~ ~ ~ Up, down, and probably inside out...

A new year... a new job

With his new year has come an unexpected, but pleasant change for me. Nearly seven years ago, I started the headaches and Migraines site at About.com. It was a great opportunity, and I value the time I spend working there. Still, there comes a time when even good things come to a close, and I left About last month.

That doesn't mean, however, that I'm not continuing to write and work toward better patient education and support or that I won't be continuing my advocacy efforts. I'll still be writing here, and I've joined the HealthCentral Network as the Lead Expert Patient at MyMigraineConnection. At MyMigraineConnection, I'll be writing the same type of articles you're used to, blogging, and participating in the forum. When you have a few minutes, come say "Hello!" Visit MyMigraineConnection.com.

Life's been crazy...

Oh, my, but it's been far too long since I posted here!

Today, I'm tired, confused, and more than a bit frustrated. Let's see if I can keep this short. In 2004, a routine EKG before eye surgery indicated that I could have a heart problem. After a stress test and cardiac catheterization (that horrible test where they insert a catheter into an artery in the groin and run it up into the heart to see inside the blood vessels), it was determined that a very small branch of the right descending coronary artery was blocked 80%. It was too small to do angioplasty and insert a stent, so we went with managing the issue with medications. I had occasional angina, but it was no big deal.

About 8 weeks ago, I was having pressure and a burning feeling in my chest and upper arms, an aching in my lower jaw, and pain above my shoulder blade -- all symptoms of heart attack in women. Of course, it was on a weekend, so off to the ER we went. They informed me that what I was calling pressure and burning, they call chest pain. It was angina, but it was different than what I'd had before. They got it stopped, but I had to spend a night in the hospital. The cardiologist on call stopped in the next day, spent about two minutes listening to my chest, told me I had to stay another night for a stress test, and left. A bit later, the nurse told he he'd gotten to her station and, upon discovering that I'd been there for 24 hours, decided to prescribe 2 additional meds and send me home to do the stress test as an outpatient.

I made a 6-week follow up appointment with my regular cardiologist. As soon as I started taking one of the new meds, a beta blocker, I was short of breath with almost no exertion. That's a common side effect of beta blockers for people who have asthma. Decided to stick it out and see if it stopped. It didn't. Explained that to my cardiologist who replied that he didn't want to change meds at that point because he wasn't sure if the shortness of breath was the med or my heart. He wanted to repeat the cardiac catheterization. Oh, joy. Not.

He did the test on Thursday. Sedation was optional. I opted OUT so I'd be aware of what was going on and able to talk to the doctor. He was told that I wanted him to talk to me after the test. After the test, all he told me was that here were no changes needing angioplasty and stenting, but that there was atherosclerosis through most of the vessels in my heart. He then walked out. I was still on the table and in no position to go after him for more information. He told my husband that there was "diffuse plaque and larger pieces of plaque" throughout the vessels, and that he could foresee a piece of that plaque breaking off and causing me major problems in the future.

Now, the purpose of the test was to see if the shortness of breath is due to meds or my heart. He didn't address that with my husband or with me. I asked on of the nurses in the recovery area. She asked him about the beta blocker, and he told her to tell me that he wasn't going to change my meds; that I could talk to my family doctor or see him in two months to discuss the issue again.

WHAT? Is my family doctor supposed to be an expert on adjusting cardiac drugs? What about this atherosclerosis? Is there something I can and should be doing about it?

Now, mind you, that test was very, very painful. I declined any sedation so I could talk to him, but he didn't see fit to really tell me anything; nor did he give my husband any helpful information. So, essentially, I put myself through hell for this test which costs nearly $6,000 (about $1,200 of which is going to come our of our pockets), and don't know what to do now. No information from him, and I'm just supposed to ask my family doctor?

To say that I'm pissed off is putting it mildly. Part of it is the frustration of feeling that I have so few choices. There are several cardiologists here, BUT they're all in the same practice group. My only option if I want someone to behave like a professional and compassionate human being would be to go out of town for care. That doesn't seem like a good choice to me. It seems to me that I need to have a cardiologist here, not out of town.

So, that's what's going on here. How is YOUR life going?

I don't think so!

Here's one thing that increases the cost of medical care!

