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Archive for the ‘Managing’ Category

The Language of Pain - a review

August 29th, 2010

I recently finished The Language of Pain, by David Biro, M.D. A practicing physician in Brooklyn, NY, Dr. Biro also has a PhD in literature. This interesting combination of educational disciplines, together with Dr. Biro’s own experience as a patient with a blood disorder, leads to his thoughtful and philosophical writing on the isolating experience of pain. I presume that his earlier book, One Hundred Days: My Unexpected Journey from Doctor to Patient must focus more specifically on his personal (and unexpected) experience in bridging those worlds. The Language of Pain is a more general and outer-focused book, discussing how profoundly isolating the experience of being in pain is (be it physical or emotional pain) and how important it is to find means of expressing the experience.

The Language of Pain is an interesting read, pointing out that an understandable expression of the pain one experiences is necessary both to get proper treatment for the pain (or the underlying condition that causes the pain), and to keep people in pain from being isolated from their families, friends and community. Drawing on many examples from art and literature, Dr. Biro explores how metaphor enables us to take the diffuse experience of pain and put it in terms that others can understand. The book is illustrated with some of Frida Kahlo’s gripping paintings, as well as patient-generated works of art gathered by Deborah Padfield in a pain clinic in the UK, and other art. We read many passages from literature describing pain, disease, and bodily peril, from works by Tolstoy, London, Crane and Joyce, among others.

This is not a long book, but it took me a long time to finish. I found that some of the descriptions of pain were, well, painful for me to read. It may be that for one living with chronic pain, this book hits too close to home. Nor is it an easy read. His points are excellent, but perhaps Dr. Biro couId have expressed them in a more accessible manner. This may sound funny coming from me; an inveterate user of big words. I could have used less literary and philosophical analysis and more practical examples of how finding language for their pain has helped pain patients.

The book is subtitled “Finding words, compassion and relief.” Without doubt the writing is compassionate, and ignites the reader’s compassion. There was inspiration for me personally in the examples of words used to express pain; certainly I remembered them in my own moments of pain, and tried to be more conscious of expressing myself. It is the “relief” that I would like to have heard more of in the book. Maybe because relief from pain is something I long for in my own life, and for other sufferers. It wouldn’t be fair for me to fault Dr. Biro for not providing a magic wand! He pulls it all together very well in his postscript, stating:

More than just communicating one person’s experience, the metaphors of great writers contribute to our collective experience of pain. They add to our ever-growing repository of language, and to our ever-growing understanding of what it means to be human. Indeed, we should think of our great artists no differently than our great scientists. Both have profoundly practical goals; each works to help us understand and talk about what is not fully understood or communicable. But where the scientist shines his searchlight on the objective world, the artist strives to illuminate the subjective one.

One of the things that fascinates me most is the meeting and communication of our left and right brains, our analytical and intuitive sides, the scientist and artist in each of us. I love thinking about what having both an MD and a PhD in literature would bring to a person’s thinking and understanding of the world. Dr. Biro thank you, you have done an elegant job of sharing your thinking with us. I’ll expose my own prejudices as a coach when I ask, next book, would you give us a little more of how to use those two sides of the brain for relief in our own lives?

- Megan Oltman

To keep the FTC happy I will disclose that the publisher asked me if I might like to review the book in my blog, and sent me a free copy so that I might do so. They did not pay me to puff the book, and I won’t receive anything else from doing this review unless some of you decide to link in to Amazon and buy it there, which would net me a few pennies per book. The publisher has no doubt given up on me, as they sent me the book before it’s publication in January of this year.

Tags: chronic pain, David Biro MD, Deborah Padfield, Frida Kahlo, Jack London, James Joyce, Leo Tolstoy, living with pain, pain, Stephen Crane, The Language of Pain
Posted in Books, Communicating, Managing, Medicine | Comments (0)

A Certain Level of Brain Freedom

August 22nd, 2010

I am enjoying a long stretch of freedom from pain in the brain. Hooray! I have had only six Migraines since late June. Less than one a week! A better rate than I’ve achieved in the past three years, at least. I began taking the blood pressure medication Lisinopril in late June, and this seems like a winning combination for me. My current regimen includes:

