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
Showing posts with label migraine lifestyle. Show all posts
Showing posts with label migraine lifestyle. Show all posts
Friday, January 23, 2009
Thursday, January 8, 2009
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:
Something else I wrote about a year ago:
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
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.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.
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.
Something else I wrote about a year ago:
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 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 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
Thursday, November 6, 2008
complementary vs alternative medicine
Therapies like acupuncture, massage therapy, biofeedback and many others are often referred to as "alternative" therapies, and have been for years. Recently, there's been a movement toward referring to them instead as "complementary" therapies. This choice of words may not seem like a big deal, but there is, indeed, a big difference.
"Alternative" therapy implies a complete replacement of more traditional approaches, such as medication or surgery. "Complementary" therapy implies an addition to these more traditional approaches.
A perfect example of this is the difference between the two acupuncturists I've seen. With the first, Dr W, I was pushed toward accepting acupuncture as an alternative therapy, as the only treatment. Instead of preventive medication to treat my Migraines, I would use acupuncture. I saw Dr W for two months, and by the end when I saw a decrease in effectiveness, she insisted it was the fault of the medication. "I can't treat the side effects," she would tell me, "so I can't help you if you stay on these drugs." This disagreement eventually became a big part of why I chose to quit acupuncture.
I quit acupuncture in January of this year, and since then, trialed a number of preventive meds, as well as Botox, and I still wasn't achieving the success in treatment I wanted. This led to me once again seeking a more holistic approach when I saw Dr P last month.
The acupuncturist Dr P referred me to, P, sees acupuncture as a complementary therapy. She has no problem with me taking medications. (Ironic, since the only daily drug I take is Zyrtec for my allergies. Everything else is either daily supplements or as-needed medication.) P also understands that for me, Migraine is a very genetic condition - my mother and sister both are Migraineurs, and we suspect my mom's sisters and mother also suffered from Migraine. With that kind of genetic history, a "cure" from just acupuncture is not feasible. Dr W didn't understand this, or didn't agree with it. P understands that acupuncture alone will not work, and adding supplements, massage therapy, Nia dance and medication is much more likely to be successful.
I am a big proponent of complementary therapies. I think they can and do help treat difficult chronic conditions. However, for most people - especially those with complicated cases - complementary therapy will not be enough on its own (as alternative therapy), but will work as part of a larger, holistic treatment regimen. The same way one medication intervention is also unlikely to work for the difficult cases, one complementary therapy is unlikely to work. Holistic - complementary - is key.
.::.
In case you haven't noticed from my increased posting, I am already starting to feel better. My head pain hasn't necessarily changed much, though I have had a few low-pain days where I had none before. I do have more energy. Not a huge amount, but enough that I've noticed and it makes a difference. I feel like my body is absorbing the new supplements better than the ones I took before, which is good, because I'm swallowing upward of 20 pills a day. I'm having some mild side effects from both the Petadolex and CoQ10, but they seem to be dissipating (only reappearing when I've increased the dosage). I've yet to start the Nia dance, but I have a few options for classes that I will be trying the next week or so.
While I am hoping for continued success with my new treatment regimen, I also realize it's likely I will have to add another preventive medication (specifically, a prescription drug) to my regimen in the future. I'm okay with that. Hopefully, the treatment I'm trying now will mean I need less prescription medication intervention in the future.
Be well,
MJ
"Alternative" therapy implies a complete replacement of more traditional approaches, such as medication or surgery. "Complementary" therapy implies an addition to these more traditional approaches.
A perfect example of this is the difference between the two acupuncturists I've seen. With the first, Dr W, I was pushed toward accepting acupuncture as an alternative therapy, as the only treatment. Instead of preventive medication to treat my Migraines, I would use acupuncture. I saw Dr W for two months, and by the end when I saw a decrease in effectiveness, she insisted it was the fault of the medication. "I can't treat the side effects," she would tell me, "so I can't help you if you stay on these drugs." This disagreement eventually became a big part of why I chose to quit acupuncture.
I quit acupuncture in January of this year, and since then, trialed a number of preventive meds, as well as Botox, and I still wasn't achieving the success in treatment I wanted. This led to me once again seeking a more holistic approach when I saw Dr P last month.
The acupuncturist Dr P referred me to, P, sees acupuncture as a complementary therapy. She has no problem with me taking medications. (Ironic, since the only daily drug I take is Zyrtec for my allergies. Everything else is either daily supplements or as-needed medication.) P also understands that for me, Migraine is a very genetic condition - my mother and sister both are Migraineurs, and we suspect my mom's sisters and mother also suffered from Migraine. With that kind of genetic history, a "cure" from just acupuncture is not feasible. Dr W didn't understand this, or didn't agree with it. P understands that acupuncture alone will not work, and adding supplements, massage therapy, Nia dance and medication is much more likely to be successful.
