounds like politics. Or big business. Did I say that?