action alert: ask your Senators to support neurology incentives

The Alliance for Headache Disorders Advocacy has sent out a critical call to action, asking all of us to email our Senators. The full email follows.

Dear AHDA advocates:

The AHDA is dedicated to improving the welfare of individuals suffering from headache disorders. Our near-term goals have focused on increasing NIH funding for headache disorders to lead to improved therapies. However, the health care reform bill currently being debated in Congress has forced us to take action in a slightly different direction to protect access to quality medical care for patients with headache disorders.

The Senate Health Care Reform Bill contains a particular provision to provide bonus Medicare payments to doctors from certain primary care specialties. This is a very good idea. It is intended to incentivize and encourage doctors to enter and stay in primary care practice.

Physicians who specialize in headache medicine provide primary or principal care for patients with headache disorders and more than 90% of them are neurologists. Unfortunately, neurologists have been unaccountably left out of eligibility for these bonuses. If the Health Reform Bill passes with the incentive program as it is written, it will significantly undermine the ability to recruit and retain doctors to the field of headache medicine. Headache doctors are already very scarce, and it will become that much harder to find one.

What can we do? Fortunately, Sen Klobuchar of Minnesota, along with Sen Collins of Maine and Senator Brown of Ohio, have offered a bipartisan amendment to the Senate Health Care Reform Bill that would add neurologists to the Medicare incentive program. We, at the AHDA, have added our voice of support for this amendment to those of other national groups with interests in patients with neurological diseases, including the American Academy of Neurology, the ALS Association, the Parkinson's Action Network, the Epilepsy Foundation, the Brain Injury Association of America, the Alzheimer's Foundation of America, and the National Multiple Sclerosis Society.

We are asking you to contact your two Senators right now through our website to urge them to co-sponsor the Klobuchar amendment. Doing this is as easy as just a few mouse clicks. Please do it as soon as possible. Also, please forward this email and ask everyone that you know that cares about someone with a neurological disorder to do so now too. The Klobuchar amendment will be voted upon by the Senate any day now.


To email your Senators, click HERE.
It's easy and should take you 10 minutes or less.

Thank you very much.

Best regards,

Bob Shapiro
Bill Young
Brad Klein
Teri Robert

If you are not already receiving the AHDA alerts directly in your inbox, please click here to sign up.


Be well,
MJ

action alert: express Migraine to Congress

Betsy Blondin, editor of the excellent book Migraine Expressions, has put together a great way for us Migraineurs to increase our visibility with Congress. Betsy's efforts come at a terrific time, right on the heels of Cindy McCain "going public" with her Migraine disease.

This timely advocacy effort is called "Express Migraine to Congress", and it is very simple. Anyone can purchase a copy of Migraine Expressions and designate a specific member of the House or Senate to receive this book. Betsy is offering these books for Congress at a reduced price ($18.95) and will include a $1 donation to the Alliance for Headache Disorders Advocacy for every book purchased through this effort.

Last week, I purchased one of these books, which is now on its way to Senator Patty Murray (a member of the Health, Education, Labor and Pensions Committee). Betsy is keeping track of which members of Congress have been sent books so our efforts aren't duplicated.

I realize that in this difficult economy, you may not have room in your budget to purchase one of these books. If you do have the money, please consider sending a book to Congress. If you don't, please consider making a small donation to ADHA, or even just write a letter to your members of Congress. Betsy has kindly published a sample cover letter and given us permission to copy and paste it in our own letters. Every little bit helps, and now is a great time to join our efforts.

Let's show Congress that Cindy McCain has 36 million other Americans who are also desperately seeking a cure for Migraines!

Links:
Purchase a copy of Migraine Expressions HERE.
A list of the members of the Senate (including who has already received a book) HERE.
A list of the members of the House (including who has already received a book) HERE.
Betsy's blog post about Express Migraine to Congress HERE.
Betsy's sample cover letter to Congress HERE.


Be well,
MJ

two important blog posts

I'll admit that I've fallen out of the blogging habit a bit this year, and once I'm back from vacation at the beginning of October, I hope to start posting weekly updates again. One of the toughest parts of blogging about a chronic illness is that chronic illness often gets in the way. My Migraines in particular often limit the time I can spend on the computer. I did want to take a few minutes today and post links to two very important blog posts and ask that you check them out.

The first is an excellent interview of Cindy McCain by Teri Robert. Cindy recently came out of the Migraine closet and has become an advocate for all Migraineurs. She recently appeared on the Today show, and Teri had the chance to interview her as well.
Teri's interview: Interview with Cindy McCain, Migraine Sufferer, Advocate

The second is a petition put together by the American Pain Foundation asking the FDA to consider educating consumers about the risks of acetaminophen, rather than strict regulation. Diana Lee wrote an excellent blog post about the petition. If you agree with the APF's stance, please take a minute to sign the petition before this Sunday, September 27.
Diana's post: FDA Ban on Prescription Pain Meds: Take Action Now
APF petition: Acetaminophen: Educate, Do Not Regulate


Be well,
MJ

30 things about my invisible illness you may not know

The wonderful Teri Robert of MyMigraineConnection had recently posted this on her blog, From Teri's Keyboard, and asked me to participate.