I am a big proponent of complementary therapies. I think they can and do help treat difficult chronic conditions. However, for most people - especially those with complicated cases - complementary therapy will not be enough on its own (as alternative therapy), but will work as part of a larger, holistic treatment regimen. The same way one medication intervention is also unlikely to work for the difficult cases, one complementary therapy is unlikely to work. Holistic - complementary - is key.
.::.
In case you haven't noticed from my increased posting, I am already starting to feel better. My head pain hasn't necessarily changed much, though I have had a few low-pain days where I had none before. I do have more energy. Not a huge amount, but enough that I've noticed and it makes a difference. I feel like my body is absorbing the new supplements better than the ones I took before, which is good, because I'm swallowing upward of 20 pills a day. I'm having some mild side effects from both the Petadolex and CoQ10, but they seem to be dissipating (only reappearing when I've increased the dosage). I've yet to start the Nia dance, but I have a few options for classes that I will be trying the next week or so.
While I am hoping for continued success with my new treatment regimen, I also realize it's likely I will have to add another preventive medication (specifically, a prescription drug) to my regimen in the future. I'm okay with that. Hopefully, the treatment I'm trying now will mean I need less prescription medication intervention in the future.
Be well,
MJ
Sunday, August 3, 2008
overcommitted and overwhelmed
I've been having a tough time lately. I feel like I say that a lot, but it's the truth. Dealing with my Migraine is difficult enough; add in the normal life stuff and it gets to be too much.
It is all I can do right now to go to work for 40 hours a week, and keep up basic maintenance of my health: sleep, diet, drugs. Add to that, the supplementary health stuff: doctor's appointments, phone calls to my doctors, managing my mental health, support group (MMC forums). Then all the "normal" stuff: relationships with DBF and my family, errands, bills, money, social obligations, email, reading blogs.
It's enough to make anyone tear their hair out, especially when it seems like tearing my hair out may temporarily distract from the pain of my Migraine.
I haven't even added into that list the things I want to do: vacations, trips, dinners out with friends, volunteering. Anything that will get me off the couch and out of the apartment.
Over and over, my body tells me: NO. You cannot do this or you will pay.
Back in February, the president-elect of our local chapter of AIA (American Institute of Architects) called me up and offered me the nomination as Associate Director of the Board. This is a very prestigious position, rarely offered to someone as young as me. My responsibilities include helping to steer the direction of our local AIA for my one-year term, participating in monthly meetings as well as meetings on hot-button issues, attending frequent AIA events, representing the young contingent of the AIA, and coming up with a project to work on during my one-year term. I accepted this position without hesitation, as it offers me an opportunity I've been dreaming of. Uncontested, I was officially recognized as one of the new Directors in June, and my term starts in September.
But how on earth will I be able to do this?
I had hoped, prayed, expected, assumed that by September my health will be better. But it won't be. It isn't. I can barely squeeze out a 40-hour week most weeks. How can I work as much as I'm supposed to and put in all this volunteer time? I don't think that I can.
When I was in college, pursuing my degree in architecture, I pushed myself beyond all reasonable limits to finish studio projects, finish research papers, finish courses. I graduated on time (5 years) with a double-minor, a year abroad, and enough credits for 7 years' worth of schooling. I look at that, I look at all I achieved, and I look at now. I should be able to just push through this, I think to myself. Look at all those all-nighters in school. Look at the impossible things I accomplished. Why can't I just do that now?
Because I'm sick. Even though my health first spiraled out of control in college (third year), the Topamax my first neuro prescribed worked within 2 weeks. And it worked for me the whole time I took it in college.
The obvious answer here is that when I'm healthy, I can just push through and accomplish anything I need to. When I'm sick, I can't. I need to lower my expectations and stop holding myself to such impossibly high standards. But it feels like I'm giving up.
I'm really torn about this AIA thing. I desperately want the chance to make a difference in the architectural community in my city. I would love the experience of working one-on-one with some of the (local) tops in the field. I already know what project I want to work on. But is it fair to myself, to AIA, if I don't have energy to dedicate to what I need to do? Will giving up on this feel too much like giving up? So many questions, and not enough answers.
I've already streamlined a lot of my life, gotten rid of many extraneous stresses. I've gradually withdrawn other committments, postponed my licensing exam schedule so I have more time to find a good treatment plan. I've given up so much and still my body says, not enough.
The one thing I want more than anything else, is a return to some bit of normalcy in my life. Everything feels chaotic, subject to the whims of my head. Will today be a good day or bad day? Will the Migraine control everything, or can I ignore it for a while. And the underlying question: when will I break this Migraine? When will the pain stop? Will I have to live with this screwdriver in my eye socket for the rest of my life?
If I don't do this now, when will it ever happen? What if I never get better?
(Much more to write, but my head is telling me it's time to get off the computer. The story of my life.)
