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Archive for the ‘Rant’ Category

Another Day, another Migraine

November 8th, 2009

Waking with head pain. Hoping it will go away. Have a work obligation - know if I take my triptan I won’t be able to drive. Weighing how much trouble it will cause to miss the meeting. Cup of coffee damping down head pain. Driving off to meeting. Sitting through it with hand pressed to right eye, shifting to shield both eyes from bright overhead lights. Meeting ending. Weighing whether I should drive. Getting home with help. Pain increasing all the way. Nausea beginning. In the door, family brings me food. Take sumatriptan injection. Incredible pain from injection. Unbelievable that I can do that to myself. Counting twenty seconds while holding burning needle in arm. Arm hideously sore to the touch. Initial increase in head pain from injection. Lying down. Breathing. Breathing. 3 in 5 out. Directing breath to head pain. Funny sensation in chest & stomach from sumtriptan. It passes. Pain eases. Lying very still for fear of reawakening it. Exhausted. Day on the bed. Second one in a week. Another day, another Migraine.

- Megan

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SAD People for the elimination of Standard Time

November 2nd, 2009

Want to join my crusade? I say down with Standard Time! I want my Daylight Savings Time back! Do you hate changing the clocks fall and spring? Concerned about the confusion, missed appointments, sleepiness, and increase in traffic accidents that happen in the week following a time change? Or do you suffer from Seasonal Affective Disorder (SAD) like me, and get depressed as the days shorten and the dark closes in?

The whole thing is confusing. Apparently the original idea was to save energy (candles and gas light) in the Summer by shifting an hour of daylight from the morning to the evening. For years I thought it was the other way around, that the Daylight Saving referred to the winter time when it is less dark in the morning, so that presumably the farmers can milk the cows without too many candles. But no, Daylight Savings is Summer time, and that dark dreary depressing time of year when it’s pitch dark by 6:00 p.m. is called “Standard Time.” Well I have to say I don’t like their standard! My standard is to have the light in the evening when we can use it! Sorry farmers, but it’s dark when you get up to do those chores anyway. I know it’s hard to get up in the dark, but I don’t want to waste my daylight sleeping through it.

I have a very hard time with this week of the year.  It’s like having jet-lag without going anywhere. I feel groggy and confused, and I get very blue when the sun goes down. I do get used to it, but it’s the beginning of 4 months of coping with darkness, until February when the day again lengthens enough that it feels like there is some hope left in life, somewhere.

As a Migraineur I am troubled by bright sunlight, though I can generally deal with it by wearing a hat and sunglasses and seeking the shade when outdoors. But I need the sun to feel okay emotionally - dark days make me sluggish, sleepy and sad. Yes I can get a light box and spend some time each day soaking up brightness. It’s not that there aren’t compensations. I just want Daylight Savings Time all year round. Endless Summer? Kind of. Who’s with me?

- Megan

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Socialize my Medicine, Please!

September 23rd, 2009

I went to a business lunch & learn presentation today, given by a very nice insurance agent, all about health insurance. He covered the history of health insurance, how we got in the mess we’re in today, and some ideas about how to fix it. His intention was to give business owners an idea of some options and choices that exist now. Well, we didn’t really get far into that last part, as so much of the time was taken up with people’s impassioned views on the subject of our health care system. Not surprising in the USA today.

A lot of views were expressed about how people overuse medical care, and doctors over-test and over-prescribe in order to cover their butts against potential liability, how we expect higher standards of care than in the past, how we take too many prescription drugs and don’t emphasize prevention enough. I can get with most of that, as far as it goes. I think health education and healthy lifestyle choices could be much more emphasized. I think the practice of defensive medicine is a real problem. But I don’t think the answer is to turn back the clock and say if you injure your knee you should just live with the limitations for the rest of your life, rather than having rehabilitation available. I don’t think having real effective treatments for conditions that were taken for granted throughout human history is a bad thing. People don’t have to suffer like they did - throughout human history.

It was more than I could do in the short time we were together to really make the case for chronic illness, though I tried. We all need to be responsible for ourselves, and take care of ourselves, and looking to a doctor or a pill to solve everything is not the answer. But many of us do not have the option to go without medical care - we cannot function without it. And the advances in medicine that may be seen as excessive or unnecessary by some are not happening fast enough for us, to help us function.