I'll quote Teri's post here to better explain this meme:

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.

Without further ado...

1. The illness I live with is: Migraine disease (including Transformed Migraine, Chronic Migraine, Migraine Without Aura and Acephalgic Migraine), Idiopathic Intracranial Hypertension, Irritable Bowel Syndrome, along with gluten intolerance, many food sensitivities, seasonal/environmental allergies and Asthma. I also struggle with depression and anxiety. For the purposes of this meme, I will mainly focus on the head pain issues.

2. I was diagnosed with it in the year: 2003 (Migraine) & 2009 (IIH).

3. But I had symptoms since: at least my early teen years.

4. The biggest adjustment I’ve had to make is: slowing down and learning to modify my goals (both short- and long-term). I've had to learn just what is realistic with my current limitations.

5. Most people assume: that I'm healthy, especially because of my recent weight loss (75 pounds since January 2008). It's hard for them to believe that I'm sick when I look so healthy on the outside.

6. The hardest part about mornings is: getting going. Mornings are the toughest part of my day and the time I generally feel the worst. Pushing through that initial crappiness can be very hard.

7. My favorite medical TV show is: House and Royal Pains.

8. A gadget I couldn’t live without is: my laptop. My cell phone is a close second.

9. The hardest part about nights is: going to bed on time. I'm a night owl by nature, but my Migraine disease requires that I get the right amount of sleep every night. It's difficult to make myself go to bed sometimes, and occasional insomnia and/or anxiety don't help with good sleep hygiene.

10. Each day I take 19 pills & vitamins.

11. Regarding alternative treatments I: currently do massage therapy and relaxation exercises. In the past I've done acupuncture and biofeedback. This fall I plan to try mindfulness meditation, as well as get back into Nia dance and maybe try tai chi/qigong.

12. If I had to choose between an invisible illness or visible I would choose: visible. It's unspeakably hard to feel like I have to prove to others that I'm sick.

13. Regarding working and career: I was laid off from my full-time job in an architecture firm in November 2008. In March of this year, I began working part-time as a hair salon receptionist, and this week I've begun a second job as a medical receptionist, also part-time. I'm not sure if I'm healthy enough to go back to full-time work, especially in an office environment. DF and I have broad future plans to start our own business, but that's quite a ways down the road. I feel very frustrated that I've had to put many career plans on hold (like licensing exams and graduate school) because of my health.

14. People would be surprised to know: that I am in some type of pain every moment of every day. The pain never, ever goes away.

15. The hardest thing to accept about my new reality has been: limitations. I'm an overachiever by nature, someone who pushes through "anything" to accomplish my goals. I've now learned that I have to respect the limitations of my health.

16. Something I never thought I could do with my illness that I did was: blog about it, and reach out to the vibrant online chronic illness community.

17. The commercials about my illness: maddening. I tell DF that Excedrin ads are more likely to trigger a Migraine than the drug would be to stop one.

18. Something I really miss doing since I was diagnosed is: spending time out of the house with my friends.

19. It was really hard to have to give up: pushing myself "no matter what". I've had to learn to stop when my body says so.

20. A new hobby I have taken up since my diagnosis is: knitting/crochet.

21. If I could have one day of feeling normal again I would: have a picnic on a sailboat with DF, without having to worry about the sun, myriad potential triggers or my proximity to a bathroom.

22. My illness has taught me: to say no.

23. Want to know a secret? One thing people say that gets under my skin is: "I've heard that __ fixes Migraines, you should try it." Trust me, I already have. I know you may mean well, but I would rather do without the unsolicited advice.

24. But I love it when people: show compassion or honestly want to know more about my illnesses.

25. My favorite motto, scripture, quote that gets me through tough times is: "There are times in life when we can nurture our talents and watch them grow. But there are also times in life when we can do no more than protect them to get through the day-to-day, until we have the opportunity for nurturing again." (paraphrased) from the former honors director at my alma mater. He and I were discussing my worries about the effects of my health on my semester's work.

26. When someone is diagnosed I’d like to tell them: the most important thing you can do as a patient is educate yourself and ask as many questions as you need to understand.

27. Something that has surprised me about living with an illness is: how much space it takes up in my life, and how every minor decision becomes a major choice.

28. The nicest thing someone did for me when I wasn’t feeling well was: when DF took care of me after my lumbar puncture when I had a spinal headache. In addition to everything he normally does for me, he went so far as to empty a trash can I had vomited in when I couldn't walk to the toilet.

29. I’m involved with Invisible Illness Week because: the only way to increase awareness of our illnesses is to speak out.

30. The fact that you read this list makes me feel: that one day, there will be more understanding of the struggles that chronic illness patients face.


If you blog, or even if you just Facebook, I ask that you please consider posting this meme with your own answers.


Be well,
MJ

it's time to take action - TODAY!

As I posted earlier, the AHDA lobbied Washington DC last week to raise awareness of the lack of funding for Migraine and headache disorders. The time has come for us to email our representatives.