Be well,
MJ
It is all I can do right now to go to work for 40 hours a week, and keep up basic maintenance of my health: sleep, diet, drugs. Add to that, the supplementary health stuff: doctor's appointments, phone calls to my doctors, managing my mental health, support group (MMC forums). Then all the "normal" stuff: relationships with DBF and my family, errands, bills, money, social obligations, email, reading blogs.
It's enough to make anyone tear their hair out, especially when it seems like tearing my hair out may temporarily distract from the pain of my Migraine.
I haven't even added into that list the things I want to do: vacations, trips, dinners out with friends, volunteering. Anything that will get me off the couch and out of the apartment.
Over and over, my body tells me: NO. You cannot do this or you will pay.
Back in February, the president-elect of our local chapter of AIA (American Institute of Architects) called me up and offered me the nomination as Associate Director of the Board. This is a very prestigious position, rarely offered to someone as young as me. My responsibilities include helping to steer the direction of our local AIA for my one-year term, participating in monthly meetings as well as meetings on hot-button issues, attending frequent AIA events, representing the young contingent of the AIA, and coming up with a project to work on during my one-year term. I accepted this position without hesitation, as it offers me an opportunity I've been dreaming of. Uncontested, I was officially recognized as one of the new Directors in June, and my term starts in September.
But how on earth will I be able to do this?
I had hoped, prayed, expected, assumed that by September my health will be better. But it won't be. It isn't. I can barely squeeze out a 40-hour week most weeks. How can I work as much as I'm supposed to and put in all this volunteer time? I don't think that I can.
When I was in college, pursuing my degree in architecture, I pushed myself beyond all reasonable limits to finish studio projects, finish research papers, finish courses. I graduated on time (5 years) with a double-minor, a year abroad, and enough credits for 7 years' worth of schooling. I look at that, I look at all I achieved, and I look at now. I should be able to just push through this, I think to myself. Look at all those all-nighters in school. Look at the impossible things I accomplished. Why can't I just do that now?
Because I'm sick. Even though my health first spiraled out of control in college (third year), the Topamax my first neuro prescribed worked within 2 weeks. And it worked for me the whole time I took it in college.
The obvious answer here is that when I'm healthy, I can just push through and accomplish anything I need to. When I'm sick, I can't. I need to lower my expectations and stop holding myself to such impossibly high standards. But it feels like I'm giving up.
I'm really torn about this AIA thing. I desperately want the chance to make a difference in the architectural community in my city. I would love the experience of working one-on-one with some of the (local) tops in the field. I already know what project I want to work on. But is it fair to myself, to AIA, if I don't have energy to dedicate to what I need to do? Will giving up on this feel too much like giving up? So many questions, and not enough answers.
I've already streamlined a lot of my life, gotten rid of many extraneous stresses. I've gradually withdrawn other committments, postponed my licensing exam schedule so I have more time to find a good treatment plan. I've given up so much and still my body says, not enough.
The one thing I want more than anything else, is a return to some bit of normalcy in my life. Everything feels chaotic, subject to the whims of my head. Will today be a good day or bad day? Will the Migraine control everything, or can I ignore it for a while. And the underlying question: when will I break this Migraine? When will the pain stop? Will I have to live with this screwdriver in my eye socket for the rest of my life?
If I don't do this now, when will it ever happen? What if I never get better?
(Much more to write, but my head is telling me it's time to get off the computer. The story of my life.)
Be well,
MJ
Thursday, July 24, 2008
choices, decisions and resentment
Having such chronic migraines means, at this point in my life, I'm living with a lot of resentment.
I've talked before about the resentment I feel for my disease itself. Migraines have stolen much from me, and I resent that this disease has taken up so much space in my life. Usually I can use this resentment and anger to keep me going on my path toward getting better.
But I find other resentment in my life as well, which I don't talk about much. In the spirit of honesty and sharing with my readers, however, I'll talk about it now. And that is the resentment I feel toward other people. Before you close your browser window in disgust, please do read on.
It's not that I resent specific people. It's more that I resent (and envy) the carelessness of good health. I see it all the time, the ease with which many others live their lives, blissfully ignorant of the continual attentiveness that is chronic illness.
Most of my energy during the day goes to thinking about and coping with the little challenges I come across. I'll reference here the Spoon Theory, written by Christine Miserandino, the founder of But You Don't Look Sick?, a wonderful site for anyone with invisible illness. Anyone with chronic illness knows the very real challenge of living within your limitations, learning to conserve and use your energy (spoons) wisely. I've found that just to conserve my spoons, or to prevent spending them too quickly, in itself takes a lot of spoons.
This is something that is very difficult for people without chronic illness to understand. I don't (usually) resent them for it, but I do envy the decisions they don't have to make.
A friend of mine once described it like this:
And that is the essence of this second type of resentment. I can never "just" anything.