In today's mail, I received a bill from Marietta Memorial Hospital in Marietta, Ohio. What's wrong with that is that I've never been a patient at that hospital or had any tests run that would have been run through their laboratory. Never. Another thing that's wrong about my having received this bill is that I've received this bill three times now.

This bill is for care received by my mother months ago. My mother is an adult. She does not live with me. I am not responsible for her bills. The first time I received this bill, I called the hospital and explained this to them. They told me that her doctor had told them to list me as the "guarantor" on the bill. He probably got my name and address from her medical history because I'm her emergency contact and have her medical power of attorney so I can authorize her care if she's incapacitated. I explained to both her doctor's office and the hospital that I am not the guarantor, that she has Medicare as her primary insurance and Medicaid to be billed secondarily. So, there's another factor. Since they accepted Medicare and Medicaid, they're bound by law to NOT seek private payment, be it from me or my mother. They were supposed to remove my name and address from her account. Obviously, they did not.

The second time I received this bill, I called the hospital and repeated the process, albeit less politely. You'd think they'd have taken care of this if for no other reason than to not have to deal with me again. Wrong!

So, today, here's this damned bill again, and I royally ticked. They're stressing me and they're actually violating the laws on Medicare and Medicaid billing. Yes, I called their billing department again. Once again, I was told that they'd take care of it, but I don't believe them. So, for good measure, I called the hospital administrator's office. My next step? I'm calling Medicare and Medicaid!

It's painfully obvious that they either don't know or don't care about the fact that things like this take up people's time, not just mine but theirs. That means that such things also increase the cost of health care. Not to be too harsh or offensive, but does anyone else ever wonder why such stupidity isn't a crime? Grrrrrrrrrrrrrrrrrr.

The Nourishing Meme

Webster defines a meme as "an idea, behavior, style, or usage that spreads from person to person within a culture."

Wikipedia says, "coined in 1976 by Richard Dawkins, refers to a unit of cultural information that can be transmitted from one mind to another. Dawkins said, Examples of memes are tunes, catch-phrases, clothes fashions, ways of making pots or of building arches. A meme propagates itself as a unit of cultural evolution analogous in many ways to the gene (the unit of genetic information).

My precious friend Phylameana lila Désy, who is the Guide to Holistic Healing at About.com and the owner of Spiral Visions, has asked me five questions intended to promote a "Nourishing Meme" in the blogosphere. This meme originated with Joanne Hay.

The five questions, with my responses, are:

1. What is the most nourishing thing you frequently do for yourself?
   Every day, I take at least 30 minutes of "me time" to pray and meditate. This is quiet time that is never to be interrupted. The phone is off the hook, and my husband doesn't interrupt me. One of my favorite things to do during this time is to focus on a lovely golden yellow citrine sphere I have and visualize exhaling dark negativity and illness and inhaling the golden rays of God's healing energies.
2. For your health, what will you never compromise on?
   Good health care. I firmly believe that optimal health is achieved only when doctors and patients work together as treatment partners in an atmosphere of mutual respect, and I will settle for nothing less. A doctor who doesn't have time to spend with me, won't answer my questions, or who won't pay attention to what my body is telling me is not my doctor very long.
3. Where do you get most of your health information?
   From a combination of sources -- my doctors, medical journals, colleagues, and the Internet.
4. What single whole food or supplement has turned your health around the most?
   Coenzyme Q10. Coenzyme Q10 has turned out to be an excellent Migraine preventive for me. It also has increased my energy levels and is good for my heart.
5. What is your favorite natural therapy?
   Aromatherapy.

Now comes the part where I ask others to participate in the Nourishing Meme and answer these same questions on their blogs. So, I'm asking Kerrie at The Daily Headache and and Melanie with her blog Life in my head. I hope everyone will find this as thought provoking as I have. You don't have to be invited to participate. Feel free to do this meme on your blog, and if you do, please let me know!

Gotcha, Active Periodicals!

Yesterday, I blogged to vent my frustration with the abuse and harrasment being perpetrated by Active Periodicals. Today, I must make an admission...