• Nortriptyline 50 mg at bedtime (a tri-cyclic antidepressant, taken at a very low dose for Migraine prevention, it has also helped my sleep and lowered my anxiety level);
• Lisinopril 20 mg (10 at bedtime and 10 at breakfast);
• High potency multi-vitamin;
• Magnesium 400 mg;
• B-Complex 100 mg;
• B-2 300 mg;
• CoQ10 300 mg;
• Armour Thyroid 60 mg;
• Iodoral iodine supplement;
• DHEA 10 mg at bedtime;
• Melatonin 3 mg at bedtime;
• Omega-3 fish oil supplement;
• Pro-greens pro-biotic supplement;
• At least 84 ounces of water per day;
• daily walks;
• daily relaxation practice.

That’s about 15 pills in the morning and 6 at bedtime. If that’s the price of freedom, I can live with it. As always, an unintentional experiment proved how well this regimen is working for me. A few weeks ago I had a Migraine on a Thursday evening and, as I sometimes do, forgot to take my bedtime pills as I was treating the Migraine and everything else went out of my head. The next day we were leaving just after work for our cousins’ beach house and I got up early in foggy post-drome and packed for the weekend before work. I forgot to pack my pills! So just as Danny was leaving the house to come meet me at my office, I called him and asked him to pack them for me. He did that, but when we met up and transferred the bags from the car he was driving to the other, the bag of pills got left behind. We discovered this at about 10 pm at the beach house. So I went without pills for a second night in a row, and missed my morning doses Saturday morning. Danny was a hero and drove over 6 hours round-trip to go get my pills so I could stay through Monday. Two nights and a morning without had a cumulative effect, though, and I had a pretty severe Migraine Sunday night.  It is now two weeks later, took my pills every day and no Migraines in that two weeks!

My Migraine specialist, Dr. Bill Young of Jefferson Headache Center, had said to me , “Six to seven Migraines a month isn’t good enough. We can do better!” (Love this guy! Compare with the last guy who thought I should be satisfied with reducing from 10 a month to 7.) So when I went to my last appointment in late June with the news that my blood pressure had been running high, for the first time in my life, he was excited! I had to tease him about that, how many physicians would say, “Oh good!” on learning that their patient had developed high blood pressure! But he explained that anti-hypertensives can be excellent Migraine preventives, but can’t be prescribed if the patient’s blood pressure is too low. He was confident that the two medications together, along with all my other supplements, would produce better Migraine prevention results for me. And so far, so good! I try not to really measure a trend until it’s been going on for several months, but early results look promising. I am loving the extra time and energy I have for hanging out with family and friends, and getting some chores and projects done around the house. Now if I could just manage the fibromyalgia…

For any of you who see doctors who only know a limited number of Migraine preventive options, or who aren’t comfortable with combining several medications, or who aren’t knowledgeable about supplements, find another doctor! If you aren’t doing daily relaxation, meditation, yoga or another practice to calm your nervous system, get on it! It can take time, but most of us achieve a significant level of brain freedom.

Hope you’re doing well. Leave me comment and let me know how you’re getting on, okay?

- Megan

Smoo cave waterfall photo courtesy of Subflux.

Tags: fibromyalgia, Jefferson Headache Center, managing life with migraine, migraine, Migraine preventive medication, William Young M.D.
Posted in Managing, Medicine, Uncategorized | Comments (0)

Who You Calling Disabled?

June 5th, 2010

I hesitate to call myself disabled. I work 25 hours+ a week at a demanding job, I do get out and see people, sometimes, and I’m down to only 3 or 4 days a month in bed. Most days I can wash the dishes and straighten up a bit, more than half my days I get some exercise, many days I can manage the laundry.  I’m down to 5 to 7 Migraine days a month, from 12 to 20 a few years ago. Although I have some fibromyalgia pain many days, days like today when I feel wrung out and ache from head to toe don’t come more than 2 or 3 times a month. So who’s calling me disabled?

