I get so disappointed when I find cancer support activities lead by those who have never been diagnosed with cancer. Its a huge disappointment.
I went to visit another cancer support place/center/whatever you want to call it last week. While it was a nice place and offered a nice range of activities and support services, no one I met has ever had cancer. Some had an oncology backgrounds or extensive training, but that is not the same thing.
They have not 'walked the walk'. I don't know how they can talk the talk if they haven't walked the walk.
This is a huge frustration for me personally. I feel its right up there with someone who can't draw teaching an art class. Or the blind trying to lead the sighted.
In the process of making the appointment and meeting with their intake person I was offered a massage, tai chi, yoga class, acupuncture, acupressure, and something else I can't remember that would not help me at all. And why couldn't I just refuse instead of having to explain my medical issues?
In my perfect dream world, I would design a cancer support center where every single person in a leadership position, board members and senior staff, would be people who had been through a cancer diagnosis personally.
How can people who haven't dealt with the illness come up with appropriate activities and interactions if they haven't dealt with it themselves?
Jan 1, 2018
Dec 25, 2017
Keep your information to yourself
Every time you sign up for another store's shopping program, where you are enticed by the discounts and special offers, you are actually giving away your information. I don't consider it as much of a problem at a clothing store or the grocery, but when its the pharmacy, that becomes another story.
CVS, Walgreens, and RiteAid offer their rewards programs and they entice you to use the card because you get special prices on products and other financial gains. When you pay for your prescriptions along with shampoo and bandaids or provide personal data points such as body weight, blood sugar, etc, it becomes another story.
"Walgreens this month launched a new smartphone app that customers can sync up wirelessly with their blood glucose and blood pressure monitors so they can feed their personal health information directly into the chain’s data system in exchange for discounts.
At CVS, you can get $5 back for every 10 prescription refills — if you waive your right to health care privacy protected under the federal health law known as HIPAA. And Rite Aid is experimenting with a service that other retailers are using to collect tons of data: special lockers that you can use to charge your cell phone for free, if you’ll give up your phone number, insurance costs, and shopping preferences."
The key words in there are "if you waive your right to health care privacy protected under the federal health law known as HIPAA". I bet you didn't even realize that you waived your HIPAA protection.
Seriously? I had no idea I was waiving my HIPAA right to privacy. Until I read this article I did not know that was going on.
"When asked how Walgreens was using all that health data, company spokeswoman Mailee Garcia said the company “does not sell personally identifiable information to third parties,” but may sell de-identified information."
Garcia said Walgreens is not currently using health data to market to the customers who provide it. But the app’s privacy policy explicitly states that Walgreens may use customer data to personalize advertising. The store can also combine data entered into the health app with personal information collected by other companies to create a more robust profile of individual customers.
The policy also gives Walgreens the right to change its privacy terms at any time and says customer data will be sold as an asset if Walgreens is acquired by another company."
So now that I know all this, I will not be swiping my card when I pay for prescriptions. I will pay for prescriptions at the pharmacy without my card and then pay for other items to get the discounts with my card. Seriously its not worth my privacy about prescriptions. If it wasn't the way to get the sale prices (and I am secretly very cheap and never pay retail unless I absolutely have to), I would ditch my card all together.
CVS, Walgreens, and RiteAid offer their rewards programs and they entice you to use the card because you get special prices on products and other financial gains. When you pay for your prescriptions along with shampoo and bandaids or provide personal data points such as body weight, blood sugar, etc, it becomes another story.
"Walgreens this month launched a new smartphone app that customers can sync up wirelessly with their blood glucose and blood pressure monitors so they can feed their personal health information directly into the chain’s data system in exchange for discounts.
At CVS, you can get $5 back for every 10 prescription refills — if you waive your right to health care privacy protected under the federal health law known as HIPAA. And Rite Aid is experimenting with a service that other retailers are using to collect tons of data: special lockers that you can use to charge your cell phone for free, if you’ll give up your phone number, insurance costs, and shopping preferences."
The key words in there are "if you waive your right to health care privacy protected under the federal health law known as HIPAA". I bet you didn't even realize that you waived your HIPAA protection.
Seriously? I had no idea I was waiving my HIPAA right to privacy. Until I read this article I did not know that was going on.
"When asked how Walgreens was using all that health data, company spokeswoman Mailee Garcia said the company “does not sell personally identifiable information to third parties,” but may sell de-identified information."
