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

book review: The Migraine Brain

I recently read The Migraine Brain: Your Breakthrough Guide to Fewer Headaches, Better Health, by Carolyn Bernstein, MD, and Elaine McArdle. I published a review of it over on MyMigraineConnection, which you can find here.

If anyone else has read this book, I'd love to hear your comments either here or at the review itself.

Be well,
MJ

virtual book tour: Women, Work, and Autoimmune Disease

Today kicks off the virtual book tour for a must-read book, written by Rosalind Joffe and Joan Friedlander: Women, Work, and Autoimmune Disease: Keep Working, Girlfriend!

Rosalind writes blogs at Working With Chronic Illness and Keep Working, Girlfriend, along with her web-based business, CI Coach. All are wonderful resources for anyone living and working with chronic illness.

For today's guest post, I asked Rosalind to talk about the five best and five worst things a woman with chronic illness can do for her career. All of these ideas, and much more, can be found in her book, so be sure to check it out. Tomorrow, stop by fellow Migraine blogger Diana Lee's Somebody Heal Me for the next stop on the virtual book tour.

.::.

My Top Five suggestions for managing your chronic illness in the workplace

1. Stay on top of the situation. When chronic illness (CI) symptoms are causing you to screw up in your job because of a CI, have a “sit down” with yourself and figure out what you want to have happen and what you can do to make that happen.

2. Get help when you need it. When you can’t accomplish a task on time or on your own, shut down the self critic and replace it with the following questions: what do I need, who can help me best, and what should I say when I ask?

3. Be mindful of how you discuss your CI. When you have to talk about your CI with colleagues, supervisors or people who work for you, keep your emotions to yourself (even if someone asks how you’re doing).

4. Be as sure as you can be that you can do the job. When you take a new job, keep your CI symptoms in mind and be realistic about whether this is something you can do on your good days and bad. You’re not in the astrology business so try to predict the future. But you can base your best guess on what you know rather than fears or wishful thinking.

5. Develop your talents. The best insurance you can have (and we with CI know that nothing is for sure) is to be the best you can be at what you do. When your talents add value, people will be more likely to support you when the CI is “acting up”.

My Top Five worst things you can do to manage your chronic illness in the workplace

1. Incessantly referring to chronic illness and talking endlessly and mindlessly about living with a CI, will cause people to tune you out. When you talk about your CI to anyone and everyone who will listen JUST because it’s on your mind, people stop listening. Even worse, they can easily start to doubt that you can really be as sick as you think.

2. Take a two week vacation one week after you return from a short disability leave. You could create bad feelings, Especially if everyone around you hustled to get your work done.

3. Wait until you’ve screwed up royally over and over again before you tell your supervisor that you can’t do the job in the time frame it’s expected because the CI is getting in the way.

4. Never volunteer for the extra assignment, offer to help others when they need it or do anything that shows that you’re a team player.

5. Keep to yourself and fail to develop relationships with co-workers because you feel ashamed, guilty or worry that someone will discover you live with a CI.

Rosalind, president of cicoach.com (http://cicoach.com), is the coauthor of Women, Work and Autoimmune Disease: Keep Working, Girlfriend! and her blog is http://WorkingWithChronicIllness.com Feel free to reproduce or share the Top 5 list as long as you give her attribution.

call for submissions - tell your own story

Fellow chronic illness blogger Leslie, over at Getting Closer to Myself, has put out a call for submissions.

*************************
PLEASE FORWARD
*************************

CALL FOR SUBMISSIONS:

Are you:
- A woman in your twenties or thirties who has a chronic illness, or
- A woman who is older, but was diagnosed with a chronic illness in your twenties or thirties?
- Are you either one of those and you blog about your illness?

If so, I am working on a project collecting essays from women about their experience with chronic illness. There are many books available that chronicle the story of one person. And they are great, but… I’m interested in providing women like me with a variety of stories that they can relate to. Although the diseases and symptoms may be different, the overall experience of chronic illness is very similar. I am also interested in having people tell their own stories.

These stories should be in your own words! Tell it well and tell it from the heart!!!