I push forward through my life with a great deal of determination and most of the time I confidently expect to get better and better. I have learned so much about how to take care of myself, how to manage my various conditions, and I’ve really improved so much. Days like today, where all I can manage is some reading, some hanging out on line, some tv, when I travel from the bed to the armchair to the bathroom to the kitchen, and that’s a major undertaking, days like today can fill me with despair. I may never get any better than this. I have to accept that possibility - not that I won’t keep on getting up and being positive (mostly) and working striving and pushing (and breaking down when I push too far). But maybe this is as good as it gets.

I am researching Migraines and Social Security Disability for an article I’m planning to write. I encountered the blog of a disability law firm who have helped a number of Migraineurs to get their disability recognized, and compensated. Here’s what struck me. In writing up a Migraine Disability case study, Lawyer Jonathan Ginsberg recounted that the vocational witness called in his client’s case testified that although she felt the claimant could do light duty, low stress work, that no jobs existed that would allow her to be absent 4 to 7 days a month. It’s hard to do this kind of research and really stay detached, and reading that I thought, wow, I could easily need to be absent 4 days a month! The fact that I work less than full time, and for a flexible and understanding boss, makes it possible for me to switch hours around and avoid some of those sick days. But I would be disabled under the same criteria that got the woman in that case granted disability benefits!

Then there’s the MIDAS scale. MIDAS is the American Headache Society’s Migraine Disability Assessment Test. A year ago my MIDAS score was 57 - Which is “Grade IV Severe Disability.” I have been retaking the assessment every few months, and I am down to a 30. Great progress! Guess what a 30 is?  “Grade IV Severe Disability.”

I am not knocking my progress, really I’m not. I recently had a reader write in and ask me how to take back her life from Migraine. That’s certainly a phrase I’ve used a lot. Having 5 to 7 Migraine days a month is incredibly much better than having 12 to 20. Being proactive, recognizing our sensitive nervous systems and caring for them, looking at the areas we can impact and working on them, all of these things do make a difference. I am doing better all the time, building up my stamina (though slowly), and managing these days to earn somewhat of a living, which is nothing to sneeze at. But I felt I needed to tell this woman, you can take your life back in the sense of being in charge of your life, but that doesn’t mean you can make the disease go away.

There come those days, like today, when I slam into the brick wall of my own limitations. I worked a long, hard, stressful week this week and today I woke up feeling like I had been pushed through a strainer. Do any of you recognize that one? I’ve felt it on and off for many years, at least ten, and now I recognize it as a sign of a fibromyalgia flare. I feel strained, like my nerves and muscle fibers have been stretched, shoved, pushed, shredded, sieved, including the nerves in my temples that start the Migraines. Days like today feel blank, wasted, and I cried this morning at the prospect of a life ahead filled with days like this.

My disability is invisible, at times even to me, but it’s there. I will keep on striving. And I also need to be with what’s so, that this is who I am. I am this person with a hyper-sensitive nervous system, I do need days of recovery from just the normal everyday days of life.

I know I’m incorrigible, but I have high hopes for tomorrow.

- Megan

Tags: disability, fibromyalgia, MIDAS, Migraine disease, Social Security disability
Posted in Managing, Musings, Uncategorized | Comments (0)

Surviving the Perfect Storm

May 15th, 2010

My Migraine triggers generally include: lack of sleep; sleep at irregular hours; missing meals or going too long without eating (low blood sugar); working hard when tired (over-exertion, let-down after stress); hormonal fluctuations; electrical storms and barometric pressure changes; loud noises; crowds; smoke; crying; change of altitude.  Last night I sat through a perfect storm of triggers without actually getting a Migraine. Every trigger but the last three were present.

It went like this: I went to my Friday morning BNI meeting, which involves getting up at 6. That wouldn’t be too bad if I managed to get to sleep by 10 or so, but I never do. I go to sleep between 11 and 11:30 most nights and I have a very hard time cutting my evening shorter. Ideally I would go to bed and get up at the same time every day; it would be best for Migraine prevention and make those Fridays easy to bear. But I live in a household of night-owls and I’ve never been able to reconcile myself to having a completely different schedule from the rest of my family. Besides, most of my favorite tv shows are on from 10 - 11! So I got up and got going on less than 7 hours of sleep.

