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

fluctuat nec mergitur*

* "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 chronic illness - I find myself coming back to this phrase.

November proved to be one of the hardest months of the year. The first three weeks I felt tossed around by the weather coming through, wave after wave of storms. We set all sorts of records for rainfall, and not surprisingly, the November storms brought huge wind and dramatic pressure changes. A perfect storm for Migraine misery. I spent three weeks doing nothing but my part-time job (a paltry 18 hours a week) and laying on the couch, and remembered how awful it is to be so sick.

The third week of storms, I decided to increase the dosage of acetazolamide, as Dr E had advised I could do. I lasted four days at that dose. It's hard to tell, but I want to say it made my head pain worse. I say it's hard to tell because I was already feeling so bad that it was difficult to tell what pain came from which trigger.

And when things began to look up, when the storms calmed and I stopped the higher dose of acetazolamide, when my mom came into town for Thanksgiving, I was tossed by yet another wave. My boss called me the Sunday night before Thanksgiving to let me know he was laying me off, because he just couldn't afford to keep paying me anymore. And to add insult to injury, the unemployment office is "reviewing my claim" and hasn't paid me in over a month.

The past few years have been an exercise in treading water and just trying not to drown in the stormy waves of chronic illness, constant pain, debilitating Migraine symptoms, adverse effects, depression, anxiety, unemployment, financial strain, frustration, stress. While my pain levels have undoubtedly improved over the past year, my emotional state has gotten worse.

I'm ready for this bad cycle to end. I'm ready for some good news. I'm ready for some smooth sailing. But I clearly don't get a choice in the matter. Chronic illness (and unemployment) is all too good at reminding us how little in life we can actually control; I'm left trying to weather this storm, trusting that I won't sink.


Be well,
MJ

Image courtesy of Wikipedia.

slowing down

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 fool ourselves into thinking we can still operate our lives at "normal" speed (whatever that means), eventually our bodies demand us to make some hard decisions.

On an even more basic level than that, time slows down with pain. My Migraines and IIH together mean I'm in constant pain. Coping with that pain can slow down time - can you remember a time when a painful injury made it feel like an eternity until that pain was relieved? Chronic pain has a funny way of altering one's perception of time.

Slowing down also takes shape in the way we carefully consider choices where others might make snap decisions. Should I go out tonight, or stay in? If I get off the couch, will my symptoms feel better or worse? What is the best thing for me to eat tonight, based on how I'm feeling? If I take a shower in the morning, will that make it more difficult to get through a full day of work? Should I shower at night instead? How can I dress myself to go out so I'm comfortable but still feel stylish? Stopping to consider every little incidental action slows us down.

Since yesterday was Saturday, that meant a weekly trip to one of our local farmers' markets. DF and I buy the vast majority of our food directly from farmers. (There's quite a large backstory here, which I plan to post about in the future. The short version of our reasoning is that it's the cheapest way to get the quality of food I need to eat to help manage my multiple illnesses.) The seasonal market we used to go to ended at the beginning of October, so we're now going to a year-round one; since DF was working on Saturdays I got to go myself. Which was a nice change from our usual habits.

Yesterday I wasn't feeling very well because of some stormy weather that had passed through the night before. My body soon told me to slow down, a not-so-gentle reminder that even when I think I'm taking it slow, my body has ideas of its own. So I found myself in one of the farmers' stalls, surrounded by fresh produce, deeply breathing in the wonderful smells of earthy, spicy fall vegetables. Mmmm. And I found myself smiling despite how crappy I felt.

When illness and pain try to steal everything from my life - friends, family, health, happiness, fun - I find myself eventually refocusing on those things that are most important to me, and those simple things that bring me joy. In a world complicated by medications, symptoms, doctors, hospitals, treatments and bills, it is incredibly refreshing to enjoy the simple beauty of the first winter squash of the season. That joy doesn't make the pain and illness go away, but it does give me a way to step outside myself, even if just for a minute. And it gives me a moment of slowing down.


Be well,
MJ

climbing back on the horse

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 ominously looming over my daily life. I can squeeze out a few hours here and there throughout the week when I feel okay, or even happy, but sure enough the gloom comes back. Like dark, sticky cotton candy.

It seems like each week brings more difficulty to deal with. DF found out that the last day of his seasonal job is October 31; after that, he'll once again be unemployed with no new prospects. (At least this time, there was notice.) A few weeks ago, I quit one of my part-time jobs after it became very clear that the increased Anxiety was not worth the measly paycheck. And as I posted last week, there was the massive failure of my recent medication trial. Everything just keeps piling up. 