I just finished sending my email. Including writing my personal story, it took less than 10 minutes for me to advocate on behalf of the millions of us suffering with head pain.

This is what I wrote:

At only 25 years old, I am both a chronic daily headache and chronic migraine sufferer. I have head pain every moment of every day. This constant, continual pain has made it indescribably difficult to function in the world for the past several years. Because of various migraine triggers, I am unable to shop in most stores, eat at most restaurants and work at many types of jobs. In fact, having recently lost my steady job at an architecture firm due to the economy, I've been having incredible difficulty not only finding any job, but finding one I am physically capable of performing.

I am only one of 36 million migraine sufferers, but I am one of the more severe cases. I, along with millions of other Americans, desperately need an effective treatment so we can continue to contribute to our country. I have already tried almost a dozen different migraine preventives available on the market. None of these medications were specifically developed for migraine; all are "hand-me-downs" developed for other diseases. None of these drugs have worked. Without NIH-funded research, I have no hope of ever trying a treatment developed specifically for my condition. Instead, I will rely on anti-seizure, anti-depressant, blood pressure or anti-psychotic drugs, hoping one will work for me.

Now it's your turn. Go to the AHDA's website and follow the links to email your own representative of the House. It's free, it's easy and it will help the millions of us who will benefit from increased NIH funding.

Just remember, if we don't speak up for ourselves, who will?

More information about the AHDA.
More information about Headache on the Hill from Teri Robert.
Email your representative here.

Be well,
MJ

action alert: headache on the hill

It's no secret to headache and Migraine patients that we are in desperate need of more funding through the NIH for head pain research. Last year, the Alliance for Headache Disorders Advocacy (AHDA) was formed to address this lack of funding. One of the ADHA's primary advocacy efforts is Headache on the Hill (HOH), a two-day lobbying effort with the US Congress.

From the AHDA's website:

The long-term goal of the Alliance for Headache Disorders Advocacy is to provide equitable NIH funding for research on headache disorders. ... We are building on the legislative progress that began with the first HOH in September 2007 and resulted in language in the recent US Senate Appropriations Committee Report strongly urging increased NIH attention to headache disorders. If we are to realize these necessary changes in NIH funding, we must continue to make our issue heard before Congress.

So, what can you do to help? It's very simple - go to the AHDA's website and sign up for email alerts. Next week during HOH, the AHDA email Action Alerts letting us know it's time to send emails to our representatives. The AHDA will provide basic letters to send and even let us know who our individual representatives are. All we'll have to do is personalize the letters and send, which can be done in less than 10 minutes.

Last year, the AHDA had some clear victories after their lobbying efforts. Teri Robert of My Migraine Connection writes,

We know that the emails prompted by AHDA action alerts last spring had clear, positive consequences. They led to led to the adoption of the House and Senate report language that the NIH is currently responding to.

Please sign up for these email Action Alerts. It won't cost you anything other than a few minutes of your time, and can greatly help all of us in the head pain community.

More information about the AHDA.
More information about HOH from Teri Robert.
Sign up for the AHDA's email alerts.


Be well,
MJ

your help requested: Team Eye and Ear

I'll be going off the topic of Migraines today to raise awareness for another cause close to my heart.

Two of my family members are running the Boston Marathon this spring. They are fundraising for Team Eye and Ear, the charity team for Massachusetts Eye and Ear. So far, they've done an excellent job of raising money toward their goal, but I'm asking all of you dear readers to consider a donation to their team.

Why did they pick Team Eye and Ear? On their fundraising page, they explain:

Monica had sudden vision loss as a teenager caused by a degenerative cornea condition. Her doctor at the time told her she would eventually lose her sight in one eye and would need a cornea transplant. After moving to Massachusetts in 2001, Monica came to Mass. Eye and Ear to get a second opinion and transfer her care to our doctors. Her doctors and the staff at Mass. Eye and Ear gave her hope, telling her that she would not necessarily lose her vision and that there were things she could do to help prevent it. Monica explains, “Going to a world class institution and seeing the doctors who are really aware of and involved with cutting-edge research has made such a difference in the care I’ve received, and I want the opportunity to give back by raising funds to help continue that research.”

Please take a minute to check out their fundraising page and consider donating. Even $5 can make a difference!

Thanks, everyone!

More about Massachusetts Eye and Ear Infirmary.
More about the Boston Marathon.
Donate here.


Be well,
MJ

reforming healthcare to make pain less invisible

When DBF and I were laid off at the beginning of November, one of our immediate first concerns was continuing to afford treatment for my Chronic Migraines. Any regular reader of my blog knows that I haven't yet found a successful treatment regimen to manage my Migraines, though I have been working hard for several years now.

I was very fortunate at my last job to have very good health insurance coverage. My former employer did not charge employees for the basic level of insurance (which included medical, dental and vision). Our prescription plan was only two-tier. Compared to many other chronic illness patients, I was incredibly fortunate to have such great coverage. Even still, it cost me hundreds of dollars a month out-of-pocket. Now, add the cost of my COBRA coverage, and a month's worth of unemployment checks just barely covers a month's worth of treatment costs.