I worked hard all day, working with an intensive focus towards a deadline. It was a warm muggy day with thunderstorms in the forecast, and the building storm was palpable in the air. Then at the end of the working day I attended a charitable event that I was invited to by a friend. It was really a lovely event, a tour of a designer show-house and a dinner in a tent in the back with a couple of presentations, then arias by a couple of opera singers, and finally they held an auction.

I didn’t make it that long though. The thunderstorms broke while we were touring the house, and it was still raining when we went out to the tent. One of the sponsors of the event was a local appliance store, and one of the presentations was on outdoor kitchens. So they got a great local chef to cook a meal (for at least 100 people) on a huge outdoor grill that was being auctioned off. All a very nice concept, but apparently no one had really thought through how long it would take to grill several courses for 100 or more people. They began serving wine before the presentations started; an hour or more later they passed around some little cubes of grilled bread. The next course, grilled vegetables, came out more than half an hour later. then some grilled seafood at least a half hour after that. Each course was served on large platters to be passed around and shared. Each course gave each of us enough to tantalize but not enough to keep us from being hungry.

All the while there were presentations going on, and a lot of hungry people were drinking more and more wine, talking and laughing louder and louder, halfway drowning out the presentations. Then the opera portion started, and while the singing was excellent, I was right up front and the acoustics of loud operatic singing under a tent with thick humid air all around were overwhelming. Not to mention that people had had quite a bit to drink by that time and were not sitting quietly listening to the music. The competing sounds battered at my ear-drums. The smells from the grill wafted over for hours without any food following for a very long time. After the seafood course we sat even longer without food. I felt increasingly jittery from low blood sugar, worn from lack of sleep and a long hard day, battered by the noise, closed in by the crowd, pressed on by the humidity, shaken by the storms, confused by the multiple inputs and noise, distressed by wanting to be a good guest and not feeling up to it. I had many warning twinges in my temples and felt sure a Migraine was on the way.

My dear and very perceptive friend Izzy could tell something was going on and asked me. I shared with him what was going on in my internal world. He went to the kitchen and told them I needed food right away for a medical condition. He came back with some very rare meat which I ate most of and shared some of with a few of my neighbors. I felt bad because I knew everyone was hungry. I stayed until some more meat came out, which was quite a while later. I had a little and then left to go home. I was able to drive myself home, got in and ate yogurt and cereal with milk, some quick protein and calories. Then I collapsed.

The fact that I didn’t get a Migraine is pretty amazing. My nortriptyline, and my supplements, and my regular eating, and all the sleep I generally get (except on Thursday nights), and my regular walking, and my relaxation exercises, and all the other things I am doing to regulate my system… these are obviously paying off! A year ago I am sure that just the lack of sleep and a few hours of intensive work would have given me a Migraine - I wouldn’t even have made it to the evening event.

On the other hand, I had an exhausted night of very poor sleep, and today I am having a major fibromyalgia flare-up. My everything hurts today. My head is only a little tender, though, no pounding, no intense pain there. That’s still a victory!

- Megan Oltman

Approaching Storm image courtesy of Stephan Mantler.

Tags: fibromyalgia, migraine prevention, Migraine triggers
Posted in Managing, Rant | Comments (0)

Blue Tuesdays

April 20th, 2010

On Tuesdays there are staff meetings at my new office, at 8:30 a.m. That may not be ridiculously early, but it means I have to be up at 7 and racing through my morning to get there on time. The nortriptyline I take as a Migraine preventive makes me good and sleepy, and it’s hard to wake up and move on less than 9 hours of sleep. Today I not only had to be awake but to give a little presentation at the meeting on using Facebook and Twitter for business. I am relearning some things I used to know, like how to get up and go even when I don’t feel up to it. How to push myself through times when my focus isn’t there, or I’m a bit fatigued, or to work with a triptan in my system.

Don’t get me wrong, this new job wouldn’t even be happening if my Migraine prevention regimen weren’t working quite well. My Migraines went down by about 60% in the months before I started the job. The challenges of the work routine have them back up a little again, but it’s still significant progress. If I had tried to take on the challenges of this job a year ago, I doubt I could have done it.

I also work an 8 1/2 hour day on Tuesdays and Thursdays because Monday and Friday are my short days and Wednesdays are a day off. That’s just the way we worked out for me to work a 25 hour week. It makes those long days challenging, though. If I don’t sleep well the night before (like last night) and I still go put in a full day, it can lead to an evening Migraine. Right now I am lying down with the laptop, writing to you all after dinner, with a bit of a headache. Trying to see if I can contain it by resting. That works sometimes.