Garcia said Walgreens is not currently using health data to market to the customers who provide it. But the app’s privacy policy explicitly states that Walgreens may use customer data to personalize advertising. The store can also combine data entered into the health app with personal information collected by other companies to create a more robust profile of individual customers.
The policy also gives Walgreens the right to change its privacy terms at any time and says customer data will be sold as an asset if Walgreens is acquired by another company."
So now that I know all this, I will not be swiping my card when I pay for prescriptions. I will pay for prescriptions at the pharmacy without my card and then pay for other items to get the discounts with my card. Seriously its not worth my privacy about prescriptions. If it wasn't the way to get the sale prices (and I am secretly very cheap and never pay retail unless I absolutely have to), I would ditch my card all together.
Dec 18, 2017
Spoon Theory (Or How Many Spoons Is That Worth To Me?)
Do you know about the spoon theory? No, its not something you learned in high school physics and since forgot. Its about life with a chronic illness. Christine Miserandino over at "But You Don't Look Sick".
This has come up in a couple other blogs recently and someone emailed me about it earlier this week. You can read the entire theory here but to summarize (poorly):
If you are healthy, you have an unlimited supply for spoons to get you through the day. As you start your day each task costs one spoon. This includes taking a shower, getting dressed, making breakfast, standing in line at the coffee shop, taking the stairs instead of the elevator up to your office, working straight out all morning, going to lunch, etc. Each task is a spoon.
But if you have a chronic illness you start your day with a set supply of spoons. Probably about 12. If you do too much you will run out of spoons very early in the day. If you use up too many spoons, you might have fewer spoons the next day. Or if you run out of spoons, you need to spend the rest of the day resting/recovering.
This is my life now. Every day I need to evaluate what I am going to do for the day and figure out how to use my spoons. I look at as 'how many spoons is that worth to me'. I have the list of what I want to do and what I need to do and evaluate my spoon count.
I had a very stressful, terrible day yesterday (thanks to bankers) and I didn't sleep well so my spoon count is bit low. I want to go to the gym, make four pies, and clean up for my brother's arrival with his four kids late this evening. I will be napping by 3pm.
I will rest for a bit longer this morning and attempt to go to the gym. Once I come home, I can make a pie and take a nap while it bakes. And repeat as needed.
Tomorrow is Thanksgiving which means lots of stuff to do, stretching out of spoons, and splitting what I want vs what I must do. I need to get as much rest as I can today. Each choice will require me to evaluate how many spoons each is worth to me.
This has come up in a couple other blogs recently and someone emailed me about it earlier this week. You can read the entire theory here but to summarize (poorly):
If you are healthy, you have an unlimited supply for spoons to get you through the day. As you start your day each task costs one spoon. This includes taking a shower, getting dressed, making breakfast, standing in line at the coffee shop, taking the stairs instead of the elevator up to your office, working straight out all morning, going to lunch, etc. Each task is a spoon.
But if you have a chronic illness you start your day with a set supply of spoons. Probably about 12. If you do too much you will run out of spoons very early in the day. If you use up too many spoons, you might have fewer spoons the next day. Or if you run out of spoons, you need to spend the rest of the day resting/recovering.
This is my life now. Every day I need to evaluate what I am going to do for the day and figure out how to use my spoons. I look at as 'how many spoons is that worth to me'. I have the list of what I want to do and what I need to do and evaluate my spoon count.
I had a very stressful, terrible day yesterday (thanks to bankers) and I didn't sleep well so my spoon count is bit low. I want to go to the gym, make four pies, and clean up for my brother's arrival with his four kids late this evening. I will be napping by 3pm.
I will rest for a bit longer this morning and attempt to go to the gym. Once I come home, I can make a pie and take a nap while it bakes. And repeat as needed.
Tomorrow is Thanksgiving which means lots of stuff to do, stretching out of spoons, and splitting what I want vs what I must do. I need to get as much rest as I can today. Each choice will require me to evaluate how many spoons each is worth to me.
Dec 11, 2017
The accountants rule
I have nothing wrong with accountants. They pay attention to the little details in numbers that I some how don't understand. I have an accountant I use to do my taxes and take care of my financial stuff. My husband has an MBA and he can explain all the financial stuff on a level that I need to understand.
I used to work for a company where each year when I had to present my budgets to accountants, they drew straws on who would have to deal with me. Because I wasn't enough of a numbers person for them. I know they are important. But they also can be too focused on numbers and not on people.