It's no big secret that healthcare is in dire need of reform. Many of us particularly tied to the medical industry - whether we are healthcare providers, chronic illness patients or caregivers - perked up when soon-to-be President Obama emphasized the need for healthcare reform. Cynicism aside, it's reform our country desperately needs.

Before I go on, I do want to mention the importance of universal, affordable healthcare and an effective "cure" for the shortage of primary care physicians. These topics have been written about extensively across the blogosphere, so I won't dedicate much space to them here, other than to say that they are hugely important and difficult tasks to accomplish.

But, beyond these issues is another that cannot be ignored: effective treatment for chronic pain.

According to Rest Ministries, nearly one in two people in America live with chronic illness, and 96% of illness is invisible. Many of these chronic illnesses come with pain. Pain, by its very nature, is often impossible to ignore, extremely debilitating and invisible to those not experiencing it.

This invisibility is particularly problematic when it comes to medical treatment. A familiar story: a Migraineur who finds herself in Status Migrainous, after 72 hours of pain with no relief, dutifully goes to the ER to get the Migraine broken. She knows the increased risk of Stroke after a prolonged Migraine and, per her doctor's orders, goes to the ER. Despite her doctor's treatment protocol (well documented in her records), she is treated like a drug seeker and sent home without breaking the Migraine.

Unfortunately, it has fallen to Migraine (and other chronic pain patients) to address this problem. Teri Robert, a prominent advocate for Migraineurs, has developed and freely distributed a set of ER forms for Migraine patients, in an attempt to get around the dreaded drug seeker label. Many headache specialists will do what they can to help patients get around this obstacle to the care they desperately need. Yet Migraine support groups are full of stories of poor treatment at the ER.

Let me make it clear that I'm not blaming ER doctors for this very real issue. All too often, drug seekers do go to the ER to get narcotic hits. Because pain is invisible - at least in the case of most chronic illnesses - it's hard to tell just by looking at someone if they are, in fact, experiencing a severe pain flare. The drug addicts, DEA and "War on Drugs" have combined to put chronic pain patients in a difficult position. Doctors are reluctant to prescribe pain medications to patients who legitimately need them; those medications, if prescribed, are often underprescribed; and breakthrough pain is a very real problem that chronic pain patients dread. All too often, that puts us in the hands of ER doctors.

But what if it didn't have to be that way?

I ask the Obama administration to work with the healthcare industry to find a solution to these problems, specifically:

1. Better treatments for Migraines and other chronic pain;
   
2. Appropriate prescribing of existing and new treatments;
   
3. Individual treatment protocols for patients to address breakthrough pain; and
   
4. Access to necessary emergent care for breakthrough pain (and in the case of Migraines, Status Migrainous).

Not being a medical professional, I don't have good solutions to these problems. But I firmly believe that we have an unprecedented opportunity for doctors and patients to work together with the Obama administration to address these problems. More funding of the NIH for research into chronic conditions is an important first step. Beyond that, it is up to all of us with a stake in the medical industry to work together and develop a plan of action.

The skeptical side of me sees this much reform as impossible to achieve. But the optimistic side of me is reaching out to all of you. Patients can't do this alone. Doctors can't do this alone. Nurses can't do this alone. But together, just maybe, yes we can do it.


Be well,
MJ

important: last day to comment to the FDA

Today, January 14, is the last day the Food and Drug Administration (FDA) is accepting comments on "may contain (allergen)" food labeling. As I know many of us with Migraine and other chronic illnesses are sensitive to food ingredients, I ask all of you to take a minute today and consider sending comments to the FDA.

The FDA comment form can be found here. A link from that page will bring you to the full FDA document.

My comments are as follows:

As an individual highly sensitive to a number of foods, I depend on accurate labeling of food products. Because of Chronic Migraines and Irritable Bowel Syndrome, I cannot eat gluten, dairy, monosodium glutamate (MSG), artificial sweeteners, most chemical preservatives/additives or nitrates. I have to severely limit my intake of sugar and salt. Without accurate labeling on food packaging, it is impossible to keep my diet.

The "may contain (allergen)" labeling recently introduced has been a helpful first step for my family and me to determine what I can or cannot eat. However, it is only a first step. Gluten, the protein found in wheat, rye and barley, is not currently labeled as such. Many gluten-sensitive individuals, such as myself, therefore must conduct an extensive amount of research to decide if a particular food is safe or not. This research often ends in contacting a manufacturer directly. Rather than risk consuming unsafe foods and becoming ill, I avoid them.

MSG is also not required to be labeled as such on food packaging. This makes it nearly impossible to avoid in processed foods, when it can masquerade as "autolyzed yeast extract" or even "natural flavoring". Consuming MSG will trigger an almost immediate and severe Migraine, often lasting days and completely debilitating me. Again, rather than risk consuming unsafe foods and becoming ill, I avoid them.

Lastly, when an ingredient such as broth is used in a food, the ingredients of that ingredient are not required to be labeled. Broth is particularly problematic for me - it can contain gluten, dairy, MSG or other foods I am sensitive to. If I buy a package of tuna that contains "broth", I have no way of telling if that tuna is safe for me to eat. Once again, rather than risk consuming unsafe foods and becoming ill, I avoid them.