One of the difficulties for me is that I can’t seem to go to sleep and get up at the same time every day the way my Migraine brain demands. I need plenty of sleep, and if I went to bed early enough to make the Tuesday wake-up hour my standard, I’d never get to see my teenage kids or night-owl husband. I’d be best off if I could take a nap to even things out, I think, but short of napping in my car that’s not an option right now.

All in all, I am very grateful to have a job, to be doing professional work and helping people, to be getting some respect and recognition, and earning a living. I am grateful that I still have Wednesdays to keep working at my Migraine coaching. I had forgotten, as a self-employed person for many years, how satisfying it is to leave at the end of a work-day, knowing I had filled the day with doing my best, and that I am done for the day. I am enjoying my evenings more, and allowing myself to relax. Except that these Tuesdays are hitting me hard!

- Megan

Sleepy law student image courtesy of umjanedoan.

Tags: Migraine coaching, Migraine preventive medication, part-time work, sleep hygiene, triptans
Posted in Advocacy, Managing, Musings, Weblogs | Comments (0)

Hormones, Migraines and Menopause

February 14th, 2010

Migraines happen when those of us with excitable nervous systems - nervous systems prone to Migraine - experience a change in our external or internal environment that triggers the Migraine process. This doesn’t explain what causes Migraine, or why some of us have nervous systems that react like this. It just describes the process. Hormonal fluctuations are one of the internal changes that can trigger a Migraine. Migraines are not “caused” by hormonal fluctuations, but hormones can be a big factor for many Migraine sufferers. One theory about why more Migraine sufferers are female, by a proportion of 3 to 1, is that the fluctuations of our hormonal cycles make us more susceptible. Interestingly, up to puberty the numbers of male and female Migraine sufferers are more even; many more girls join the ranks with the onset of puberty.

It’s hard to generalize with this disease; people are triggered by so many different things. Some women don’t notice any particular effect of hormones on their Migraines, others seem to be only triggered by hormones, and for some hormones are one of a host of possible triggers.  That said, it is common for women to experience an increase in Migraines during peri-menopause, the period of years leading up to menopause when their hormonal levels are changing, and often beginning to drop off.

I had a sharp increase in Migraines, as well as onset of fibromyalgia, and increase in IBS as I moved into peri-menopause. I have found a bio-identical, bio-mimetic hormone replacement therapy which I believe has helped my overall health quite a bit. I started the program about 4 years ago. It has not had a noticeable effect on the number of my Migraines but has definitely decreased their severity. It has given me more energy and stamina overall, which has helped keep the fibromyalgia fairly mild, I believe. It also did away completely with many symptoms of menopause that were troubling me – hot flashes, night sweats, anxiety, insomnia, vaginal dryness. The program I use is known as The Wiley Protocol.

T.S. Wiley is a cancer researcher who hit on this method of replacing hormones in a pattern that mimics the hormonal patterns of a normal menstrual cycle. Her book, Sex, Lies and Menopause explains in great detail the effects of hormones on our bodies, on aging, and how she developed her protocol.

As I understand it, pharmaceutical HRT (hormone replacement therapy) chemically creates molecules which are similar to, but not identical to, the hormones our bodies produce. If the pharma companies are not inventing a new substance, they can’t patent it or make much money from it, so you don’t find these hormones advertised widely. Bio-identical HRT chemically synthesizes the exact same molecule our bodies produce, so that when we use it our bodies treat it as if we had produced it ourselves. Bio-identical HRT is made by compounding pharmacists. There are many producers of bio-identical HRT, some of them prescribe a constant level of the hormones to be used all the time. The drastic side-effects and health complications that come with pharmaceutical HRT are caused, Wiley says, by the fact that these are not molecules our bodies recognize, as well as by the fact that the hormones are dosed at a constant level which is not normal for our bodies. Bio-identical HRT can also cause problems when dosed at a constant level.

