Getting Migraine Care - My Turn To Vent

By now, I hope everyone who reads this blog knows that I care deeply about others with Migraines and their problems with getting treatment. Still, I'm seeing a trend that really bugs me.

What I'm seeing is Migraineurs who talk and talk about needing better care, but expect everything to be easy and essentially just handed to them. Let me explain. There are two main issues I'm seeing discussed:

1. Finding a good doctor. Too many people expect to find a real Migraine specialist very close to home. One woman lives about an hour's drive from one of the top Migraine specialists in the country, but says that's just too far away.
   
   Too far? Lots of people would be jumping with joy if a good specialist were that close to them. If you live in a big city, it can take an hour just to drive from one side of the city to the other.
   
   Truth be told, when I see someone saying such things, I can't help thinking that if their Migraines were really as bad as they say they are, they'd make that drive.
   
   
2. If it's not covered by insurance... Let me preface this by saying that I fully understand that some of us simply cannot afford doctors and medications not covered by our insurance. That's not the situation I'm talking about here.
   
   I'll use a friend of mine as an example of the type of situation I'm talking about... Jane (obviously not her real name) has horrid Migraines that keep her in bed for days at a time, usually three or four times a month. Jane and her husband both have great jobs that pay very well.
   
   Jane won't go to a Migraine specialist because there are none in her insurance network, so her insurance company won't pay for it. When her current neurologist suggested Botox to her, she wouldn't do it because, again, her insurance company wouldn't pay for it. Jane flat out told me that they could afford both the specialist and treatment not covered by insurance, but it would mean "cutting back."
   
   Now, for me, "cutting back" would mean cutting back on essentials, but for Jane, it might mean cutting back to two or thee cars instead of the five they have... cutting back on cable -- right now they get every cable channel available... actually cooking a meal instead of ordering food delivered or going out at least five nights a week... fewer designer clothes... and so on.

Many of us with "normal" incomes could trim some extras from our budgets to get to a specialist or pay for medications that aren't covered by insurance -- IF we were truly dedicated to getting better and having a better quality of life.

My insurance company won't pay for Maxalt, but it's the med that works best for me when I get a Migraine. So, I eat out less, but fewer clothes, rent DVDs instead of going out to the movies. And that's OK with me. No, I don't think it's right that my insurance won't cover Maxalt, but all appeals have been denied, and there's just no changing that. Rather than moan and groan about my insurance company... rather than being sick in bed every time I get a Migraine... I suck it up, take responsibility for my health, and do what I need to do.

How about you?

Shalom,
Abi

December Migraine Blog Carnival

Hello, Fellow Migraineurs!

The December edition of the Migraine Disease and Headache Blog Carnival is up, and it's a great one!

This month's theme is "Advice on and experiences with holiday season stress. I hope you'll take some time to go visit the carnival and read the posts.

The carnival this month is hosted by Teri Robert on MyMigraineConnection.com. To visit this month's carnival, JUST CLICK HERE!

Shalom,
Abi

Alternative Therapies for Migraine: October 09 Migraine & Headache Blog Carnival

The Headache & Migraine Disease Blog Carnival has been created to provide both headache patients and people who blog about headaches with opportunities to share ideas on topics of particular interest and importance to us.

The theme of the October carnival is Alternative therapies - your experiences (good or bad), thoughts about trying them or any other take on the subject.

This month's carnival has a lot of wonderful information about alternative, aka complementary, therapies for Migraines and headaches. It's well worth your time to go take a look!

Visit the Alternative Therapies for Migraine: October 09 Migraine & Headache Blog Carnival.

Some important Migraine posts

Namasté, my dear readers!

Although my own Migraines and daily life haven't left me much time for blogging recently, I've been thinking about everyone.

In lieu of trying to put together the required brain cells to blog today myself, I thought it would be a nice change of pace to share with you some of the blogs I've enjoyed lately. If you missed them, this will give you another chance to read some words of wisdom...

• On Somebody Heal Me, Diana is reminding everyone how urgent it is to speak up about some of the new regulations being considered about medications containing acetaminophen. See Reminder: Take Action on Proposed FDA Ban on Prescription Narcotics.
  
  
• At Her Life in a Nutshell, Joanna observed Invisible Illness Awareness Week by posting 30 Things About My Invisible Illness You may Not Know.
  
  
• New blogger Jon of Just a Migraineur posted an interesting entry on Searching Migraine Sites.
  
