from Teri's Keyboard

Verification for technorati

5UD3PWE4BMHZ

Deleted from Squidoo for Honest Ratings of Migraine Lenses

Have any of you ever visited Squidoo? It's a fabulous concept. It used to be a fabulous network site. On Squidoo, you can create what they call lenses, pages about pretty much any subject you like. You can add text, images, links, Amazon links, etc.

A couple of years ago, I created a couple of their lenses about Migraines and headaches. Recently, Google alerts brought some troubling Squidoo lenses to my attention. When I went to the site and looked, I was dismayed and disappointed. Lenses for The Migraine Relief Guide were all over the place. So were lenses for other so-called "cures" and snake oil.

When I saw all of these lenses, I exercised one of the so-called privileges of being a member - I rated them, I rated them at one star out of five. I rated them honestly!

A few days later, when a couple of friends visited, we discussed this. They logged onto Squidoo and did the same thing. That brought our accounts under scrutiny, and it should have, because it looked as if I had multiple accounts and was messing around with their ratings.

So, I followed their protocol and asked for a review. I got their response this afternoon. Here's what they had to say:

Hi Teri, I'm showing you rated a long list of migraine related lenses as 1 star - we can only assume in an attempt to get your own lenses to rank highly.  That abuse of our rating system is a direct violation of our TOS.

Now, their terms of service do NOT say that you can't give low ratings to a lot of lenses. They don't say you have to lie to avoid being banned. Their terms of service DO say not to spam.

So, I'll leave you with this question:

Is it right to delete my lenses for honest ratings by not get rid of all the spammers?

Live well,

30 Things About My Invisible Illness You May Not Know

Anyone who has Migraine disease or another headache disorder knows what it's like to live with an invisible illness. People can't see our illness. There are no outward signs. No physical scars, canes, wheel chairs, or any of the other outward signs that can alert people that a person is living with an illness.

Invisible illnesses are easy for "healthy" people to ignore. Unfortunately, so are the difficulties of those who live with these diseases. This adds to the burden of disease and makes lives even more difficult.

Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a "meme," 30 Things About My Invisible Illness You May Not Know. So, here's my meme...

1. The illness I live with is: Migraine disease (mainly. I have others as well).
   
2. I was diagnosed with it in the year: 1960.
   
3. But I had symptoms since: I can't remember a time without them.
   
4. The biggest adjustment I’ve had to make is: accepting that I sometimes have to slow down or just stop for a few hours or even days.
   
5. Most people assume: that Migraines are "just headaches."
   
6. The hardest part about mornings is: I hate mornings. ;-)
   
7. My favorite medical TV show is: Strong Medicine (no longer running) and House
   
8. A gadget I couldn’t live without is: my computer!
   
9. The hardest part about nights is: occasional insomnia.
   
10. Each day I take *_32_* pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: use meditation, aromatherapy, and more.
    
12. If I had to choose between an invisible illness or visible I would choose: visible.
    
13. Regarding working and career: I am fortunate to be able to work from a home office, mainly on my own schedule.
    
14. People would be surprised to know: that I am in some type of pain every day.
    
15. The hardest thing to accept about my new reality has been: limitations.
    
16. Something I never thought I could do with my illness that I did was: make a difference for others with the disease.
    
17. The commercials about my illness: are few and inadequate.
    
18. Something I really miss doing since I was diagnosed is: impossible to say since I was so young.
    
19. It was really hard to have to give up: going all night if I wanted to.
    
20. A new hobby I have taken up since my diagnosis is: impossible to say since I was so young.
21. If I could have one day of feeling normal again I would: not know what to do with myself.
    
22. My illness has taught me: perseverance and to not give up.
    
23. Want to know a secret? One thing people say that gets under my skin is: people thinking I can take a couple of Tylenol and "get over" a Migraine.
    
24. But I love it when people: actually ask questions and want to understand.
    
25. My favorite motto, scripture, quote that gets me through tough times is: "You must become the change you wish to see in the world" – Mahatma Gandhi
    
26. When someone is diagnosed I’d like to tell them: learn all you can about this disease, then take charge of your health and your health care.
    