I didn't know as much about the Do Not Call List as I thought I did. I thought a company with whom we have a business relationship was exempt and could continue to call. Wrong! There's an exception to that. Allow me to quote the Do Not Call F.A.Q. from the FTC site:

A telemarketer or seller may call a consumer with whom it has an established business relationship for up to 18 months after the consumer's last purchase, delivery, or payment - even if the consumer's number is on the National Do Not Call Registry. In addition, a company may call a consumer for up to three months after the consumer makes an inquiry or submits an application to the company. And if a consumer has given a company written permission, the company may call even if the consumer's number is on the National Do Not Call Registry.

One caveat: if a consumer asks a company not to call, the company may not call, even if there is an established business relationship. Indeed, a company may not call a consumer - regardless of whether the consumer's number is on the registry - if the consumer has asked to be put on the company's own do not call list.

YES! Gotcha, Active Periodicals! I had recorded the date and time of one other call, one from August 10. Thus, not only was I able to file a complaint with the FTC, I was able to file two of them, one for August 10 and one for yesterday, September 2.

Here's my promise to Active Periodicals... I will file an additional complaint with the FDA every single time you call me from now on. Don't believe me? Watch me! One more thing to the people at Active Periodicals. You might want to do a Google search on your company. I did, and anyone who does with all the negatives that are there these days is very unlikely to do business with you.

If you buy from Active Periodicals, they'll harass you, headache or not!

I know this is a bit off-topic, but I have a horrid tension-type headache today, and a sales person for Active Periodicals just got on my last nerve!

If you never take another piece of advice from me, take this one! Never do business with Active Periodicals. They're one of those companies that work for magazine publishers whose magazines aren't getting the readership they want. They offer you about half a dozen magazines -- free. You don't pay the regular subscription rate, just the postage. Now, I don't know that I believe that, but when I sat here and did the math, I could get subscriptions to magazines I really like and pay far less than the subscription rates. So, I agreed, and a modest amount is debited from my checking amount each month for two years, and I get the magazines for four years.

Now, here's the problem. They keep calling me. Daily sometimes, but at least a few times a week. They say they want to thank me for my business and be sure I'm getting my magazines. But, what they really want is to thank me by "offering me a special offer." In short, they want to sell me more magazines. I've asked them to quit calling. I called their customer service phone number that's on my bank account statement. Customer service informs me that the sales department is separated from them, that customer service will never phone me, that they  have no control over who the sales department calls.

So, I just had another phone call from Nancy at Active Periodicals. I tried to be polite. Here's how the conversation went:

Me: "I've asked several times not to be called by your company."
Nancy: "We're exempt from the Do-Not-Call List."
Me: "I know the exemptions to the list. I don't want to talk to you."
Nancy: "I'm not asking you, I'm telling you."
Me: "Xxxxx you, baby."

Then I hung up. Yes, I know I shouldn't have lost my temper. My head hurts, and I lost it. I X'd out the word, but just so you know, it was a mild expletive. Not really nasty or profane.

I repeat, Steer clear of Active Periodicals unelss you want to be mercilessly harrassed.

Beware of calls from Active Periodicals

Unless you want to be harrassed, steer clear of Active Periodicals!

I want to share this with you so you can learn from my experience rather than going through this mess yourself. A year or so ago, I received a phone call from a company called Active Periodicals. Their pitch was that they work for magazine publishers whose magazines aren't getting the readership they want. They offer you about half a dozen magazines -- free. You don't pay the regular subscription rate, just the postage. Now, I don't know that I believe that, but when I sat her and did the math, I could get subscriptions to magazines I really like and pay far less than the subscription rates. So, I agreed, and a modest amount is debited from my checking amount each month for two years, and I get the magazines for four years.

So far, so good.

BUT, I keep getting calls from Active Periodicals. They start out friendly enough, asking if I'm receiving my magazines with no problem. Then they tell me that since I'm such a good customer, they have a special offer for me. The special offer turns out that they want to add more magazines and extend my payments. I'm not interested. I've told them repeatedly that I'm not interested. I'm on the national Do Not Call list, but it doesn't apply to companies if you have an existing business relationship with them.

One of their staff called me yesterday. I started to ask one more time that they quit calling me. I got so far as, "I've asked before that you stop calling me and." Click. The person hung up on me in the middle of their sentence. I tried to call them back on the number that had shown on my caller ID, but got a recording that the number is no longer in service. Strange. So, I pulled a checking account statement and called the 800 number on it associated with the monthly debit. I asked to speak to a customer service supervisor. She looked up my account, and I told her what happened. She told me that those calls don't come from customer service, but from their sales department, and she could tell them to stop calling me, but as until I've made my last payment, they'd keep calling whenever they wanted. She was so obnoxious that I almost prefer the person who hung up on me. When I told her that if they called me again, I'd have my bank stop making payments to them, she told me to go right ahead, and that they'd turn me over for collection and sue me. A real piece of work.