A perfect example: my team is having a BBQ tomorrow after work. Deciding whether or not DBF and I will go has been putting a lot of stress on me. Do I have enough spoons left from the week to do this extra activity on Friday? Will I have the energy to socialize? What will I do about food? I can't eat any of the food being served (hamburger, hot dog, veggie burger) because of my strict diet. Will I have a good time if I go? What won't I be able to do this weekend if I decide to go to the BBQ? How will this affect my work next week - will I have enough energy to make it through the full 40 hours? Questions like this have been buzzing in my head all week. There's no easy answer. I want to go, but I don't know if the cost to me will be worth it. (And I'm not even talking about the $10/person contribution to the food/beer budget.)
Most of the people on my team have not had to face these questions. If I was healthy, it would "just" be a matter of, is my schedule clear? Do I want to go? Yes + yes = go to BBQ.
.::.
Next Wednesday is my 25th birthday, the third birthday I'll have during this current bad migraine cycle. Never did I think I would be sick for so long. I'm trying not to be depressed about it. I will get to spend it with DBF, a wonderful, caring man who has been through so much with me on this confusing and difficult journey. And he's buying me ice cream cake. It's completely against my diet, but I'm not willing to skip it completely. I've had to give up so much already that I just need a slice of normalcy.
Have a good weekend, everyone.
Be well,
MJ
I've talked before about the resentment I feel for my disease itself. Migraines have stolen much from me, and I resent that this disease has taken up so much space in my life. Usually I can use this resentment and anger to keep me going on my path toward getting better.
But I find other resentment in my life as well, which I don't talk about much. In the spirit of honesty and sharing with my readers, however, I'll talk about it now. And that is the resentment I feel toward other people. Before you close your browser window in disgust, please do read on.
It's not that I resent specific people. It's more that I resent (and envy) the carelessness of good health. I see it all the time, the ease with which many others live their lives, blissfully ignorant of the continual attentiveness that is chronic illness.
Most of my energy during the day goes to thinking about and coping with the little challenges I come across. I'll reference here the Spoon Theory, written by Christine Miserandino, the founder of But You Don't Look Sick?, a wonderful site for anyone with invisible illness. Anyone with chronic illness knows the very real challenge of living within your limitations, learning to conserve and use your energy (spoons) wisely. I've found that just to conserve my spoons, or to prevent spending them too quickly, in itself takes a lot of spoons.
This is something that is very difficult for people without chronic illness to understand. I don't (usually) resent them for it, but I do envy the decisions they don't have to make.
A friend of mine once described it like this:
On choice:
Most people simply make their choices and leave the momentous decisions for things like buying a house. It sounds to me like the difference is that simple choices become decisions for you. So in that sense you don't get choices. You're forced to make decisions, and the weight of each decision carries with it a stress load quite unlike that of mere choices. And since other folks don't have that load, they really aren't likely to get how the process affects every other aspect of life. "Well, why can't you just...?" You can never "just..." anything.
And that is the essence of this second type of resentment. I can never "just" anything.
A perfect example: my team is having a BBQ tomorrow after work. Deciding whether or not DBF and I will go has been putting a lot of stress on me. Do I have enough spoons left from the week to do this extra activity on Friday? Will I have the energy to socialize? What will I do about food? I can't eat any of the food being served (hamburger, hot dog, veggie burger) because of my strict diet. Will I have a good time if I go? What won't I be able to do this weekend if I decide to go to the BBQ? How will this affect my work next week - will I have enough energy to make it through the full 40 hours? Questions like this have been buzzing in my head all week. There's no easy answer. I want to go, but I don't know if the cost to me will be worth it. (And I'm not even talking about the $10/person contribution to the food/beer budget.)
Most of the people on my team have not had to face these questions. If I was healthy, it would "just" be a matter of, is my schedule clear? Do I want to go? Yes + yes = go to BBQ.
.::.
Next Wednesday is my 25th birthday, the third birthday I'll have during this current bad migraine cycle. Never did I think I would be sick for so long. I'm trying not to be depressed about it. I will get to spend it with DBF, a wonderful, caring man who has been through so much with me on this confusing and difficult journey. And he's buying me ice cream cake. It's completely against my diet, but I'm not willing to skip it completely. I've had to give up so much already that I just need a slice of normalcy.
Have a good weekend, everyone.
Be well,
MJ
Monday, July 14, 2008
July's headache carnival is posted!
The July Headache Blog Carnival - How Spirituality Helps Us Cope with Migraine Disease - has been posted over at Diana Lee's Somebody Heal Me. Yours truly has submitted an entry, along with many other worthwhile entries I'm still working through.
Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month's carnival for a collection of informative entries on how spirituality helps us cope with migraines and headaches.
Be well,
MJ
Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month's carnival for a collection of informative entries on how spirituality helps us cope with migraines and headaches.