  
• On MyMigraineConnection, Teri Robert blogged Interview with Cindy McCain: Migraine Sufferer, Advocate. And I must note here that I'm extremely envious of Teri getting to sit and personally talk with Mrs. McCain!

I know I didn't get to everyone, and I hope you'll forgive me. Right now, my head and my family call!

Shalom,
Abi

Cindy McCain, Migraine Advocate

Last week was a great one for all of us with Migraine disease. We've been wishing for ages for a Migraineur who is very visible to the public to take up our cause, and it has happened at last.

Cindy McCain, wife of Senator John McCain, came forward last week. She not only shared about her own situation with Migraine, she came forward to advocate for all of us.

Author and patient advocate was there and interviewed Mrs. McCain. Among other things, Mrs. McCain told Teri,

"I'm going to put together an action committee to go door-to-door in Congress, particularly the Senate, to make them understand... to make them understand how little research there is, the huge number of people impacted... to make them understand what the economic problems caused by Migraine are too. We need to testify in front of Congress."

Sounds good to me! I hope you'll take a few minutes to read what else she told Teri during the interview. You can find it in Interview with Cindy McCain: Migraine Sufferer, Advocate.

And to Teri, thanks for always being there to represent us and get us all the information possible! Oh, and thanks for allowing me to use your photo!

Namasté,
Abi

The AHDA and Migraine Research - We CAN Help!

Hello! I know I've been remiss about posting, but family and personal matters have had me busy, busy, busy.

Anyway, this is to important to miss...

One of the biggest hurdles we face regarding Migraine treatment is the lack of solid research into the cause of Migraines and just what happens when we have a Migraine. Although there's been good progress, it's nowhere near that of some other diseases or what we need. That kind of research needs to be conducted so the researchers who are trying to develop Migraine and headache treatments have the essential knowledge to do their work.

The Alliance for Headache Disorders Advocacy (AHDA) was formed from this need and a 2007 event called Headache on the Hill (HOH). During that event, doctors, researchers, and patient advocates went to Washington to speak to members of Congress about this lack of NIH funding.

After HOH, the AHDA was formed, and at the appropriate times, they called on patients, family members, friends, anyone who cared to go to their web site and send emails to their members of Congress. They worked hard to make it so easy for us that it only took a matter of minutes to send those emails. The basic emails were already written, all we had to do was add any personal plea we wanted to make, and click a button.

Headache on the Hill is coming up again the end of this month. Migraine patient advocate Teri Robert tells us that yes, the AHDA will need our help again. They will need us to send emails, but as with most things political, there's just no way to tell exactly when that will be. It's possible that the AHDA will have very little warning of when we need to write to impact funding.

For that reason, it's very important that we be registered for the AHDA mailing list. When the need arises for us to send emails, being on their mailing list means that we'll get emails when we need to email Congress. Those emails will tell us what the issues are and have links to take us directly to a web page to send our emails.

Please, if you're not already on their mailing list, CLICK HERE to go to the AHDA site and register. The doctors, researchers, and patient advocates who participate in HOH for us take days away from their busy practices and work schedules to do this for all of use. We all need to back them up by sending emails when it's time.

So, pretty please? Go to their site and register, AND please ask everyone you know to do so too.

Namaste,
Abi

Migraine Podcast: Welcome Back, MigraineCast!

It seems that my all-time favorite podcast is back! Some time ago, Teri Robert started MigraineCast, a podcast chock full of great information and tips about Migraines and headaches.

It's been a while since the last podcast, and when I emailed Teri about it a while back, she apologized, saying that she'd been so busy with all of her work that MigraineCast had taken a back seat for a while. She promised that it would be back in 2009.

True to her word, Teri has published the first MigraineCast of 2009. Appropriately, it's titled Living Well in 2009 Despite Migraines and Headaches. To listen to this new podast, GO HERE. If you're an iTunes user, look for MigraineCast on iTunes!

Thank you, Teri!

Namaste,
Abi

Migraine Truth, a New Blogger on the Scene

I've been a bit AWOL recently. Dealing with my own family and health issues. While I wasn't around, a new Migraine blogger has appeared on the scene. Arabella started a new blog she named Migraine Truth, she says "because I'm tired of misconceptions, misunderstandings and outright lies." Wow.

Arabella is taking on some of the sites and blogs many Migraine bloggers don't or won't. Why not? I can't speak for others, but I generally don't because I don't have time to deal with retaliation. I've seen what some of these people do when someone writes something about them, and it's something they don't like.

Great job, Arabella! I hope to see you around and blogging for a very, very long time.

Namaste,
Abi