What is different about Wiley’s program is that the hormones are not just bio-identical, they are “bio-mimetic.” Wiley invented a method of dosing the hormones so they mimic the menstrual cycle of a healthy 20 year-old woman. The theory is to recreate a time when we are biologically at our healthiest, and giving our bodies the ebb and flow that is normal for them. Some women have bad Migraines when they are younger, and bad menstrual Migraines throughout their lives. I don’t know if the Wiley protocol would help them with their Migraines. But if the Migraines began or drastically increased in menopause or peri-menopause, it makes sense to me to replace the hormone levels of a time when you didn’t have the Migraines! The drawback, I suppose, is that as long as you are on the protocol you will menstruate. There are women in their 80’s on it, getting periods. But I have found that my periods on the protocol are very regular and fairly painless. The horrid PMS and menstrual Migraines I got in my peri-menopause years are gone, as are the terrible cramps I had, both when I was young and again in recent years.

Wiley does suggest that Migraines can be treated by spreading the hormones more evenly throughout the day, instead of just in the usual morning and evening doses. I have not tried this - it makes a certain degree of sense, in evening out any hormonal fluctuations during the day. Hormones do not seem to be the only thing that triggers my Migraines, though.  If you read Wiley’s book or visit the site you might get the impression that the protocol is a panacea for all problems of aging. I don’t know if I buy into it that far, and as I said it has not been a complete solution for my Migraines. It has definitely made a big difference for me, though, and you may want to investigate it as a useful component of your toolkit.

- Megan

Neither T.S. Wiley nor the Wiley Protocol has given me any payment for reviewing these products. If you click on the link to the book and buy it from Amazon, however, I will receive a small referral fee.

Tags: bio-identical hormone replacement, Hormones, Menopause, migraine, Migraine triggers, T.S. Wiley
Posted in Books, Managing, Medicine | Comments (1)

Happy New Year!

February 12th, 2010

What? It’s 43 days into 2010!

I know, but I haven’t posted since January 7th; I feel like I need to catch up with you all. Greetings from snow-bound New Jersey!

I just saw that Medical Assistants.Net listed me as “One of the Top 50 Health and Wellness Blogs to Watch in 2010.” If that’s the case, I’d better get writing!

It’s been a busy month and a half for me. I have returned to my professional roots and taken a half-time job as a lawyer. I love working with you all to help you manage your Migraines, but it’s not keeping me busy full-time. I’m lucky to have a good set of skills to return to, and a great firm owner who knows me, likes my work, and is very flexible about my health needs.

I haven’t missed a day for a Migraine yet, though I have to admit I’ve had a few let-down Migraines after busy days at work. I am adjusting to a new schedule. That takes some time for a Migraineur - our systems crave regularity, and tend to freak out when we change things up on them. It took a few weeks to build enough stamina to have energy left for the other things I do. I am very glad that my preventive medication works well for me, and that my years of practice in managing my Migraines have given me the breathing and relaxation skills to get me through.

When I left the practice of law in 2000 I thought I’d never be able to go back to the pace and demands without frequent Migraines. I’m happy to report that my Migraines haven’t increased at all. Even better, I seem to have a reputation around the office as a calm person and a calming influence. That would have shocked those who knew me a few decades ago! Learning to manage Migraines, to keep my system on even keel, has left me knowing not to sweat the small stuff, and yes, most things are small stuff.

I owe all my subscribers a newsletter, and I am backed up with a couple of book reviews I want to give you. I have some stories about medication allergies for you and some great new products to link to. The Migraine Support & Coaching Group is going well, and I’d love to have more of you to talk to in the meetings! I think I’ve got my new rhythm down enough to be back and talk to you more often.

I hope your winter is going well. Let me know how you’re doing!

- Megan

Tags: health and wellness blogs, let-down Migraine, managing life with migraine, Migraine preventive medication, migraine support group
Posted in Communicating, Managing, Weblogs | Comments (5)

Fibromyalgia - a New Context

January 7th, 2010

The context in which we look at an issue can make a huge difference in our way of perceiving and interacting with the issue. When I began exploring the on-line world of support for Migraineurs and chronically ill folks, I came very early upon Teri Robert’s site, Help for Headaches, and there on the site, she had this badge:

I wondered at the time, was this really empowering, to emphasize having a disease? It is a disease, but we can have an impact on our own health by developing an awareness of our own systems, and learning to relax and calm their reactivity. I had spent some years learning that myself and that’s what I wanted to share with others.