Many of us with chronic illnesses are living the healthiest lifestyles imaginable. We’ve cut out the unhealthy things that others just think they should cut out. We don’t have a choice because these things make us sick now. One guy said he thought it was crazy that healthy people and sick people should pay the same insurance premiums. This shows the problem with a traditional, for profit insurance risk model - but how can any rational person say that you have to be extremely wealthy to be a sick person? Should I pay twice (or five times) as much for my insurance as you? In other words if I get sick, if I have a genetic predisposition to disease, have an accident, or am just unlucky, I should go broke and end up an the street in order to pay for my care? Or maybe I should just die? A pure for-profit insurance model like this guy was championing, that’s the real death panel.  (Choosing who should live or die based on ability to pay. We have that in this country right now!)

I’m responding to things that I couldn’t respond to at the time without completely diverting the conversation. Unlike some wingnuts in town hall meetings around this country, I’m polite enough not to shout people down. Most of the time.

But what really got me was when we started talking about the Canadian model - interestingly, our presenter was a Canadian, living in the US for the last 15 years. He debunked the myth that people wait years for needed surgery in Canada. The same guy whose views I took issue with above said that in Canada the health care is free but the beer is really expensive. He said, “I’d rather have a cheap six-pack than a heart transplant.” Now listen, he was trying to be funny, but come on. Ask anyone on the street if they’d rather have a beer or a heart transplant, and chances are only those who need heart transplants are going to opt for the second choice. Even if you don’t like beer… The point is, that if you need a heart transplant, you should be able to have one without worrying about losing your life savings, or dying without the care you need. And yeah, go on and tax the unhealthy things to pay for the healthcare. Makes sense to me!

- Megan

Hit in the head image courtesy of Pawel Loj.

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Treating-People-Like-Swine Flu

May 2nd, 2009

I don’t know about you, but I was not at all shocked to learn that the CDC was investigating large-scale factory-farming pig feedlots in Mexico as the probable “ground zero” of the new H1N1 type A influenza mutation.  Feedlots belonging to US agribusinesses, mind you.

According to David Kirby in the Huffington Post last week,

One of the first things they [the CDC] will want to look at are the hundreds of industrial-scale hog facilities that have sprung up around Mexico in recent years, and the thousands of people employed inside the crowded, pathogen-filled confinement buildings and processing plants.

“Swine Flu: Will Factory Farms Kill Millions?”

I’m not shocked, but I’m disgusted. Move the feedlots to Mexico where you can crowd people and animals in together in unsanitary conditions; let’s destroy the immune system of the world while we destroy the environment and the economy.  Oh don’t get me started.  Go read The Omnivore’s Dilemma.  Buy local organic food.

As for me, I’m in bed for the last two days.  My glands are painfully swollen, I have body aches and chills, I’m sneezing and coughing.  I don’t have a fever or any respiratory distress, and my family members are taking good care of me, so don’t call 911.  I don’t think I have swine flu but I feel awful so please forgive me if I’m behind on posting.

- Megan

Three pigs image courtesy of Eric Moeller.

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Sneezebushes and Sneezetrees

April 18th, 2009

Other people do not consult me about their landscaping.  That is one of the unfortunate facts of my life.  This is a spirea bush.  A most attractive shrub.  When it is blooming it has a lovely little cluster of white or purple flowers, like this:

They are very attractive.  The purple ones bloom from spring to fall and have very little smell.  The white ones bloom in spring and have an acrid smell that makes the inside of my nose tingle, and make me sneeze up a storm. I call them Sneezebushes.  I am allergic to them.  When I breathe their pollens for an extended period, I tend to get a Migraine.  Interestingly, Landscape America tells us

“Aspirin is the generic medical name for the chemical acetylsalicylic acid, a derivative of salicylic acid.  Compounds of salicylic acid are found in some plants, notably white willow and meadowsweet (Spirea ulmaria).  Acetyl- and spirea which inspired the name aspirin.”

I am anaphylactically allergic to drugs in the aspirin family! Coincidence? Hmmm…

Then there is the Bradford Pear. It is a lovely blooming, non-fruiting pear tree, much favored for landscaping along shopping streets.  Here is Witherspoon Street in Princeton, NJ, completely lined with Sneezetrees, oh I’m sorry, I mean Bradford Pears…  I don’t know if they are in any way related to spirea.  Spirea are in rose family and so are pear trees, but I am not allergic to roses or other blooming fruit trees.  The smell is similar, and the effect on me is the same, an acrid sensation in my nostrils, sneezing, and Migraine.

My neighbors across the street put in three lovely little Bradford pears in their front yard last spring. When we open the front door on a nice April Saturday like today our house fills with the scents.  Achoo! Ow! Achoo! Ow!  Me lying down with the Imitrex and the Benadryl, hoping to be on my feet later…  Well, the blooms will fall in a week or two, right?