Practically, all of this food avoidance means my family and I have to cook virtually all of our food from scratch. If food manufacturers are required to label all ingredients in their food in a clear and straightforward manner, it will open up more food options for me and massively simplify my shopping habits.

I therefore urge the FDA to:

1. Continue the "may contain" food labeling;
2. Require all ingredients, including gluten and MSG, to be labeled in a clear and straightforward manner; and
3. Require ingredients of ingredients, such as the ingredients of broth, to be labeled in a clear and straightforward manner.

I applaud the FDA's efforts to clear up food labeling for the sake of food allergic and food sensitive individuals. Now is the time to continue to clarify food labeling, to avoid severe illness caused by unintentional consumption of allergens.

Thank you for your consideration.

Thanks to ChronicBabe and Allergic Girl for publicizing this.


Be well,
MJ

engage with grace

The end-of-year holidays are traditionally a time for us to give thanks, and enjoy the company of our friends and family. This year, I'm joining health bloggers around the world to promote the One Slide Project from Engage with Grace.

If you're like me, you're not clear on the end-of-life wishes of your loved ones. Maybe you're not even sure of your own wishes. Engage with Grace is encouraging people everywhere to initiate this very important conversation at a time of year when loved ones are at the forefront of our minds. The following was written by Alexandra Drane and the Engage with Grace team. To learn more, please visit www.engagewithgrace.org.

(Thanks to Laurie at A Chronic Dose for bringing this to my attention.)

.::.

Engage with Grace: The One Slide project

We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones know exactly or have a good idea of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.

But our end of life experiences are about a lot more than statistics. They're about all of us. So the first thing we need to do is start talking.

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we're asking people to share this One Slide wherever and whenever they can ... at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Let's start a global discussion that, until now, most of us haven't had.

Here is what we are asking you: Download The One Slide and share it at any opportunity with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them.

Just One Slide, just one goal. Think of the enormous difference we can make together.

kreativ blogger award

I started Rhymes With Migraine only a few months ago, and I've been a bit lax in posting. That's the irony of living with and blogging about chronic illness - often the illness gets in the way of blogging. At least, it has for me, because I have a lot of trouble using the computer when my Migraines are bad.

I was therefore (pleasantly) surprised to learn that fellow blogger Leslie of Getting Closer to Myself awarded me with the Kreativ Blogger Award!

Leslie is one of my favorite bloggers, and has been very supportive in the short time I've known her. So Leslie, many thanks for giving me this award!

As part of the Kreativ Blogger Award, I'm to list six things that make me happy, and give this award to six other bloggers.

Six things that make me happy:

1. My very supportive family, friends and boyfriend.
2. My adorable kitty, Madcat.
3. The kindness, compassion and understanding of the entire chronic illness community.
4. Sharing my own story to connect with others.
5. Knitting, crocheting or sewing.
6. A nice warm cup of tea.

Six bloggers I want to give the Kreativ Blogger Award to (in alphabetical order):

1. Diana, of Somebody Heal Me
2. Ellen, of WEGO Health
3. Janet, of The Migraine Girl
4. Megan, of Free My Brain From Migraine Pain
5. Suzie, of Sparkling With Crystals
   
6. Teri, of MyMigraineConnection (and others)

Thanks again to Leslie for honoring me with this award. I encourage all of my readers to check out my choices, as well as the other wonderful blogs in my blog roll.


Be well,
MJ

national invisible illness awareness week

Those of us with Migraines certainly understand the frustrations of living with an invisible chronic illness, one that brings us incredibly debilitating pain and other symptoms. Many of these frustrations we share with other members of the invisible illness community, specifically that Migraines are invisible, and those around us can't tell we're sick just by looking at us. Hence the word, invisible.

You may have noticed in reading my blog that I capitalize the words Migraine and Migraineur. I adopted this for many of the same reasons as my fellow Migraineur bloggers: advocacy and awareness of Migraine as a disease, and more than just a bad headache. Teri Robert of MyMigraineConnection explains her reasoning for the capital "M" in her excellent blog post, Migraine With a Capital "M".

Ellen Schnakenberg over at WEGO Health has recently run into trouble with the WEGO editors. Per AP style guidelines, diseases are not capitalized unless they are named after a person (Parkinsons, for example). Because WEGO follows AP style, they will not allow Ellen to capitalize Migraine in the WEGO newsletters. After some pressure, they have allowed her to capitalize Migraine in her own blog posts and articles. Teri Robert fought a similar battle with About.com before she moved over to MMC.

This may not seem like a big deal. Follow the style guidelines and stop making a fuss about it already! But for those of us living with Migraine, recognition of our disease as what it is - neurological in basis with a genetic component, and incurable - is crucial. Public perception of Migraine is that it's just "a bad headache". How many of us have heard and been hurt by those insensitive comments? Can't you just take some Advil? You always have a headache. I used to suffer from headaches too, until I found ___ cure. Sound familiar?