The more I looked at it, though, the more I got Teri’s point. I realized that for the many of us who have had our condition minimized and scoffed at, the recognition that we have a disease is empowering. Our problems are real, and biologically based; our pain is real. We live with the consequences of having a hyper-reactive nervous system. For those of us who have wondered what was wrong with us, if we were crazy, if we were somehow bringing the pain upon ourselves, it is empowering to recognize that we have a disease, not just a headache! Starting from the context of a disease, we can learn about it, learn what impacts our disease for better or worse, learn to manage the disease, and to manage our life with the disease. Acceptance is the first step, and gives us a foundation to build on. It makes it possible to move forward. We can say, “Okay, I have this disease. Now what? What am I going to do about it?”

For over 15 years, since I was pregnant with my son in the fall of 1994, I have been living with fatigue, lassitude, body aches, on and off difficulty concentrating, frequent sinus infections, difficulty fighting off disease, and, in the last 10 years, ever increasing Migraines. I have gone down many paths to address these issues. With regard to the Migraines, I learned a great deal about the disease, worked with doctors to find medication and supplement combinations that helped me, and learned to practice relaxation to calm my system. My Migraine frequency is down considerably. Not so the fatigue and general pain issues, however. I have tried many different nutritional regimens, and learned a lot about what foods are most helpful to my body. I have gone great lengths to balance my hormones, and have definitely seen an improvement in my overall health and stamina through doing that. No matter what I did, however, the fatigue and pain issues did not change much.

Many people with Migraine also have Fibromyalgia, and as I got to know more people with Migraine I heard a lot about the other disease as well. My reaction for quite a while was, “Oh, I probably have that one too, but I don’t want to know about it.” It felt overwhelming to me to have to deal with another diagnosis. I practiced active avoidance. Then I saw Dr. Young at Jefferson Headache Center and he listened to me talking about my fatigue, and he pressed the Fibromyalgia tender points, and I gained a new context. Thanks, Dr. Young!

I’m not kidding with the thanks. It was just like Teri’s badge above, the pieces of a puzzle came together. I already knew that my central nervous system had some serious processing issues, well this was just another manifestation of that. In addition to having my neurons fire off and produce Migraines in reaction to certain stimuli, I have an increased reaction to pain and exertion. If I bang my elbow, the pain moves out in ripples from the point, increasing for a time like an echo in an echo chamber. If I expend more muscular energy than usual, my muscles ache for days as if I had the flu. If I am active and push myself either physically or mentally, I have a kind of fatigue that is beyond tired; it is the bone-weary exhaustion of someone who has been pushed beyond the limits of their endurance.

I have gained a lot from the context of having another disease - Fibromyalgia. I have gained a community of fellow sufferers, who care, who understand, whose wisdom and experience are available to me. I have gained the relief of knowing that I am not lazy, or losing my mind, or fundamentally bad, I am a person with a(nother) disease. And this context helps me to find solutions. I know now that stretching helps, and I can push myself to stretch when my muscles hurt and I really don’t want to. I know that my fatigue is not something to fight or to cover over with caffeine, but that it is a signal to rest. I know that getting some gentle exercise each day, and gradually increasing my exertion, will help me. I know that there will be better and worse days, but that each day can be handled, one at a time.

I haven’t posted for a while, and I’m glad to say that my new Migraine preventive is helping a great deal. My Migraine frequency is down by about 60% over the past few months. The medication also helps to damp down my anxiety and makes me very sleepy. It seems to increase my REM sleep, which is a sleep stage that Fibromyalgia often steals away. Sleeping better definitely impacts the Migraines; it also makes me less fatigued and less anxious. So at the same time that I have taken on this new diagnosis, Fibromyalgia, I have seen some of its symptoms decrease.

I’m learning this one. It’s a listening to my body, to my inner sense of myself, in a new way. Similar to the way I already listened, a familiar tune but in a different key, perhaps. The biggest gain from the new context is another level of self-acceptance. I am not a bad person trying to be good; I’m just a sick person learning to be as well as possible.