- Megan

Spirea image courtesy of Di the Huntress; Single Bradford pear image courtesy of Deep Valley Tree Farm

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My Brain Doesn’t Like My Life

March 17th, 2009

Now mind you, I like my life. Not that there aren’t parts of it I could do without. Not that it doesn’t have its difficulties. But I do like my life. It’s just my brain that doesn’t like it. Oh and maybe my immune system? Or my adrenal glands? What system is implicated in Chronic Fatigue? I know there’s some central nervous system component to that too, so I’m probably back to my original statement - my brain doesn’t like my life.

I was reading The Migraine Brain by Dr. Carolyn Bernstein the other day and I was really struck by one of her statements.  She is discussing the brain, how it is less adaptable and tolerant of change or variance than any other organ in the body, and Migraine brains are “as high-maintenance as they come!” Our brains want us to have a calm, quiet, regular existence, with low stress levels, the same amount of good quality sleep at the same time every day, a constant level of blood sugar.  I was trying to explain this to a business associate this morning - he was suggesting that I add a second weekly 7 a.m. networking meeting to my schedule, and I was trying to tell him the effect on my system of getting up even one day a week early enough to make a 7 a.m. meeting, when I don’t get up that early other days.

In reality, I have two teens who have to get up at 6 to get to school and who stay up late doing homework and I can’t always get to bed as early as I would like, or sleep as late as I would like, even though my husband takes care of most of both the early and late parenting duties. In reality there is a great deal of stress and financial pressure in my life, and I need to work, and I need to continually generate and reinvent the work that I do, since I work for myself. My stress levels mean that I don’t sleep as well as I might, and that leads to more fatigue, and more Migraines. More fatigue and more Migraines mean I get less work done, and that’s a vicious cycle.

Thinking about having a high maintenance brain has really amused me. I have never seen myself as a high maintenance kind of a woman! But I started speculating, if I have a high maintenance brain, what kind of life would it like me to have? Clearly it would involve going to bed by 11 each night. Maybe a bath and a massage to relax me before bed.  “Come along, Megan, time for your bath and massage.” Ah, yes.  Then I would sleep until 8 and have a nutritious breakfast in bed.  Get up and do yoga, and go for a walk.

The weather would be breezy, 75 degrees, mixed sun and clouds.  It could rain a little overnight, but never when I want to go out. Yes, I mean every day. I know it’s unreasonable, but I’m high maintenance, right? Come on!

I’m really not sure what the rest of my day would consist of, frankly it’s hard for me to imagine, but I do know that I would not have much of anything to worry about. That is non-negotiable to my brain! I could take nice little trips as long as all the other drivers drove safely and carefully and did not use their horns. I could have lovely visits with people and enjoy restaurants and movies and concerts and plays as long as no one smoked, no one shouted, there were no flashing lights, and the decibels were at a reasonable level. Whatever that is!  And no two people can ever speak to me at at the same time. And all my meals must be delicious and gluten free and arrive before my blood sugar drops too low.  Preferably without me having to think about it too much, or cook it.  Yes, I could have lots of lovely fun as long as it was all on my terms and I was home in time for my bath and massage and bed by 11.

Gee, it sounds kind of like what my high-maintenance brain wants is a permanent vacation! An expensive one! Oh for heaven’s sake, brain, get a life!

- Megan

Oh well, at least there’s chocolate.

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Don’t be SAD - Winter’s Halfway Over

February 4th, 2009

First of all, I want to say that Groundhog Day makes me a little nuts. When I was a kid we lived in an old farmhouse beside a field and there was a groundhog in the middle of that field whom we called Mr. Wiggles. (Anyone my age may remember the jello commercials.) Now I am not doing groundhog research here today and I can’t tell you whether groundhogs are true hibernators or not, but I can tell you Mr. Wiggles never, ever, came out of his hole on Groundhog Day, come sun, snow, rain, or shadow, not for hell or high water.

Now you can talk all you like about Punxsatawney Phil, but first of all, no-one ever heard of him when I was a kid, and secondly, how is some groundhog in Punxsatawney, Pa, going to predict winter for the rest of us all over the place?  I mean, if there’s a cloud over Phil, early spring right there where Phil is, and it’s sunny 17 feet away, then 17 feet away there’s going to be 6 more weeks of winter? Puh-leez! Thirdly, they actually reach into a box and pull Phil out and make a prognostication as to whether he saw his shadow or not!  I mean, how bogus is that? And lastly, and here’s the kicker, February 2nd, Groundhog Day, is the exact half-way point of winter!  So no matter what the groundhog does or does not do, Phil, Mr. Wiggles, or your own local groundhog, on February 2nd you have 6.5 more weeks of winter! Yes, sometimes it gets warm earlier, and sometimes it snows in the spring, and it’s different depending on where you live and so on.

