tag:blogger.com,1999:blog-83219923379755556632025-07-12T12:06:50.786-07:00the life and musings of a woman with Chronic Migraine, a genetic neurological diseaseMJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.comBlogger62125tag:blogger.com,1999:blog-8321992337975555663.post-28140882355457388482009-12-10T12:19:00.000-08:002009-12-10T12:19:11.384-08:00

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

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com2tag:blogger.com,1999:blog-8321992337975555663.post-25700261020763072722009-12-08T17:25:00.000-08:002009-12-08T17:25:40.126-08:00

* "She tosses on the waves but does not sink". I remember when I spent a semester living in Paris during college, I frequently took comfort in this phrase, the motto of the city of Paris. I had a lot of trouble there with culture shock and the language barrier, even though I spoke quite a bit of French when I went. Now that I'm struggling, again, in troubled waters - this time because of

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com5tag:blogger.com,1999:blog-8321992337975555663.post-64095272956642189792009-11-01T16:43:00.000-08:002009-11-01T16:43:50.771-08:00

If my Migraine disease has taught me anything - and continues to teach me anything - it's the value of slowing down. We talk about slowing down all the time when we discuss chronic illness. Being chronically ill requires us to reserve our energy for those things that really matter, to evaluate what we can and cannot do based on how our bodies feel. While initially upon being diagnosed we can

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com4tag:blogger.com,1999:blog-8321992337975555663.post-87113635215033043502009-10-24T19:16:00.000-07:002009-10-24T19:16:40.220-07:00

It's no secret to me - or anyone who's been following my blog - that I've been having a really tough time lately. My mother keeps telling me, don't despair. Chronic illness is certainly difficult enough to deal with all on its own, but add in the unemployment and sometimes (often) it is just too much to cope with. My Depression and Anxiety issues have gone from lurking on the horizon to

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com5tag:blogger.com,1999:blog-8321992337975555663.post-65256446263423692712009-10-21T17:37:00.000-07:002009-10-21T17:39:15.816-07:00

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

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com0tag:blogger.com,1999:blog-8321992337975555663.post-29237392170189264002009-10-18T11:44:00.000-07:002009-10-18T11:44:04.296-07:00

I've been here before. A brief trial of a medication, followed by confusing side effects and my doctor's orders to "discontinue the medication". As I posted last week, I started a low dose of citalopram (generic Celexa, an SSRI) mainly to help with my Anxiety, and hopefully my Depression and Migraines as well. The first two days, the side effects were tolerable, but by the third dose, my body

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com5tag:blogger.com,1999:blog-8321992337975555663.post-77694615074830178002009-10-09T22:31:00.000-07:002009-10-09T23:19:44.223-07:00

DF and I recently went on vacation to Charleston SC for a week, which marked the official start of our wedding planning. We had a great trip. The first half we spent with my mom and sister; after they left, we had three days to ourselves to play tourist. I actually felt fairly good during vacation. I still had the daily head pain from my Migraines and IIH, but I paced myself and practiced good

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com4tag:blogger.com,1999:blog-8321992337975555663.post-17538662692352315052009-09-22T12:09:00.001-07:002009-09-22T12:28:40.021-07:00

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

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com4tag:blogger.com,1999:blog-8321992337975555663.post-29719712811100691422009-09-12T20:17:00.000-07:002009-09-13T11:50:48.017-07:00

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,

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com2tag:blogger.com,1999:blog-8321992337975555663.post-29820881222774591222009-08-16T15:43:00.000-07:002009-08-16T16:17:46.829-07:00

Eyes open too wideBright burning sun, eyes closed, seeing redColors bleached out, mutedSandy eyes, dry, bloodshotPupils confusedPain lurking behind eyelashesFacial tensionSkin too tight, fragile skullCrows clawing eyesMigraineFrying my brain

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com3tag:blogger.com,1999:blog-8321992337975555663.post-21993303050522424062009-08-10T17:02:00.000-07:002009-08-10T17:44:20.073-07:00

Well, hello there, everyone. I'm hoping to get back into more regular updates, and in the meantime, I hope to catch you up a bit on what's been happening in my corner of the world.When I saw Dr E in February, he prescribed a low dose of Celexa (citalopram) to help with the anxiety and depression I was dealing with because of life stressors (namely, unemployment) and my health. Celexa is also used

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com2tag:blogger.com,1999:blog-8321992337975555663.post-43370340270271540192009-04-04T11:22:00.000-07:002009-04-04T22:02:01.599-07:00