Clearly I do not follow AP guidelines on my blog when it comes to this issue. And from now on, instead of capitalizing just Migraine, I will be capitalizing the names of all diseases - Arthritis, Multiple Sclerosis, Epilepsy, Lupus, all of them. Those of us with invisible illnesses not named after a person shouldn't have to be reduced to a lowercase letter, especially when these illnesses have such a large impact on our lives.

In the spirit of National Invisible Illness Awareness Week (September 8-14), I ask all of my readers to consider doing just one thing to raise awareness. That could be as simple as talking to your significant other about the details of your illness that you normally try to hide. It could be writing a blog post or a letter to a friend. It could be capitalizing the name of your illness, or all illnesses. It could be any of these things or others, whatever may be your personal comfort level.

For further reading about II Week, I encourage you to visit the II website and see what other bloggers are doing. If you have any ideas about raising awareness, I would love to hear them in the comments.


Find more videos like this on Illness-Disability-Healthcare-Caregiver Ministry Network


Be well,
MJ

guest post

If you haven't seen it already, I was featured as one of the guest bloggers on the Invisible Illness Week Blog: should I claim the label to my illness as part of my identity?

Be sure to check out the other guest bloggers featured there.

Be well,
MJ

a bullet-point update

I'm a bit behind on posting, so let's see if I can summarize in a concise way.

• The July Pain Blog Carnival, over at How To Cope With Pain. I didn't submit an entry this month, but it's still got some great reads.

• On a related note, How To Cope With Pain is accepting entries for the August Pain Blog Carnival. No theme, just your favorite post. The deadline is August 22, so submit your entry here.
  

• The August Headache and Migraine Blog Carnival at Diana Lee's Somebody Heal Me. This month's theme is "when people don't 'get' Migraine disease". Some great reads here as well (I'm still working through it). Once again, yours truly missed the submission deadline, so you'll have to wait for next month to see me included.

• Diana Lee is now accepting entries for September's Headache and Migraine Blog Carnival. September's theme is "your best tips on improving communication between patients and their doctors". Entries are due by September 5, and you can submit them here.

• Marijke Durning over at Help My Hurt has a new feature, the Topic of the Month. This month's is "how can you find help for your pain?" Check it out and comment with your ideas here.

• Another plug for Help My Hurt. Marijke posted about the closing of the midwifery program at Miami Dade College in Florida. Read her full post here, including what you can do to help protect a woman's right to choose her method of delivery.

• If you're a blogger on chronic illness, be sure to check out Invisible Illness Blog's call for submissions. National Invisible Illness week is coming up next month, and it's up to us to publicize it! Any CI sufferer, or their loved ones, will find great information at their website, here.
  

Okay, I think that's it for now. I hope to update again soon on a more personal level.

Be well,
MJ

the irony of National Headache Awareness Week

It's ironic that National Headache Awareness Week would be a bad head week for me, but so it goes. Had I been feeling better, I could have publicized it at the beginning of the week, and perhaps even watched the new NHF youtube channel videos.

Instead, I've spent the week absolutely miserable, with severe head pain and the whole list of my typical migraine symptoms: vertigo, nausea, stomach pain, diarrhea, phonophobia, photophobia, cutaneous allodynia, sensitivity to smell, depression, difficulty concentrating.

Part of the problem is that I finished a 10-day course of prednisone, which Dr E had prescribed for me in hopes of breaking my months-long migraine. I took a 5-day "burst" of the steroid, followed by a 5-day taper, and I had thought my body was dealing with the drug pretty well. I had some unpleasant side effects that were tolerable. But this week, after coming off of it, was terrible. I had horrid body aches and no energy, making me even more sympathetic to my fibro friends out there.

Oh yeah, and the prednisone didn't break my migraine. I did get five days of low pain, but as soon as I started tapering, my pain climbed right back to where it always is.

Add to that, I'm getting more side effects from the Topamax again, which I don't understand. I've been taking a 50 mg dose - a low dose, even for a migraineur - since March. Suddenly, I'm having stomach pains, worse nausea, tremors and dizziness again. And a new one: muscle spasms. My body is acting like I just started taking the Topa, even though I've been on it for several months now.

Luckily, I will be seeing Dr E on Monday. I'm scheduled for my first Botox treatment. I didn't get a phone call from his office today, so presumably my insurance has approved the treatment. (I will be calling first thing on Monday to double-check.) When I see him, I will let him know the trouble I've been having this week, and ask him about the reappearance of the Topa side effects.

So, in honor of NHAW, I've been more aware than ever of the impact migraine disease has on my life. All week I struggled to get through work, and couldn't in fact work a full 8-hour day any day this week. Today I called out; even though my head pain wasn't as bad as it had been earlier in the week, my stomach was in bad shape and I had severe menstrual cramps to boot. And I was just plain tired.

I plan to spend the weekend recuperating - just like I do every weekend. But after such a bad head week, it's even more important to refocus on my body's needs and take care of myself. Everything else will have to wait. Including those youtube videos.

Be well,
MJ

migraineurs and CFLs: a crucial public health issue

I have posted quite a bit around the web on this subject, and even about my personal struggles with fluorescent lighting, but until today, I have not mentioned an important petition regarding migraineurs and compact fluorescent lightbulbs (commonly called CFLs) - at least, until now.