In the midst of all this upheaval and getting used to a new work schedule, I've let some components of my treatment lapse. I haven't had a massage in several months; I had been going weekly. I've pretty much stopped keeping my headache diary. Last week I even skipped my Nia dance class because I still had the citalopram in my system. I've given myself permission to stop keeping my headache diary, as right now it's causing more stress in my life. I plan to start keeping it again either when I start another med or the beginning of the new year (whichever comes first). I have a follow-up appointment at the end of March with my headache doc, so even if I don't restart my diary until January, I'll have three months of records to show him.

Massage is a different story. I know it helps me to feel better by releasing the tension in my neck and shoulders, even if it doesn't directly help my Migraines. It's silly, really, that I haven't just called and scheduled an appointment, but in the murk of daily life it's easy to avoid making phone calls.

So, my goal for this week is to make that call and restart my weekly massages. I'm focusing on not being hard on myself for ignoring this part of my treatment plan. It's difficult to continually put so much energy into an intensive treatment regimen that seems to offer little return. But every little bit does help, and incrementally I hope I'll improve.

A big part of being able to cope with chronic illness is setting small, achievable goals and recognizing when I achieve them. I know this, but I'm writing it here to remind myself. This week's small goal is scheduling a massage appointment. Hopefully I'll start to overcome this inertia, this feeling of wallowing, by taking that first baby step. Then I can look at my other goals (adding a weekly tai chi class, for example) and start working toward those.

And maybe, just maybe, the regular massages will start to chip away at my stress.


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

side effects and self-doubt

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 felt overwhelmed. I put a call into my doctor's office on Thursday morning to see if he thought I should wait out the side effects, and, not surprisingly, got a call back from his nurse telling me to discontinue the medication.

And now I feel myself plagued by self-doubt and "what ifs".

I know that any medication I try will have some side effects. I know that many side effects will improve with time. It's hard for me not to feel like I'm giving up on a medication when I've only taken four doses of it. Dr E told me it would take about six weeks to see if the citalopram would help me, and I know that it can take two to three months for a daily medication to kick in. So stopping after only four days seems like quitting.

Clearly, my body was sending me very strong signals that it did not like this medication. The side effects in question were those listed under the "call your doctor immediately if you experience these" category. (In the interest of not scaring off other patients who may be trying this medication, I'm not going to detail the side effects here, as this is a very effective medication for many people.) And obviously Dr E thought that the side effects were serious enough to outweigh any potential benefits.

But I still have that little voice in the back of my head, telling me that I should just suck it up, that everyone experiences side effects and I should stop complaining. That if I ever want to get better, I need to just push through it until it gets better. In the face of this negative self-talk, it's very difficult to maintain perspective on the situation. (And this kind of self-talk is a key characteristic of my Depression.)

Every time a medication is crossed off the list so clearly and quickly, it makes it that much more difficult to try the next one, as I try to push past the fears and anxiety about past side effects. Because I feel so sick all of the time, it's hard to push through the added sickness of side effects - and it seems massively unfair that I should have to do so. But really, what is fair about chronic illness?

So now I'm left marking time until the citalopram completely clears out of my system and my body has time to get back to its normal level of crummy. And I'm trying not to be too hard on myself in the meantime.


Be well,
MJ

learning to ask for help

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 self-care, and was able to enjoy our vacation - even if a lot of it was spent in the condo we stayed at.

When we came home last week, the real world seemed to crash back into place around us. All the stress we had been ignoring about unemployment, finances and everything else hit hard. I realized - on the plane ride home, in fact - how much my Anxiety has gotten out of control over the summer.

Like many Migraineurs, I struggle with a number of comorbid conditions: Migraines, IBS and mood disorders (namely Anxiety and Depression). I've struggled with bouts of Depression in the past, particularly during my third year of college when I first got sick. Even after my Migraines and IIH were successfully treated, the Depression stuck around for a long time.

It's no secret to me that this has been a difficult summer. DF and I have not been able to land "real" jobs after being laid off last November. Between our paychecks and unemployment checks, we're making ends meet and aren't in any immediate danger, but everything feels very precarious. My health has only just started to improve from the very low point of last year. I've been dealing with a triple whammy, in a sense, of my unemployment, DF's unemployment and my crummy health.

This summer has marked a vicious cycle of Anxiety-pain-Depression-Anxiety that I just cannot get out of. The Anxiety about all the life stresses feeds my pain, and the pain in turn feeds my Anxiety. While I'm having less pain overall (thanks to the acetazolamide for my IIH), I still have not had any break in my pain in several years, and I still have a long way to go to find an effective treatment regimen.