Sorry, I just had to go there. I was born on February 4th, that’s right, that would be Today, two days after Groundhog Day, and I’ve been hearing those groundhog jokes all my life! But here’s the good news about February 2nd (and the other good news about February 4th) - it’s half-way through winter!

By the beginning of February, the days (here in the Northern Hemisphere) are as long as they are in late October. I can’t say I’ve ever been specifically diagnosed with SAD (Seasonal Affective Disorder) but I’ve read about it and it sounds like what I experience when the days are shorter. I am more fatigued, depressed, get sick more easily, get more Migraines. Of course, being indoors in a heated house also has its part - dealing with dry, recirculated air.

Who else deals with this? I use a number of strategies to make it a better winter for myself. I’ll share the ones that have helped me but I’d love to hear from any of you who have others.

Has anyone used one of those light boxes they prescribe to give you exposure to more daylight-type light in the house? I haven’t, but I’ve used full-spectrum light-bulbs (not fluorescent!) and I find they help me. Here are some of my tricks:

There are reasons why our ancestors held celebrations in the winter to remind them that light, warmth and life would return to the earth. Groundhog Day actually falls on the date of one such ancient celebration -  Candlemas. I too rejoice in the returning of the sun! But I’m keeping the warm stuff out for 6 more weeks of winter.

- Megan

Groundhog image courtesy of Matt MacGillivray; paper whites image courtesy of Bethany L. King.

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Here we Go Again

January 25th, 2009

Another wasted day. Sound familiar? I had a Migraine Friday night, treated it promptly and lay low, did everything I should do. Yesterday I woke up better, though not 100%. A state of slight soreness in the left temple that is usually a characteristic of post-drome for me, but can be an incompletely aborted Migraine. It is sometimes hard to tell. Unfortunately these monsters do not follow a consistent pattern. I took it fairly easy yesterday. I slept enough, did some light activity, I did not do anything to overtax my brain or trigger another Migraine. Or so I thought.

The only thing I did “wrong” was to stay up later than I had planned - I was in bed asleep at 12:15, about an hour later than I should have. I wanted to watch a DVD with Danny and waited for him a little. He’s trying to get a project finished and I didn’t want to rush him. The movie was also a bit longer than I expected. Add it all up and it equals not good sleep hygiene. And I woke up this morning with another Migraine. Two in three days is far too many.

I always hesitate to complain. I know there are many of you out there with daily head pain and I am so blessed not to have to deal with that. I was talking to someone just yesterday about keeping perspective, and how when our seratonin is depleted by Migraine or depression we need to try to remind ourselves that we will not always feel this way, that this is not the only true reality. Could someone please come remind me of that today? Remind me that this, what I feel today, is not the only true reality! Remind me that a Sunday spent mainly in the confines of my bedroom, doing very little other than trying to keep this monster at bay, trying to treat it and limit it to today, is not the end of the world or of the progress I’ve been making. Remind me that although the sun is sinking on a painful day, that didn’t go according to my plans, that sun is coming up again tomorrow and I get another chance? Thanks!

- Megan

What am I doing today? I’m healing my brain.

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My Brain Hurts!

January 23rd, 2009

Do you remember the Gumbies from Monty Python?  “My Brain Hurts!” “Oh, no, Mr. Gumby…” “I’ve got a piece of brain stuck in my head and it hurts…” My cousin and I used to quote this at each other in our teens, and laugh hysterically (Mike can do a mean Mr. Gumby impression). Little did I know that a few decades later “my brain hurts” would become such a refrain for me!

I have never seen “thinking too hard” on any list of Migraine triggers, and I’m dubious about stress. As I’ve discussed here before, stress is officially considered an exacerbating factor in Migraine, not a trigger. So I don’t know whether the experience of “sparks are about to come out of my ears” has any physiological basis or not.  Someday I may do some research and see what kind of scientific explanations there are for this phenomenon, but not today.

Today is a Friday. Fridays my brain has been working hard all week and I either give it the final push that sends it straight to Frigraine-land, or I get into an extended case of the sillies. I realize this is a tautology. I can’t tell you whether thinking too hard is a Migraine trigger because I can’t think that hard because that might trigger a Migraine. Does that make any sense? Probably not, but we’re going to have to live with it! Look I’ve been drafting an estate plan, researching corporate formation, reading up on the relaxation response, attending a mediation discussion meeting, giving a marketing talk, writing a migraine management newsletter, and trying to remember algebra. Among other things. If I think much harder my head will explode. I’m pretty sure of that.