Now we have a problem. Big pharma companies are beginning to focus on their profits and not on creating better medications for patients. Why? Because now that the accountants are beginning to rule.
In the last few decades it has not been unusual for pharma companies, and others, to merge, move, and streamline themselves for financial reasons. Have a competitor? Buy him out, problem solved. Some one designed a good product? Buy them out and take advantage of their technology.
But now big pharma companies are taking it a step farther. They are letting their accountants take over and make BIG financial decisions to take better care of their bottom line. First they are moving to countries with lower tax rates. Then they will lose a lot of staff and potentially stifle innovation as they hire new scientists who start over in development, but they will save a lot of money over all. And example of this is Pfizer which is buying Allergan.
"Pfizer is the largest drug maker in the United States, but after striking a deal on Monday to buy Allergan, the company is on the verge of becoming Irish.
For shareholders, this may be their lucky charm. After the merger, Pfizer will be able to shift its legal headquarters from New York to Dublin and pay lower taxes, which should bolster its bottom line.
But in the process, scientists are likely to lose their jobs, innovation may suffer, and consumers could pay more for Pfizer medicines."
To me this deal sounds like only the accountants and share holders will be happy. So I must ask: What about the patients?
Maybe its time for the politicians to step forward and say the US will negotiate with pharmaceutical companies for their medications, only if they are based in the US, paying US taxes, and hiring American citizens to work there? Just an idea.
I used to work for a company where each year when I had to present my budgets to accountants, they drew straws on who would have to deal with me. Because I wasn't enough of a numbers person for them. I know they are important. But they also can be too focused on numbers and not on people.
Now we have a problem. Big pharma companies are beginning to focus on their profits and not on creating better medications for patients. Why? Because now that the accountants are beginning to rule.
In the last few decades it has not been unusual for pharma companies, and others, to merge, move, and streamline themselves for financial reasons. Have a competitor? Buy him out, problem solved. Some one designed a good product? Buy them out and take advantage of their technology.
But now big pharma companies are taking it a step farther. They are letting their accountants take over and make BIG financial decisions to take better care of their bottom line. First they are moving to countries with lower tax rates. Then they will lose a lot of staff and potentially stifle innovation as they hire new scientists who start over in development, but they will save a lot of money over all. And example of this is Pfizer which is buying Allergan.
"Pfizer is the largest drug maker in the United States, but after striking a deal on Monday to buy Allergan, the company is on the verge of becoming Irish.
For shareholders, this may be their lucky charm. After the merger, Pfizer will be able to shift its legal headquarters from New York to Dublin and pay lower taxes, which should bolster its bottom line.
But in the process, scientists are likely to lose their jobs, innovation may suffer, and consumers could pay more for Pfizer medicines."
To me this deal sounds like only the accountants and share holders will be happy. So I must ask: What about the patients?
Maybe its time for the politicians to step forward and say the US will negotiate with pharmaceutical companies for their medications, only if they are based in the US, paying US taxes, and hiring American citizens to work there? Just an idea.
Dec 5, 2017
How Generous!
Back in September, I blogged about the lovely 'gentleman' who bumped up the price of a drug from $3.50 per pill to $750 because they felt like it essentially. Because of a bit of ensuing 'bad press', they then announced they would reduce the price but never said how much.
Now they have finally made a decision on their price decrease. It will be a generous 50%. So since they raised the price somewhere around 5000%, the 50% decrease will really be about 2500% increase from the original price.
"Still, even a 50% discount would only bring the price for hospitals down to $375 per 25 mg pill.
The typical Daraprim dosage is between 50 mg and 75 mg a day for one to three weeks and can be followed by an additional 25 mg a day for four to five weeks if needed, according to the FDA. So even with the discount, a normal course of treatment for toxoplasmosis could cost between $5,200 and $36,700."
I still don't like this guy and don't think he's generous.
Now they have finally made a decision on their price decrease. It will be a generous 50%. So since they raised the price somewhere around 5000%, the 50% decrease will really be about 2500% increase from the original price.
"Still, even a 50% discount would only bring the price for hospitals down to $375 per 25 mg pill.
The typical Daraprim dosage is between 50 mg and 75 mg a day for one to three weeks and can be followed by an additional 25 mg a day for four to five weeks if needed, according to the FDA. So even with the discount, a normal course of treatment for toxoplasmosis could cost between $5,200 and $36,700."
I still don't like this guy and don't think he's generous.