I saw Dr E for a follow-up appointment on October 1, the day after DF and I got home from vacation. As I sat in the waiting room writing down last minute questions, I wrote a note about my Anxiety. It was serendipitous that my appointment with Dr E was right after vacation, when I realized how much I've been struggling, so I was willing to bring up my concerns. Anxiety and Depression are hard things to talk about, even with a doctor whom I trust.

In fact, I have spoken with Dr E about this same issue in the past, which made it easier to bring up this time. When I saw him in February, we discussed my Anxiety as related to unemployment; at that point neither DF nor I had any job prospects on the horizon. Dr E prescribed a low dose of citalopram (Celexa), though I never started taking it since I did find a job not long after my appointment.

But now I find myself stuck in the same position. And it's just tiring to feel all this emotional upheaval on top of my regular physical symptoms. I feel so frustrated by the constant pain, the daily dizziness and nausea, that I often just want to scream. The longer all of this stretches on, the harder it becomes to cope.

Dr E wrote me a new scrip for the citalopram, leaving it up to me to fill it any time after the appointment if I felt ready for it. (He understands and respects my reluctance to try new medications after a series of really bad reactions.) I decided earlier this week to get it filled, and will be starting it next week. And I'm nervous about it.

It's so difficult to ask for help because it can be so difficult to admit to myself that I need help. I can't think myself out of my mood disruptions any more than I can think myself out of my Migraines. While I can do relaxation exercises and other non-drug therapies to mitigate my symptoms, they will not change the underlying chemical and neurological problems. So Monday evening, I will take my first dose of citalopram and hope for the best.

I'm learning, once again, how to ask for help when I need it, and trying not to feel like a failure for needing it.


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

photophobia

Eyes open too wide
Bright burning sun, eyes closed, seeing red
Colors bleached out, muted

Sandy eyes, dry, bloodshot
Pupils confused
Pain lurking behind eyelashes

Facial tension
Skin too tight, fragile skull
Crows clawing eyes

Migraine
Frying my brain

radio silence | part 1: another acronym, another diagnosis

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 as a Migraine preventive, so we were hoping it would help in the head pain arena, as well. I spent a few weeks trying to gather my courage enough to swallow that first pill, and in the meantime, found a part-time job, so I never did try it.

During my follow-up visit with Dr E in April, he asked me where I wanted to go with my treatment. I had seen some success with Dr P, and obviously I was feeling skittish about trying new prescription drugs. So I brought up an issue that had been simmering in the back of my mind for over a year - are my vague symptoms actually due to Idiopathic Intracranial Hypertension? I certainly have at least mild head pain every day, with dizziness; as well as unexplained Migraine attacks, nausea, shoulder and neck pain, and tinnitus. Dr E and I had discussed this when I first saw him in 2008, and we had decided to try a few other treatment ideas first before further exploring IIH.

When I brought up IIH again, Dr E agreed that we had come to a point in my treatment where it made sense to test for it. He scheduled me for a lumbar puncture at the end of April. The procedure itself was fairly straightforward (though massively anxiety-producing) and I found out that my pressure is higher than normal. I ended up with a truly terrible spinal headache after the LP that left me completely bed-bound for a week, but I was able to get a blood patch to treat the headache.

While I'm certainly not happy to have another thing wrong with me, getting diagnosed with IIH has opened up my treatment options. Dr E prescribed me a very low dose of Diamox (acetazolamide) to reduce my spinal fluid pressure. I've been taking it since May, and just increased my dose a month ago, and I'm already seeing some positive effects. I'm tolerating it better than the other prescription preventives I've tried, so all in all, the LP was worth it.

I still have a long way to go in finding an effective treatment regimen, but adding the Diamox to treat my IIH has been an important step. I'm having less overall head pain, fewer Migraines and less severe Migraines. Every little bit helps, so I'm glad I followed my instincts and discussed IIH with Dr E.

More to come...


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

scars, pain and understanding

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 struggles. She had no idea I had continual head pain and live such a regimented life. At the time, I was still very sick - my head pain was never below a 4/10 and my Migraines turned severe (7+) several times a week. Add the melange of daily symptoms, and I was in very sad shape.

B remembered that conversation from last year, so she sought me out tonight to share her story and her struggles. It was very touching and heart-wrenching at the same time. It seems that much of her trouble is at least partially due to being brushed off by her doctors (a familiar story to many of us).

Probably the most amazing part of the conversation is how many of her words mirrored my very same feelings from last year. She's dealing with a lot of anger right now, reminding me of my own anger I'm finally letting go of. I remember how overwhelming the anger would be sometimes, borne out of an inescapable frustration with my debilitating pain. I was angry with everyone around me, especially those without chronic pain who couldn't possibly understand what I was going through. Mostly I was angry that there was no "fix" for my chronic pain, and I could only hope to manage it for the rest of my life.