Be well,
MJ
Friday, July 11, 2008
on migraines and a path to harmony
I did not originally plan to write a post about spirituality and migraines, as my faith is erratic at best. I'll admit to you now that after reading fellow blogger Megan Oltman's entry on the subject (God Grant Me the Serenity to Accept Migraines I Cannot Change), I felt moved to write my own thoughts. (Thank you, Megs.)
I consider myself agnostic. I was raised Catholic in my family of five, though as time passed, we five Catholics became five different faiths. My father has become more Catholic as he's gotten older. He and I aren't on the best of terms, and perhaps that contributed to my ultimate rejection of Catholicism. (That isn't the subject of my post, however, so I won't detail it here.) My mother is atheist, though she often refers to the power of the "cosmos". My sister converted to Judaism; my brother is "spiritualist other". And then there's me.
My spirituality is best explained as a search for harmony within myself, and with the world around me. I live my life honestly, trying to be true to myself and to those around me. I've been drawn to yoga and now tai chi as an extension of this search for harmony, as they serve as wonderful stress relievers, as well as a way to listen to my body.
Listening to my body. Hmm. Turns out that's key to living well with migraine disease.
Like many others, I finally crossed the line from Catholic to agnostic in college. That is also the time I discovered how important it is for me to listen to my body. At times, I could (and did) override its needs. But college is also when I started yoga, and having that hour-long class each week - even though I didn't always stick with it - gave me an opportunity to hit pause and dig within myself to listen to my needs. And it also gave me a way to reach out to my environment and listen to what was going on around me, to appreciate the simple beauty in a tree or flower.
Now that my migraines have become chronic, and a singular migraine, I've found again the importance of harmony within myself. As an attempt to ease my pain, I've begun to live a much healthier lifestyle. I keep a strict diet. I sleep regular hours. I moderate my indulgences. I do a relaxation exercise every night at bed, to reset myself and to combat my chronic insomnia. And I try to do moderate exercise every week, tai chi with a DVD when I can or even just a walk in town. (Unfortunately, all of these changes have made negligible difference on my daily pain.)
More than anything else, though, I listen to my body and try my best to create harmony and balance for myself. One of the many reasons seeking harmony is important is that it lets me feel I'm doing all I can for my body - and mind - to live healthfully. If I'm living as healthfully as I can, then I can feel confident I'm doing my part in my migraine treatment.
Studying 35 mm photography in college, a hobby and love I have continued post-graduation, taught me to look at the world differently. To find beauty in unexpected places, in the curve of a path in a garden or the grit of a city. I've learned since then to find the beauty of harmony within myself, which has been an essential coping tool living with migraines.
Perhaps my flavor of spirituality is unconventional, or even offensive or silly to some. Perhaps some will see this as an opportunity to convert me; please understand I am not interested in that. I do think that the basic idea of harmony is one that many of us can embrace, especially in the context of chronic illness.
So, on the days of severe pain, when I rage at the unfairness of it, I try to slow down, breathe, and delve deeper into that part of myself that is separate from the pain. It won't make the pain go away, or easier to bear, but it does help me find a spot of peace in an otherwise turbulent world.
Be well,
MJ
I consider myself agnostic. I was raised Catholic in my family of five, though as time passed, we five Catholics became five different faiths. My father has become more Catholic as he's gotten older. He and I aren't on the best of terms, and perhaps that contributed to my ultimate rejection of Catholicism. (That isn't the subject of my post, however, so I won't detail it here.) My mother is atheist, though she often refers to the power of the "cosmos". My sister converted to Judaism; my brother is "spiritualist other". And then there's me.
My spirituality is best explained as a search for harmony within myself, and with the world around me. I live my life honestly, trying to be true to myself and to those around me. I've been drawn to yoga and now tai chi as an extension of this search for harmony, as they serve as wonderful stress relievers, as well as a way to listen to my body.
Listening to my body. Hmm. Turns out that's key to living well with migraine disease.
Like many others, I finally crossed the line from Catholic to agnostic in college. That is also the time I discovered how important it is for me to listen to my body. At times, I could (and did) override its needs. But college is also when I started yoga, and having that hour-long class each week - even though I didn't always stick with it - gave me an opportunity to hit pause and dig within myself to listen to my needs. And it also gave me a way to reach out to my environment and listen to what was going on around me, to appreciate the simple beauty in a tree or flower.
Now that my migraines have become chronic, and a singular migraine, I've found again the importance of harmony within myself. As an attempt to ease my pain, I've begun to live a much healthier lifestyle. I keep a strict diet. I sleep regular hours. I moderate my indulgences. I do a relaxation exercise every night at bed, to reset myself and to combat my chronic insomnia. And I try to do moderate exercise every week, tai chi with a DVD when I can or even just a walk in town. (Unfortunately, all of these changes have made negligible difference on my daily pain.)