First, some background: in December 2007, the US Congress passed the Energy Independence & Security Act of 2007, a comprehensive piece of legislation designed to decrease our country's gobbling-up of energy. Buried in this was a mandate to phase out all incandescent lighting by 2012.

The idea behind this particular piece of the law is that incandescent lighting is incredibly inefficient, and more efficient forms of lighting are already available on the market. By 2012, when US consumers are no longer able to buy regular incandescent bulbs, they will have to buy more efficient forms of lighting, thus reducing our energy consumption even if no one's energy consumption habits change. In other words, if you're one of those people who leaves lights on 15 hours out of the day, by using CFLs instead of incandescents, you'll cut your energy consumption (and electric bill) rather significantly without much effort on your part.

Sounds good, right? It all is - in theory.

Here's the problem. For many migraineurs, myself included, CFLs trigger debilitating migraine attacks. CFLs also have been shown anecdotally to cause health issues for other people, including those with epilepsy and lupus. So while none of us will argue with the importance of being "green", CFLs are not a viable option for us.

Unfortunately, with currently available technology, CFLs are the easiest replacement to make. They are made to fit in traditional lamp sockets and, while more expensive than incandescents, are still in a close enough price range that most consumers will choose these over other options.

Like many other migraineurs, this legislation truly worries me. If 2012 rolls around and incandescent bulbs become unavailable, I will not have many viable options. I can live my life in the dark, I can live by candlelight, or I can invest in significantly more expensive technologies, like light-emitting diodes (LEDs), that are also not ideal for typical household use.

Here's the thing: with the way the law is currently written, none of this is likely to change in the next four years. And that's why the Migraine Disease & Headache Bloggers Association has stepped up and written a petition to Congress.

Instead of outlawing incandescent lighting completely, we are asking Congress to amend their legislation, focusing on energy efficiency standards that all lighting would be required to meet. These standards would allow lighting manufacturers to continue to make incandescent lighting, but require them to find ways to make them more efficient. This would also allow CFLs to stay on the market, as well as encourage other new technologies to develop. By focusing on energy standards rather than specific technologies, the amended law would no longer be a knee-jerk reaction to the green craze. Instead, it would be a future-thinking law that will allow flexibility of technology, while still meeting the intent of the original law.

Migraineurs are not opposed to the use of CFLs - that is, unless we've determined this type of lighting is a trigger and we're being forced to use it in our own home. Many of us are trying to find ways to shrink our carbon footprints. We should not be forced to suffer because of a well-intentioned piece of legislation passed by Congress. This is a national health issue, affecting many of the 36 million American migraineurs. Surely we should have some choice about our home lighting? Surely we should not be completely eliminated from public life because of a lack of knowledge about the health issues associated with CFLs?

I ask all of you to take a minute and sign our petition, which you can find here: protect migraineurs from CFLs. Please pass this along to all those in your life. It's likely some of them are migraineurs, and they may not even know they're affected by CFLs.

For more information about energy efficiency in your own home, please see the US Department of Energy's great website, Energy Efficiency and Renewable Energy. In particular, Types of Lighting is an excellent basic overview.

For further reading, please see these posts by my fellow migraine bloggers:

• Teri Robert, Lighting, CFLs and Migraine Triggers
  
• Megan Oltman, Protect Migraineurs from Compact Fluorescents
• Megan Oltman, Alternatives to Compact Fluorescents - for Migraineurs and the Rest of You!
• Diana Lee, Please Sign CFL Petition to Protect Migraineurs
  
• Help My Hurt, Saving Energy May Be Causing Some Migraines
• RainGem, Fluorescent Lights as Migraine Triggers - the Petition
• My Life with Migraine, Protect Migraineurs from Compact Fluorescent Light Bulbs
• Pink Pearl Girl, Migraine and the Energy Independence & Security Act of 2007
• The Migraine Girl, Urgent: a Petition
  

Thanks for reading.

-MJ

communication

I'm not one to normally post much migraine-related news, but I couldn't pass this one up.

Dr Alexander Mauskop over at Headache NewsBlog recently cited a study done by Dr Richard Lipton and his colleagues, showing that doctors often don't hear out their migraine patients. This may come as no surprise to many of us that there is this breakdown in communication between doctors and patients.

The problem seems to be (from my reading of his short blurb) that many doctors ask close-ended questions of the "yes or no" variety. More useful would be "open-ended" questions that would require a longer response from the patient, a chance to explain.

Unfortunately, the problem doesn't end there. The information the doctors did obtain from the patients was often incorrect, and tended to make the patient's disability to be less than it actually was. Meaning preventive medication was often not discussed or prescribed when it may have been appropriate.

So what is a migraine patient to do? Many of us know the frustration of having a doctor not listen to us. In fact, that is much of the reason I fired neuro #3.