- Megan Oltman

Tags: disease management, fatigue, fibromyalgia, migraine
Posted in Communicating, Managing, Musings | Comments (0)

How do we Celebrate and Still take Care of Ourselves?

December 14th, 2009

For a number of years, my husband and I hosted a big post-Christmas holiday gathering for my extended family. This gathering had gone on at my parents’ house for many years prior. Each of the smaller nuclear families (mine, my siblings’, aunt & uncle & cousins’) would have their own Christmas Day at home, and then sometime afterwards everyone would get together for a big collective meal and gift-giving. Since we all live several hours apart, this would generally turn into a weekend-long extravaganza, with many people sleeping over for several nights. The part where we were all together generally involved 14 - 22 people.

My family gets along well, and while some readers may roll their eyes at the thought of so many relatives gathered, it has been a largely joyous occasion. When my parents sold their big house and moved on to an apartment and then a retirement community, my sister took on hosting Thanksgiving and we took Christmas. We cut the expense, noise, tumult and confusion of the gift giving by drawing lots for gifts to adults, and cut the cooking difficulties by doing some degree of pot-luck.

But… I went on hosting these events some years beyond when some family and friends were questioning my ability to do it. I have been living now for about 14 years with chronic illness, and when hosting big events, there have been predictable outcomes. I would wear myself out, either with clean-up and preparation, or with running around taking care of the guests in my home, or with cooking, or with trying to keep up with the mess generated by my husband’s enthusiastic (delicious) and whirlwind cooking.

My challenged immune system would hand me an illness or infection a majority of the time. Or my sensitive nervous system would react to the added stress and noise and confusion by hitting me with a major Migraine. Or both. I would try to compensate by planning better, systematizing everything. This would both create more work for me and make my husband crazy due to my micro-managing. And then there were the crowds themselves for gift-giving or major meals, where I never do well. My head would be spinning in no time, my anxiety level would hit the roof with the noise and over-stimulation, and I would become cranky and short with people. I would spend some part of the celebration closed up in a room by myself in pain, and inevitably the guests would have to pick up a lot of the work it took to get through the weekend.

We moved four years ago to our current home, which is about 35% smaller than our last home. We did a huge renovation on this house and part of our planning was around how to accommodate a big crowd for Christmas. The time we have been in this house, however, has been the same time period as the worst of my chronic Migraines. We hosted one Christmas two months after moving in, with many things still in boxes and the construction not quite complete. We hosted  one other year. When we put many tables together to sit down for a meal, you could not leave your place at the table without 2 or 3 other people getting up as well.  When we tried to open presents in the front room with the Christmas tree, some people had to stand in the next room and look on. Another year we tried doing an abbreviated gathering when some family members were away, only inviting a few others. I had mixed feelings and was not clear with everyone about this, and hurt the feelings of those left out.

Last year, with tears and soul searching, we bowed out of hosting. We went to my sister’s for two big holiday gatherings, and we’ll be doing it again this year. My home will stay quiet; our Christmas day will be simple and relaxed; we will be with family in a less stressful space. But… I miss having my family here. I miss sharing my life, my things, my space with the people I love. In answer to the title of this post, this is what we are doing to celebrate and still have me take care of myself. But… I’m running  2 weeks at a time without a Migraine these days, and have more energy, and I have to admit I am thinking about how to take the whole thing on again - maybe next year. We’ll see.

How do you celebrate and still take care of yourself?

- Megan

Tags: chronic illness, holidays, Migraines, self care, Stress
Posted in Communicating, Managing, Musings | Comments (1)

Reducing Holiday Stress - Blog Carnival

December 6th, 2009

The theme for the December 2009 Headache & Migraine Disease Blog Carnival is “Advice on & experiences with reducing holiday season stress.” This will be the Blog Carnival’s second anniversary issue, so please consider joining in! I’ve missed the carnival myself for the past few months but I’m planning a post this time. We all know that Migraines can make our holidays much harder - let’s share how we cope! To participate just use the form on the carnival web site or contact Diana Lee over at Somebody Heal Me.

- Megan

Tags: blog carnival, holidays, Migraines, stress management
Posted in Managing, Weblogs | Comments (2)