More than anything else, though, I listen to my body and try my best to create harmony and balance for myself. One of the many reasons seeking harmony is important is that it lets me feel I'm doing all I can for my body - and mind - to live healthfully. If I'm living as healthfully as I can, then I can feel confident I'm doing my part in my migraine treatment.
Studying 35 mm photography in college, a hobby and love I have continued post-graduation, taught me to look at the world differently. To find beauty in unexpected places, in the curve of a path in a garden or the grit of a city. I've learned since then to find the beauty of harmony within myself, which has been an essential coping tool living with migraines.
Perhaps my flavor of spirituality is unconventional, or even offensive or silly to some. Perhaps some will see this as an opportunity to convert me; please understand I am not interested in that. I do think that the basic idea of harmony is one that many of us can embrace, especially in the context of chronic illness.
So, on the days of severe pain, when I rage at the unfairness of it, I try to slow down, breathe, and delve deeper into that part of myself that is separate from the pain. It won't make the pain go away, or easier to bear, but it does help me find a spot of peace in an otherwise turbulent world.
Be well,
MJ
Sunday, June 29, 2008
asking for help
Growing up with a mother as a therapist, I never doubted the efficacy or necessity of therapy, nor did I ever attach any sort of stigma to therapy.
Why, then, can it still be so hard to ask for help?
I've seen therapists four times in my life now. The first was over a summer while I was in college, to cope with some issues I had with my father. The second and third were during college, for much the same reason. The fourth was last summer, when I saw a counselor through my Employee Assistance Program (EAP). I had three sessions covered completely by my insurance, and needed a "boost" to get through the combination of neverending illness and the big life change of DBF moving in with me.
I have no doubt that traditional psychotherapy has helped me very much in the past. I have mild depression when my migraines are in a bad cycle, which has been particularly tenacious now that my migraines are really out of control. But I still put off calling my new EAP for a therapy referral for months.
It can be really difficult to ask for help. It's hard enough to ask DBF for help, to get me a glass of water, to make me some tea or even to come to the doctor with me. It's even harder to make a phone call to find a therapist. Is there something wrong with me, that I can't cope with this on my own?
Of course not.
Chronic illness is difficult to cope with because of its chronic nature. Chronic means, it isn't just going to go away after one treatment. It means, in my case, I will always be a migraineur. This disease is something I will always have to manage, whether with aggressive treatments and preventives, or simple relaxation techniques and acute treatment.
My particular situation has been difficult because I've had constant, daily migraine pain since sometime in November. Before that, I had daily pain from migraines or chronic daily headache. I've been in some sort of daily pain for two years now, since I first titrated off the Topamax I took all through college. Daily pain and generally feeling sick from my other migraine symptoms is enough to wear anyone down. The depression hand-in-hand with the migraines is, well, depressing.
Plus, I'm young. I'm at a time in my life when I'm establishing my career and social life. I moved to a whole new state just two years ago, where I've had to establish new ties and a new life. Balancing this with coping with chronic illness is too much for me at times.
Nothing I'm saying here I didn't know. It was still difficult for me to pick up the phone and call my EAP. But I've done it, and I feel better already. Hopefully I can get my first therapy appointment before DBF and I leave for vacation on Thursday.
Ah, yes. Vacation. DBF and I are going away for a week to our company's timeshare condo right on a lake only a few hours from here. We plan to have a relaxing week away, and since it's just the two of us, there's no pressure. The condo has a kitchen, so sticking to my restrictive diet shouldn't be too much of a problem.
So that's where I am. Therapy = good. Vacation = awesome.
Be well,
MJ
Why, then, can it still be so hard to ask for help?
I've seen therapists four times in my life now. The first was over a summer while I was in college, to cope with some issues I had with my father. The second and third were during college, for much the same reason. The fourth was last summer, when I saw a counselor through my Employee Assistance Program (EAP). I had three sessions covered completely by my insurance, and needed a "boost" to get through the combination of neverending illness and the big life change of DBF moving in with me.
I have no doubt that traditional psychotherapy has helped me very much in the past. I have mild depression when my migraines are in a bad cycle, which has been particularly tenacious now that my migraines are really out of control. But I still put off calling my new EAP for a therapy referral for months.
It can be really difficult to ask for help. It's hard enough to ask DBF for help, to get me a glass of water, to make me some tea or even to come to the doctor with me. It's even harder to make a phone call to find a therapist. Is there something wrong with me, that I can't cope with this on my own?
Of course not.
Chronic illness is difficult to cope with because of its chronic nature. Chronic means, it isn't just going to go away after one treatment. It means, in my case, I will always be a migraineur. This disease is something I will always have to manage, whether with aggressive treatments and preventives, or simple relaxation techniques and acute treatment.