I know I would love to see a book like this come to fruition, so please consider sending her your story. Full details and submission requirements can be found at the original post: Getting Closer to Myself: Call For Submissions!!!

Be well,
MJ

betrayed by my own head

A few months ago, I read a book by Michael Stein, MD, called The Lonely Patient: How We Experience Illness. While much of this book is framed in the author's experience with terminal illness (not his own, but that in his family), he does speak to chronic pain throughout. He divides the book into four parts, corresponding to the four reactions he sees to chronic illness: betrayal, terror, loss and loneliness. Betrayal is certainly one of the emotional reactions I seem to revisit frequently on my journey toward acceptance of this disease.

This weekend - Saturday night, especially - was another visit of betrayal.

Over the past two years, my chronic daily headache has gradually become daily migraines, and now a continual migraine since about the end of November. On one hand, this has taken away the unexpected and often frustrating aspect of episodic migraine, which is you just never know when it might strike. I always know when it will strike, which is always. I wake up with the pain, I eat, breathe, work, think, walk, do and sleep with the pain. It's there, a constant resident in my brain, whether I like it or not. I'm doing what I can to dislodge it, but in the meantime, I'm stuck.

My brain decided to play a new trick on me Saturday night.

DBF and I were curled up on the couch after dinner, watching tv, when I had this weird wave of dizziness pass over me, followed by pins and needles all over and a sort of hot flash. Then the tingling settled in on just the left side of my body (arm and leg). After a few minutes, when it didn't pass, I started to get rather scared. Something isn't right, my instincts are telling me.

You see, a migraine that lasts longer than 72 hours, without at least a 4-hour break in pain while awake is status migrainous, considered a medical emergency because it puts the migraineur at increased risk of migrainous stroke. Having had this particular migraine since last November, I pay extra attention to new symptoms. And like any educated migraineur, I know the symptoms of a stroke.

So, I told DBF what was going on, that I was scared. We decided to call 911. He told the dispatcher what was going on, described my symptoms and told them how long my migraine had been going on. The paramedics got here relatively quickly - though it seemed like an eternity, of course - and checked my vitals while they asked me some questions about my symptoms. They left the decision up to me whether they would bring me into the hospital or not, but they saw nothing life-threatening that concerned them. They did remind me that they are only firemen, of course, not doctors. I decided not to go with them.

I did call the doctor on-call at my fired specialist's office to see if he thought I should seek emergency attention. He spoke with me for probably ten minutes, asked some questions about my symptoms, about my IV treatment on Friday, including which drugs they had given me, when, and if I had had them before; as well as if I had had these symptoms before. He also checked to see if I had had an MRI before (I had one a month ago that came back normal). He believes these new symptoms to be another manifestation of this ongoing migraine and described it as "complicated migraine", which is a descriptive term (not a standard diagnosis). He did not see any need for me to seek immediate care, but did encourage me to call my doctor today.

As unpredictable as this illness often is, we still expect it to follow a certain pattern. My pain is usually here, I usually have these symptoms, I usually get a migraine after encountering these triggers. Whenever our disease breaks the pattern, it's frightening for one thing, but we are also left with a sense of betrayal. Migraine beast, it's hard enough to cope with you on a normal day, but why do you have to change your pattern?

The tingling has not gone away since Saturday night, but I also have not developed any new symptoms. The doc on call told me some specific things to watch for that would indicate a need for immediate medical attention. I called into the nurse's line this morning and left a message about these new symptoms; I got a call back asking for some more information, and letting me know the message would be passed along to my (fired) specialist tomorrow since she was already gone for the day. (Another sign that I know I made the right choice in firing this doctor - unfortunately she's all I've got until May 21 when I see the new guy.)

The good news is, I know I can rely on DBF in case of emergency. He took me seriously and didn't question the need to call 911. He kept me calm while we were waiting for the medics and when it was all said and done, gave me a big hug when I started to cry. And cheered me up by making me laugh. Because this whole thing freaked me out.

So, a reminder to all of you fellow migraineurs out there: if any new, unexpected or worrisome symptoms crop up - even if they are just new symptoms - please check with your doctor at the very least. When we are dealing with brain issues, it is much better to just have things checked out.

-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!