27. Something that has surprised me about living with an illness is: how many people come up with "cure" scams to make money from us.
    
28. The nicest thing someone did for me when I wasn’t feeling well was: stand in the shower behind me and wash my hair for me.
    
29. I’m involved with Invisible Illness Week because: if we're to make progress, we must speak out and keep speaking out to educate people.
    
30. The fact that you read this list makes me feel: that we CAN make a difference!

With a meme, at this point, I ask other bloggers to participate by answering these questions on their blogs to keep this going. I'm going to ask a group of Migraine bloggers I communicate with to accept this meme and keep it going. So, all of you Migraine and headache bloggers in my group, be ready!

You can find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com.

Live well,

Follow me on or

The New York Times, Ethics, and Accountability

Yesterday, "Kennedy's Rough Waters and Still Harbors" appeared in the New York Times. Written by Michiko Kakutani, it's a review of "True Compass; A Memoir" by the late Senator Edward Kennedy.

The NYT is well known for their book reviews, so you may wonder what the problem is with this one. The problem is that it wasn't to be published until September 14. By publishing it early, the NYT essentially broke their promise to wait until the 14th. They "broke the embargo."

Members of the media often receive embargoed information from various sources -- press releases, books to be reviewed, and more. This is done as a courtesy to the media, to allow more time to cover the embargoed material well and thoroughly without having to rush to meet a deadline. Using this NYT review as an example, the review should have been written, photos added, edited, and appropriate space reserved for it to appear on September 14.

Many other news outlets had this book for reviews and articles to be released on the 14th, but the NYT beat them to the punch by more than a week. Some may say that it's a competitive business, and the NYT is only doing what they need to do to compete. I simply can't agree with that.

I often receive embargoed content and advance copies of books for review. If I were to break an embargo and publish early, I'd "lose my credentials" with that source. In other words, I'd be removed from their media list, and I'd never be given material in advance again.

My guess would be that those in charge at the NYT aren't concerned about that. After all, they're THE New York Times. In a way, that's part of my point. They ARE THE New York Times, and as a supposed leader in the industry, they should be upholding journalistic ethics and setting a good example for the journalistic community.

Those at the NYT who made the decision to publish this review early probably won't be held accountable for this breach of ethics. That's a shame because it just reinforces their bad behavior.

I'm only one person, and I'm sure they won't care, but I'm going to call the NYT this afternoon. I'm going to cancel my subscription to their Sunday edition. For whatever it's worth, I'm not going to give any more money to a company that exhibits such lack of respect, lack of ethics, and poor judgment.

Live well,

ARE Generics the Same?

The next time you're getting medication for your Migraines or for anything else, and someone tells you, "Generics are just as good as brand names," you might want to do some checking. We've all heard it, haven't we? You know the drill, especially if an insurance company is involved...

"Buy the generic..."

"You can save money with the generic..."

"The generic is just as good..."

"The generic has to have exactly the same active ingredient as the brand name. The FDA says so."

"The FDA says so?" Do they really? Well, not exactly. When it comes to bioavailability, by the current FDA regulations, generics can be anywhere from 20% below to 20% above the brand name. (Bioavailability is the rate at which a medication is rate at which a substance (such as a medication) is absorbed into the body and made available at its site of action.) If your pharmacy happens to fill your prescription with a generic from one company one time, and another company the next, there could be up to a 40% variance.

To me, that doesn't sound the same at all.

Live well,

PS: I learned about this while researching an article about problems with different topiramate (Topamax) generics. If you'd like to read that article, you can find it HERE.

I've Been in Medco Hell

I know I should be thankful to have insurance that covers prescription medications. And I keep telling myself that. Between Migraines, hypertension, arthritis, coronary artery disease, diabetes, and more, our pharmacy bills can be astronomical.

Our prescription coverage "encourages" us to order 90-day supplies of our meds through mail-order giant Medco. I say "encourages" in quotes because we're actually penalized if we use a local pharmacy for prescriptions that we refill on a regular basis. The refills cost more when filled locally.