First, I'll link you to a couple of great articles over at My Migraine Connection, courtesy of Teri Robert:

1. Migraineur's Guide to a Successful Doctor's Appointment
2. Coping With Busy Doctors
3. Is Your Doctor Right For You?

Next, I'll share a few techniques I've used, that I'm still in the process of developing. Many of these ideas are modified from suggestions I've gotten from my buddies over at the MMC forums, so I certainly can't take credit for their ideas. But I would like to share them with all of you in the interest of better health care for all of us.

What I bring with me to my appointment:

1. Bulleted list of my relevant health history, including approximate dates of diagnosis.
2. List of my typical migraine symptoms.
3. List of my migraine triggers: suspected, confirmed and stackable.
4. List of medications I've tried: including dates, dosage, results and side effects.
5. List of therapies I've tried: including dates and results.
6. List of lifestyle changes I've made: including dates and results.
7. List of all current medications and supplements I'm taking: both prescription and OTC, including dosages.
8. For my current preventives, a list of the side effects.
9. List of concerns and questions, typed, with space left between the questions so I can write my doctor's answers.
10. Headache diary. I keep a daily diary and summarize it onto a monthly sheet. I bring both to my appointment and give a copy of the monthly sheet to my doctor. On the summary sheet, I note days I had a migraine, when it started, migraine symptoms, pain and disability levels on a 0-10 scale, any change in medication, abortives I've taken and medication side effects. I also track my menstrual cycle on here, even though I don't seem to have menstrual migraines. I've developed some shorthand abbreviations for this information, so I note that on the bottom of each sheet.
    

I take two copies of all this paperwork with me to the appointment, one for myself and one for my doctor. I write my full name, birth date and the date updated on each page. Taking two copies of the question sheet is especially important; that way, I don't chicken out from asking any of my questions and the doctor can follow along with me. Then all of these pages get added to my medical record in the office, and I have a copy for my own records at home.

Another suggestion that's been made is to take a tape recorder and record the appointment. Inevitably, no matter how well-prepared you are or how well you listen and take notes, you're bound to miss something. By recording the appointment, you can go back later and listen through the appointment. I plan to try this at my appointment with my new specialist coming up soon.

Communication is a big challenge in any relationship. In a doctor-patient relationship, it is one of the biggest challenges and most important skills. Because our migraines can't really be "seen" or "measured" for the most part, it is up to us, the patients, to communicate as best as we can. Going into an appointment well-prepared is a great first step.

Obviously communication is a two-way street. Sometimes a patient just can't overcome a doctor's inability or unwillingness to listen, and that's when it is time to move on.

Do you have any other suggestions? Please comment - I would love to hear them and share them with the rest of the migraine community.

EDIT: Dr Lipton's original study can be found on PubMed. I haven't had a chance to take a look at it yet, but I'll post the links here for you folks. In Office Discussions of Migraine: Results from the American Migraine Communication Study. Thanks to Dr Mauskop for providing me with the link.

-MJ

coming out of the (migraine) closet: a borrowed subject

Fellow migraineur and blogger, Megan Oltman, wrote an excellent post yesterday (as always) about coming out of the migraine closet. She makes the analogy of living publicly with this disease, of coming out with it like coming out with sexual orientation, and the need for education as a path to acceptance. She's right - the only way we migraineurs will ever get the compassion we deserve is through understanding, which will only come after education. And it's up to us.

Megan is doing an outstanding job, I think, of living out in the open with migraine disease. She doesn't hide her migraines, doesn't apologize for them, and does her best to ask for reasonable accommodations as she needs them. She educates those around her without preaching. I'm sure like the rest of us she still encounters those who just don't "get it", but that's to be expected. I give her a lot of credit for living her disease so publicly, because I'm not there yet.

I'm still in the migraine closet, so to speak.

For the most part, I don't discuss my disease. My boss and team at work know that I get migraines, but that's about the extent of it. I did print out some information about migraines from MMC and AHDA - including "What is a Migraine?", Understanding Migraineurs letter and the AHDA flier - to pin up outside my cubicle. Within the same week, I faced some incredibly insensitive comments from one of my coworkers, whom I promptly named "Mr Insensitive".

In college, I lost a lot of friends because of my migraines. At that time, I didn't even understand what I was going through, so I couldn't educate them. I thought I was just having sinus headaches. Along with the migraines came a bout with depression, and the friends I had were unwilling/unable to be a good support system at the time. Fair weather friends indeed.

I don't mean to make this into a sob story, but being burned in the past has made it difficult for me to be upfront with others in my life about the severity of my migraines, and I know I'm not alone in this. It's a subject we discuss every day on the MMC boards. Who do we tell? How do we tell them? How do we deal with those in our lives who don't get it? There is no one size fits all answer, that's for sure.

I've been working to educate those in my life who are close to me. DBF is reading Teri Robert's excellent book, Living Well With Migraine Disease and Headaches. I feed tidbits of information and articles to my mom. I sent the link to this blog to my sister. (Both my mom and sister, like most of the women on my mother's side of the family, are migraineurs.) Cliche though it may be, knowledge is indeed power.

So I may not be living openly and comfortably with my disease, but I'm getting there. One foot is poking out of the closet, at least.

-MJ

Thanks to Megs for a great topic!