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

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com3tag:blogger.com,1999:blog-8321992337975555663.post-89239414951150920372009-03-14T23:37:00.000-07:002009-03-14T23:58:25.774-07:00

I had an interesting conversation with a friend, B, tonight. Without sharing too many of her personal details, she's in the middle of seeking a diagnosis for abdominal pain, originally related to ovarian cysts and now possibly an infection.I've been friends with B since college, though we haven't necessarily been close. Last year, during a trip back east, I opened up to her some about my daily

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com6tag:blogger.com,1999:blog-8321992337975555663.post-51286542232488025632009-03-03T11:33:00.000-08:002009-03-03T11:41:46.535-08:00

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

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com1tag:blogger.com,1999:blog-8321992337975555663.post-71598456248433397102009-02-16T15:49:00.000-08:002009-02-16T16:16:26.475-08:00

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

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com5tag:blogger.com,1999:blog-8321992337975555663.post-58503687375385276702009-02-10T11:11:00.000-08:002009-02-10T11:39:53.685-08:00

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

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com0tag:blogger.com,1999:blog-8321992337975555663.post-89263044159417640462009-02-08T13:20:00.002-08:002009-02-08T13:41:02.139-08:00

I went to see Dr E on Thursday afternoon for a follow-up appointment, and even though there was some confusion (they had canceled my appointment but forgot to call me), Dr E and his PA worked me into the schedule since I was there.The appointment went very well. We went over the success I've been having with Dr P's regimen. My pain levels are significantly lower than they were a few months ago,

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com12tag:blogger.com,1999:blog-8321992337975555663.post-2878930344346289262009-01-23T16:50:00.000-08:002009-01-25T23:51:54.921-08:00

Last Sunday, I went for my weekly massage with my wonderful therapist, N. After some trial and error before the holidays, I finally settled on N as a good fit for massage. Between the holidays, moving and getting sick, it had been close to a month since my last massage, so I was happy to get back.During last week's massage, in addition to the complete relaxation I'm normally able to achieve, I

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com11tag:blogger.com,1999:blog-8321992337975555663.post-16745402142220704712009-01-20T10:36:00.000-08:002009-01-20T10:40:14.728-08:00

This week's Grand Rounds has been posted at MedPage Today. I'm proud to announce that my post, Reforming Healthcare to Make Pain Less Invisible, has been included. Be sure to check it out - I'm still working my way through it, but it looks like a great edition.And congratulations to our new president, Barack Obama.Be well,MJ

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com1tag:blogger.com,1999:blog-8321992337975555663.post-48121962743012336292009-01-18T16:49:00.000-08:002009-01-18T17:39:31.719-08:00

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

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com6tag:blogger.com,1999:blog-8321992337975555663.post-71956949071598020882009-01-14T11:51:00.001-08:002009-01-23T23:43:49.134-08:00

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

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com2tag:blogger.com,1999:blog-8321992337975555663.post-30564658588365853482009-01-08T18:52:00.000-08:002009-01-23T23:59:09.898-08:00

Well, the holidays seem to have gotten the better of me, as I haven't posted since Thanksgiving. My humble apologies to all of my dear readers out there.To be honest, I'm not even sure what happened in the past month. The holidays were coming up, sure, but it's not like I was doing last-minute Christmas shopping... or any shopping. DBF and I are still among the ranks of the unemployed, so our

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com6tag:blogger.com,1999:blog-8321992337975555663.post-73013351376303549392008-11-26T11:53:00.001-08:002009-01-23T23:58:40.562-08:00

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

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com8tag:blogger.com,1999:blog-8321992337975555663.post-69444051700512012442008-11-23T13:23:00.000-08:002008-11-23T13:44:31.846-08:00

First, thanks to all of you who have expressed your thoughts, prayers and support for myself and DBF. We are coping pretty well. Financially, we're ok - we had set aside some money for a downpayment on a house, so we have enough savings to keep us going for a while. With the help of the career outplacement services paid for by our former employer, I'm confident that we will not only find jobs,

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com6tag:blogger.com,1999:blog-8321992337975555663.post-49132535731301189552008-11-08T16:59:00.000-08:002008-11-08T17:12:43.552-08:00

Today's post is a bit more personal than most, if you'll bear with me.This past Thursday, November 6, turned out to be a much more unusual day than I expected. It started out like any other, DBF and I walking to work together. About two hours after we got in, DBF called me to tell me had been laid off. And within the hour, I met with my team lead and an HR rep to find out I also would be let go.

MJhttp://www.blogger.com/profile/03540633438951294127noreply@blogger.com11