It's only in the last few months that things have begun to turn around. My treatment regimen, coupled with a lot less stress, is finally working. Getting rid of three major stressors in my life (found a part-time job, finished moving to our new apartment and sold my car) has significantly improved my health. I'm still not where I want to be, but I'm much closer than I was last fall.

I couldn't really give B any answers, but I could offer her some hope and support. I pointed her toward a number of resources on the web. I shared some more of my story that I hadn't told her before. But, most importantly, I offered her compassion and understanding, something I've found in abundance here in the online chronic illness community.

My talk with B was a strong reminder that at any time, any one of us can cross from the world of the healthy into that of the sick. But it's also a reminder that we can manage to find our way back among the healthy, even if we bear the scars of the journey.


Side note: if any of you have suggestions for resources for female reproductive disorders and related pain, please leave them here in the comments so I can pass them along to B.


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

courage

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, and December was actually a very good month. Unfortunately (and I explained this to Dr E) the stress of unemployment has hit me harder in the new year, so I'm back to frequent days where my pain is 5+; I went from 12 such days in December to 27 in January. I know that the stress and anxiety are exacerbating my Migraine pain/symptoms and IBS.

Dr E suggested I add a low dose of Celexa (citalopram) to my regimen to help deal with the anxiety and depression related to the unemployment situation, since the emotional upheaval is having such a negative effect on my head. He specifically suggested Celexa because it has a low side effect profile and has seen success with it in his patients (and few side effects). He remembers well the trouble I've had in the past, so he's starting me on a very low dose. He thinks that the Celexa will probably be a temporary thing to help me get through the unemployment stress, so I may try going off it when the job situation changes.

We also discussed my current triptan, Amerge, which usually works pretty well for me with few side effects, but can take 3 or 3.5 hours to work. I'm keeping that as an option, but he also gave me a scrip to try Axert.

Overall, it was a very good appointment.

I finally picked up my scrips for both drugs yesterday afternoon, but I hadn't quite worked up the courage to try the Celexa last night. Those of you dear readers who have followed my blog for a while may remember that I've had some very strange and severe reactions to meds, most recently Lyrica and even Botox. After my double reaction to the Lyrica and Botox last fall, I told Dr E I wanted a complete break from any prescription preventive meds for a while, which was when he referred me to Dr P. I feel I've made great progress with my new regimen so far, though I still have some way to go.

So tonight, I'm going to try the Celexa. I make it a point not to read the potential side effects on the pharmacy leaflet myself; instead, I read all of the other information and have DBF read about the side effects. This method has worked well for me in the past.

It's still scary, though. These are powerful drugs we take to try to address our Migraines, or, in this case, my anxiety and depression. I can say I would not be as ready to try the Celexa if not for Dr E; without even looking at my chart he remembered the severe reactions I've had in the past. (He once mentioned to me that I redefine medication sensitivity and he would have to be extra cautious in my case.) The headache specialist I saw before Dr E never would have understood this, or have been willing to individually tailor my treatment.

Chronic illness requires a lot of courage: courage to continue on through pain and sickness; courage to try new medications; courage to face the unknown, trial-and-error nature of our treatments. Tonight, I will screw my courage to the sticking-place and try a new drug. Hopefully, it will make a difference in my emotional state and help my head to calm down.


Be well,
MJ

letting go of superwoman

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 was filled with a feeling I haven't had in a long time: unconditional self-love.

Contrast that with the negative self-talk and complete lack of self esteem I've been experiencing all week, after a painful accident. I was getting into the passenger side of DBF's van, when I opened the door and slammed myself in the head. If that wasn't bad enough, I hit my head right where my daily Migraine pain is centered, near my right temple/cheekbone. This injury has been triggering moderate to severe Migraine pain and symptoms all week, meaning I've spent much of my time lounging around the house like a slug. And berating my stupidity all that time.

Like many other chronically ill women, I've had to shed the Superwoman image pretty fast. When I was working, I simply wasn't able to work a full-time job, equally split the chores and errands and take care of myself. Even now, without the full-time job, I still am not able to divide the chores and errands equally with DBF. He's had to take on the lionshare of typical chores, as well as most of the cooking we do to maintain my strict diet.

Having to give up some of my independence for the sake of my health has been difficult, and is a daily struggle. Just yesterday, I posted on MMC that it's still frustrating and hard to ask for help, even if I'm asking DBF, someone who will never second-guess my judgment about my health. While I've rejected the image of Superwoman, her shadow still lingers and sometimes I can't let go of the (unfair) comparison.