My particular situation has been difficult because I've had constant, daily migraine pain since sometime in November. Before that, I had daily pain from migraines or chronic daily headache. I've been in some sort of daily pain for two years now, since I first titrated off the Topamax I took all through college. Daily pain and generally feeling sick from my other migraine symptoms is enough to wear anyone down. The depression hand-in-hand with the migraines is, well, depressing.
Plus, I'm young. I'm at a time in my life when I'm establishing my career and social life. I moved to a whole new state just two years ago, where I've had to establish new ties and a new life. Balancing this with coping with chronic illness is too much for me at times.
Nothing I'm saying here I didn't know. It was still difficult for me to pick up the phone and call my EAP. But I've done it, and I feel better already. Hopefully I can get my first therapy appointment before DBF and I leave for vacation on Thursday.
Ah, yes. Vacation. DBF and I are going away for a week to our company's timeshare condo right on a lake only a few hours from here. We plan to have a relaxing week away, and since it's just the two of us, there's no pressure. The condo has a kitchen, so sticking to my restrictive diet shouldn't be too much of a problem.
So that's where I am. Therapy = good. Vacation = awesome.
Be well,
MJ
Sunday, June 8, 2008
grieving my past life
I'm going to say it right now: I resent migraine disease, and everything it has taken away from my life.
I graduated college two years ago, a carefree, optimistic, idealistic young woman, about to embark on a promising career in architecture. The economy at that time was much better than it is now, and the job market for new intern architects was excellent. I had my pick of where to work, so I chose a firm whose mission and vision seemed to echo my own goals. I packed up and moved clear across the country, taking a chance on a new life. What better time to do it?
My first neuro, who saw me all through college while I was on Topamax the first time, suggested I try titrating off to "see how I would do". The tapering schedule he gave me meant that I was finished with the Topa before I even got to the West Coast. Fitting, I thought. A new life, no longer a slave to the little Topa pill I hated so.
An immature view, I realize now. Now I know the necessity of good preventive medication. When I was in college, I knew nothing about chronic daily headache or about migraine disease. I just knew that my head hurt all the time, and taking 50 mg of Topa every day meant my head only bothered me about twice a semester, but it also meant I couldn't consume alcohol with the same carefree attitude of my friends.
But what I realize now, what I have realized over and over again in the two years since I came off the Topa, is that that stupid pill that I hated so much is what allowed me to finish college on time, with an honors diploma and double-minor. It gave me a life I wouldn't have had otherwise. There's no guarantee, of course, that staying on the Topa would have meant it would have kept working for me - and that's what I tell myself every day. Because now Topa doesn't do anything for me other than randomly give me new side effects and make me depressed if I take too much of it. I thought at one point that it may have been working, but I no longer have that delusion.
Within a month of titrating off the Topa, the ambiguous dizziness and nausea, that I now recognize as my primary symptoms of CDH, were back. I blamed this sickness on everything: homesickness, adjusting to my new life, allergies, an ongoing fight with my father. It took until December, six months later, to schedule an appointment with my PCP. She treated me for a sinus infection; those antibiotics did nothing, of course, to actually fix my head. By February 2007 I was referred to a neurologist.
Nine months I had already given to this disease, convincing myself it had to be something else. And during that time, I was trying to establish a new life for myself. The weak social ties I had started to forge over my first summer here had already fizzled out. I just didn't feel well enough to go out and drink on weekends. I didn't have enough energy to make plans with people, or join community groups. I did a brief stint, playing clarinet with a local university band, but after a year of that, I simply didn't have the energy anymore.
From February until now has been one preventive after another, in various combinations. Topamax, nortriptyline, cyproheptadine, verapamil, gabapentin, Topamax again. Meanwhile, my CDH and frequent migraines turned into weekly migraines, then daily migraines, and now an ongoing migraine since November that's only becoming harder and harder to treat.
It's not that I resent the time I've spent trying to treat my migraines. I understand the trial-and-error nature of migraine treatment. I resent everything I've had to give up.
I no longer can go shopping or run errands for the most part. Fluorescent lights are a huge trigger for me. Not only do they aggravate my migraine, but certain tints of fluorescents - the kind most retail stores use - trigger diarrhea within 15 minutes of going into a store. Not so conducive to shopping.
I no longer go to see movies in the movie theatre. Seeing movies, especially action movies, in the theatre is both one of my favorite pastimes and biggest triggers. Seeing Pirates 3 triggered one of the first acephalgic migraines that I identified as such.
I no longer drive, except on very rare occasions when I absolutely can't avoid it. I don't feel safe on the road, since I know my concentration is impacted from this ongoing migraine.
I no longer drink. Alcohol seems to be a stackable trigger. It interacts with almost every medication I take anyway.
I no longer eat gluten, dairy, caffeine, MSG, preservatives, artificial sweeteners, high fructose corn syrup, and have severely reduced my sugar and salt intake. MSG and artificial sweeteners are confirmed migraine triggers. The rest do bad things to my digestion so I've cut them out.