If you do a web search on this company. you find lots of message boards filled with complaints about them. Attorneys General have sued them in some states.

So, beware! Active Periodicals is a company without morals or ethics. If you do business with them, your reward is being harrassed.

Teaching my granddaughter about Migraines

Educating Migraineurs is something I do every day. There are times when it's more difficult than others, partly because I know all to well the pain and frustration that accompanies Migraine disease.

A recent Migraine education session was the most difficult ever because the Migraineur was my nine-year-old granddaughter. Alex (Alexandra) had her first Migraine when she was two and a half. Becky, her mother, is a Migraineur too and when Alex was crying and holding her head, shying away from light, and wincing at loud noises, Becky recognized the signs. Alex's pediatrician confirmed Becky's fears.

When I was visiting a few weeks ago, Alex came home from Bible school not feeling well. She said her tummy was upset, and she didn't want any lunch or even anything to drink. It was a very hot day, and it had been very hot at Bible school, so everything was attributed to that at first. She finally told me that light was bothering her and her head hurt. She had a Migraine. She didn't do much the rest of the day, and we were all supposed to go out to dinner that evening to celebrate her other Grandma's birthday. Although I offered to stay home with her, Alex insisted on going to dinner. By the time we got to the restaurant, she was feeling bad enough that her father had to take her home.

The next day, I talked with Becky, and we decided that Alex is old enough to start learning about Migraine disease. We hope that, by educating her, we can help make growing up with Migraines easier for her than it was for either of us. Becky decided that I should do the talking while she listened in...

I can't believe it...

Well, my darling niece Jessica is a married lady. She graduadte Magna Cum Laude, Honors Scholar, from Mount Vernon College in Ohio a few weeks ago. Today, she got married, and she and her new husband are off on their honeymoon.

Where do the years escape to? It seems just yesterday that she was an infant in arms and her parents were sitting in our living room asking John and me if we would take her and raise her if anything happened to them. I remember John offering to go ahead and keep her then.

I wish Jessica and Mitchal many years of love, companionship, and passion. Marriage isn't easy. It's a growing experience, and one of the ways in which most of us must grow is in learning to truly put the other person ahead of ourselves. It isn't a 50/50 proposition; it's 110/110.

Jessica, we love you! I'm sorry a Migraine kept me away from your wedding. Your uncle John loved being there to see you get married.

Mother's Day, Don't Forget Yourself.

The approach of Mother's Day is always a thoughtful time for me, but not so much in the "traditional" way. Maybe it's because I prefer verbs to nouns, actions to things...

The definition of mothering doesn't necessarily involve giving birth. More accurately, mothering means attending to the needs and comforts of someone. In today's society, one role of a mother that has become less prominent is that of family healer. In times past, when doctors were few and far between, it was part of the mother's role to tend to the health of her family. Women knew about herbs and used them to care for people. They knew first aid, basic injury care. They knew how to take care of a fevered child and help another woman through childbirth. If you watch older movies, you'll often see the wife of a rancher called to care for a ranch hand who's been injured or a woman on a neighboring ranch who's about to give birth.

Now that doctors are plentiful in "developed countries," these duties no longer fall to women. Yet, it's usually the woman in the family who makes the doctor's appointments and comforts family members when they're hurt or ill. It's usually "Mommy" young children run to when they have a boo-boo.

To me, there's yet another side of "mothering," and it's something we need to do for ourselves. It's tending to our own emotional and spiritual health. With different belief systems, there's no right way to do this, but taking time out for our own needs allows us to be healthier, stronger, and more complete. It allows us to be in better shape for everything we do, including tending to the needs of others.

So, whether you're a mother in the sense of having given birth or not, please consider giving yourself a priceless Mother's Day gift, a gift of time to attend to your own needs and comforts. Set aside at least 30 minutes every day that's your time, totally uninterrupted, for whatever use you want. It can be prayer, meditation, a bubble bath. Be good to yourself. We all deserve as much.