But after a week of calling myself an idiot, I'm remembering the hour of totally unconditional self-love I experienced on Sunday. Love that is much more healing and healthy than guilt is. It wasn't just that I loved myself and my personality; I even loved my body, as imperfect and fragile as it is.

Here's the thing. I'll never be Superwoman. I will always have Migraines, Chronic Daily Headache and IBS. But I will also always have myself and my body.

Acceptance of my chronic illness is something I struggle with every day. Acceptance of myself and my body is no easier, especially with so much stress in my life. But finding that moment of unconditional love last week was inspiring, and enough to remind me that I am worth the effort.


Be well,
MJ

grand rounds is posted

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

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

looking behind and looking ahead

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 gifts to others were very minimal this year.

Our holidays were filled with love, all the same. We spent five days with my family, filled with snow and quiet enjoyment of each others' company. DBF shared some of the cooking duties with my family and left some recipes behind for my mom. It was a nice and recuperative time.

We took the train 500 miles south to visit DBF's family and spend the remaining five days of our trip back east. While this part of our trip was anything but calm, it was a wonderful chance to see family that we don't normally see. Even though it's been two years since I've seen (met) many of them, they hugged and kissed me like I was one of their own. And this year I felt like I was.

There was a lot of stress surrounding Christmas this year - a lot of traveling, including flying; trying to find food safe for me to eat; tight finances and few presents to give out - but it is one of the best I have had in a long time. I'm left with warm feelings of gratitude and fulfillment, like I spent a cold winter's day by the fire with a good book and fuzzy blanket. This is the first Christmas DBF and I have spent together, and it just felt right.

Unfortunately, I caught a pretty nasty cold while we were away, and by the time we got home, I was in poor shape. I very rarely get sick - it's been a couple years, in fact - so I got pretty slammed. Plus, we started moving to our new apartment the week we got back, so I'm still searching for some sort of routine in my life again.

But, I actually feel rather optimistic for 2009. And that is a good feeling.

At the beginning of last year, I wrote:

I don't believe in new year's resolutions, but I am rededicating myself to my healthcare. I have my first appointment with a new headache specialist next week. I am willing to do what it takes to find a treatment regimen that will get my migraines under better control.

I am looking back toward 2007 as a year of growth for me. I've learned much more about my disease, and have started keeping a headache diary to better understand my patterns and symptoms. At least now I feel like I'm doing something toward getting better. I am looking forward to 2008 as a year to continue to learn about my disease, but also to take my life back piece by piece.

2008 certainly was not an easy year, but I feel like I did achieve what I set out to do: continue to learn about my disease and take my life back, piece by piece. I did lose ground to the Migraine beastie, when I had to resign from my board position with the AIA. But I feel I'm better able to cope with my illness than I was a year ago.

Something else I wrote about a year ago:

I think the time has come to make the jump and completely eliminate gluten, dairy and sugar. All three intolerances have a strong genetic run in my family (eggs, too). I think it's worth it to give this diet an honest try. If nothing else, I may lose some weight, which would not be a bad thing.

My problem these days is it seems like anything and everything will trigger a migraine. Stackable food triggers (or suspected triggers) currently include: MSG, sugar, soy sauce, salt, wheat, dairy. There are others I can't think of right now. I've already made the switch to organic meat (which tastes a lot better anyway).

I think that I just need to jump in with both feet and give this diet a real chance. I have migraine pain every single day. If cutting out these foods will cut down my head pain even a little, it's worth it to me right now.

I've now been gluten-free for a year now. The full diet eliminates gluten, cow dairy, MSG, preservatives, artificial sweeteners and caffeine. I've also limited my intake of alcohol, sugar, salt, eggs, nitrites/nitrates and non-cow dairy. I eat organic vegetables and meat as much as possible. I'm proud to say that this diet has massively improved my IBS and cut out my (few) Migraine food triggers (MSG, some wines and artificial sweeteners). I've also lost about 45 pounds, and am a much healthier size 12.

I certainly didn't start the diet with the intention of losing weight, but I've found a much healthier self. I still have a long way to go before my Migraines and IBS are well controlled, but I've actually made a lot of progress in the past 12 months. 2008 was a hard year for many reasons, but it was also a year with many successes, and I need to remember that.

So, here's to 2009. I still don't make new year's resolutions, but I will start out 2009 with much the same intention as 2008: I want to continue to learn as much as possible about Migraine disease, and take the best care of myself that I can.

Happy new year, all.


Be well,
MJ