A friend copied me on an email this week, introducing me to her disability lawyer, so that I can speak to the lawyer about her case. One of the things I am interested in is helping Migraineurs and others with invisible chronic illness to get disability income if they need it. Anyway, the friend closed the email by saying she was impressed at what a professional sounding letter she can still write, though it had given her a Migraine to do it! So I’m not the only one who finds that mental effort makes my brain hurt.

As I have gotten back into legal work lately, I have been using synapses in the ole brain-bucket that have been in disuse for a number of years. I don’t know if the Migraines I’ve had over the past decades have any effect on my cognitive functioning, or if it’s just those darned decades themselves doing the job. I’ve been encouraged to discover that even though I can’t always think on my feet and recall immediately how to solve a problem, if I leave it alone and come back to it everything seems to fall back into place. I’ve done things I haven’t done in 10 years, things I haven’t done in 20 years, and this week had to dust off some math skills I haven’t used since high school!

This is the good news, but there have been many panicked moments in between when I felt like my brain was short-circuiting, when I actually physically felt pressure mounting in my head, when I thought sparks were going to come out my ears. What is that? An over-active imagination? I don’t think so. I don’t have any studies to cite for you, but when I think my head is going to explode, I think it’s time to give the brain a break.

Right now my brain hurts. Just a little bit. I’m going to take a break after I write this, and do my relaxation breathing, then put on my boots and take a little walk in the melting snow.  I may manage to avoid a Migraine tonight. I have to say I’m encouraged by the resiliency of this organ, this thinking organ that has been ailing, and aging, and working hard, that I need to earn my living and to see me through all the years of my life to come. I also need to remember that like any other part of me, I can exercise this brain, but it also needs its rest and relaxation, it needs both to stretch and to recover.

- Megan

There’s a piece of brain stuck in my head. Thank God!

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Testing for Medication Allergies

October 13th, 2008


Long story ahead.  I’ve been trying to get tested to get more information about the specifics of my medication allergies.  I’m allergic to ibuprofen, likely all aspirin derivatives (NSAIDs) and possibly also acetominophen. Long story which you may have read here, 2 near-death anaphylactic reactions to Advil, hives from Tylenol, swollen lips from an aspirin-based product, yada-yada.

My allergist suggested at the time (nearly 6 years ago) that since all these reactions happened within a few months, when my system calmed down I might not be allergic to everything. But said allergist would not do challenge tests on me for the medications for fear of liability, and she was also a screaming nasty unprofessional person whose sorry butt got fired.

Lo, 5+ years of living without these meds later, my headache specialist would like me to get tested for aspirin and acetominophen to see if we can expand my available Migraine medication options. My primary doctor told me 6 months ago that he thought he could do such a test in his office. The idea would be that I would actually ingest a small controlled amount of the drug in question and the staff would stand by to save me if I started going into anaphylaxis. Sounds like fun, no?

So last week I went to talk to my primary doctor about doing said challenge tests in his office. He
discussed it with me in more detail. He wanted to find a less dangerous way and proposed testing my blood for antibodies to the chemicals involved. This indicates whether there is a sensitivity, but I asked him, “Does having a sensitivity tell you whether the body would react anaphylactically?”  He went off to research it and concluded that no, it wouldn’t. I just got
a call back from his nurse saying there was no way to test except the “old-fashioned” challenge test, and they felt that could only be done in the hospital with a crash cart. So I should find an allergist who would admit me as an inpatient and do the test in the hospital.

Is this back to square one? I’m imagining calling allergists’ offices and saying, “hi, I’m looking to make an appointment see if the doctor would be willing to put me in the hospital, give me something that might kill me and then stand by to save my life! Oh and by the way, I really am counting on my life being saved! Want to take me on as a patient?” The fact that I am about to switch insurance makes this all more complicated.

I’m actually going to call Dr. G (headache specialist) and see if he might think
an allergist associated with his hospital would do it. At least then it would be one doctor asking it of another instead of some crazy-sounding patient?

I’m not particularly upset here or anything, just kind of rolling my eyes. Nothing’s ever simple, is it? It’s a wonder any of us ever have time to do anything other than wade our way through our medical issues!

- Megan Oltman
Still living aspirin-free!

Aspirin image courtesy of Ritcharnd Moskow; magic pill image courtesy of [O*] ‘BharaT; map-maze image courtesy of David Bleasdale.

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