Over the years, our copayments have gone up and up. Today, for a 90-day supply of a brand name drug, we pay $45 OR 25% of the cost of the prescription, whichever is MORE.

Anyway, all of that's background to this past week spent in Medco hell. I had been filling my Armour thyroid prescription locally because it's very inexpensive. A few months ago, Medco contacted my doctor and got him to transfer the prescription to them. Now, when I tried to fill it for just the second time, there is a shortage of Armour, and they can't fill it. They ask my doctor to switch me to a synthetic thyroid. He refuses. They jerk us around all  week, THEN call me and essentially tell me I'm on my own, to get a new prescription and get it filled wherever I can.

Now, I can understand that they're having a supply problem. What I can neither understand nor accept is that it took them all week, several communications with my doctor, three emails and two phone calls from me only to finally dump the problem back in my lap. Had they told me this on Monday, the problem would have been resolved. But, no. They waited until late Friday afternoon when doctor's offices are closed for the weekend.

At times such as these, I do not feel grateful for prescription drug coverage.

Live well,

Final Note on Migraine Relief Guide

For those of you who have been following the saga of my purchase of the Migraine Relief Guide, here's my final report — I received a full refund of my $37 today. Nobody ever replied to my email, but when I filed a dispute with PayPal, a refund was issued.

Now, I don't want you to think that all I did was grip about the book. I read it beginning to end, twice. Even took notes and wrote a review of the book. The review is based on the content of the book, nothing else. If you're interested in reading the review, here's the link: The Migraine Relief Guide: A Review.

Live well,

Another Migraine Relief Guide Update

I thought it time to update you on my progress, or lack there of, in getting a refund from www.TheMigraineRelief.com for their 65-page Migraine Relief Guide.

After sending them three — count them, three — emails, I filed a dispute with PayPal this evening. PayPal will contact the payment service they use since payment was received through them. They have 20 days to respond. I have 20 days to await their response and to accept or reject it (if I get a response) or "escalate" it to PayPal for their determination of whether to force them to give me a refund.

Will definitely keep you posted!

Live well,

Update on TheMigraineRelief

As I shared with you previously, one of our members on the MyMigraineConnection.com forum asked about the poduct/program promoted at www.TheMigraineRelief.com.

Not liking to comment on something I've not seen or tried myself, I went to the site. I woud doubtful, but since the "guide" was guaranteed, decided to try it. There were glitches with the download, but I finally got it.

Total waste of money for me. So, I went to the site, and emailed them for a refund. Keep in mind, this is what is on their site about their guarantee:

 

So far, I've emailed them twice for a refund. So far, they haven't even had the courtesy to reply. I paid via PayPal. If I don't get my refund by Monday, I'm going to file a dispute with PayPal and see what other avenues i have to file a complaint.

Live well,

Follow-Up on TheMigraineRelief

Yesterday's issue with having purchased the Migraine Relief Guide but not being able to download it has been resolved.

I received an email last night, apologizing for the problem and providing a download link.

The question I think many of you have now is — Just what did I get for my $37.00? Good question.

There was the 65-page e-book, the Migraine Relief Guide, a pain relief e-book, a Migraine tracker, and a recipe book. Now, I never did get the recipe book. Even on their download page, that link is broken. But then, it's the Migraine Relief Guide that you're paying for. The others are "free bonus material."

Some people believe in the saying, "You get what you pay for." With the advent of the Internet and e-books, this saying is quickly going by the wayside. Since the Migraine Relief Guide is supposedly what I paid $37.00 for, I'll focus on my problems with it, being general so as not to violate her copyright...

• $37.00 for a 65-page e-book is absurd.
• Some of the information in it is outdated.
• Some of her suggested "remedies" have no scientific basis.
• There's nothing new or unique in it.

You can find better and more current information online.

If you want to buy a book, you can go to Amazon and spend $15 or less for a book that will have more and better information than I paid $37 for in this thing.

This supposedly has a money-back guarantee. Their site says, "If you're not satisfied, I will return your money." I emailed them today, requesting a refund. Again, I'll keep you posted.

Live well,