I hardly ever eat out, because of my strict diet and because I hardly ever feel up to it.
I no longer do my computer-based design work. Computer screens are a migraine trigger. Working in front of a computer at work is all I can tolerate most days.
I no longer use a desktop computer at home. This doesn't sound like it would be a big deal, but my desktop is much more suited to do most design work. Since I can't do it anyway, DBF and I decided to buy a new laptop for me to use in the living room.
I no longer go to the library. This one makes me very upset. But our gorgeous library has fluorescent lighting, so I can only stop by long enough to pick up books I have on hold. No more Saturday afternoons spent reading there.
I have almost no social life to speak of. Since my migraines have gotten progressively worse as I've tried to start a new life here, it's been hard to form new social ties. DBF and I are going to make more of an effort to have people over this summer, but we'll see if that actually pans out.
But most of all, I no longer just "do" things without considering their consequences. A coworker invites me out to lunch; is there something at the restaurant I can eat? What kind of lighting does the restaurant have? I have to buy a new pair of jeans; do I order them online and risk them not fitting or do I try to buy them in a store and risk fluorescent lighting? We're out of cat food; I have to ask DBF to go buy some - I can't drive to the store and I can't go in there once I've gotten there.
There is a lot about my life that is positive. DBF, for one. A girl could not ask for a more supportive boyfriend. Without him, there is no doubt I wouldn't have been able to make it this far. I would have already had to move back to the East Coast to ask my family for help.
My job, for another. It's been a huge struggle to keep a full-time schedule with my health in such bad shape, but my job has excellent health insurance and benefits, not to mention is a great way to start my career. My firm and my boss have been pretty understanding of my situation and have given me a lot of leeway.
And of course, there's my family. My mom and sister are both migraineurs, and while their migraines have never been as severe as mine, they understand my pain.
Last but not least is my doctor. Without a good doctor I surely would have lost hope by now. I've just started seeing him, but I feel more confident he can help me than the last doc I saw.
It is just so hard to nurture hope in the face of so much failure. Five preventives I've trialed; all have failed. While there are many more to try, it takes a lot of courage to keep trying. And while I've been trying, my migraines have only gotten worse.
And more and more, I find it hard to suppress the question in the back of my mind: what if this migraine never breaks? What if I am always stuck with this pain?
Today I don't have any answers, or any insight to wrap this post up with. So I'll leave you, instead, with a quote from a book I recently finished:
Be well,
MJ
I graduated college two years ago, a carefree, optimistic, idealistic young woman, about to embark on a promising career in architecture. The economy at that time was much better than it is now, and the job market for new intern architects was excellent. I had my pick of where to work, so I chose a firm whose mission and vision seemed to echo my own goals. I packed up and moved clear across the country, taking a chance on a new life. What better time to do it?
My first neuro, who saw me all through college while I was on Topamax the first time, suggested I try titrating off to "see how I would do". The tapering schedule he gave me meant that I was finished with the Topa before I even got to the West Coast. Fitting, I thought. A new life, no longer a slave to the little Topa pill I hated so.
An immature view, I realize now. Now I know the necessity of good preventive medication. When I was in college, I knew nothing about chronic daily headache or about migraine disease. I just knew that my head hurt all the time, and taking 50 mg of Topa every day meant my head only bothered me about twice a semester, but it also meant I couldn't consume alcohol with the same carefree attitude of my friends.
But what I realize now, what I have realized over and over again in the two years since I came off the Topa, is that that stupid pill that I hated so much is what allowed me to finish college on time, with an honors diploma and double-minor. It gave me a life I wouldn't have had otherwise. There's no guarantee, of course, that staying on the Topa would have meant it would have kept working for me - and that's what I tell myself every day. Because now Topa doesn't do anything for me other than randomly give me new side effects and make me depressed if I take too much of it. I thought at one point that it may have been working, but I no longer have that delusion.
Within a month of titrating off the Topa, the ambiguous dizziness and nausea, that I now recognize as my primary symptoms of CDH, were back. I blamed this sickness on everything: homesickness, adjusting to my new life, allergies, an ongoing fight with my father. It took until December, six months later, to schedule an appointment with my PCP. She treated me for a sinus infection; those antibiotics did nothing, of course, to actually fix my head. By February 2007 I was referred to a neurologist.
Nine months I had already given to this disease, convincing myself it had to be something else. And during that time, I was trying to establish a new life for myself. The weak social ties I had started to forge over my first summer here had already fizzled out. I just didn't feel well enough to go out and drink on weekends. I didn't have enough energy to make plans with people, or join community groups. I did a brief stint, playing clarinet with a local university band, but after a year of that, I simply didn't have the energy anymore.
From February until now has been one preventive after another, in various combinations. Topamax, nortriptyline, cyproheptadine, verapamil, gabapentin, Topamax again. Meanwhile, my CDH and frequent migraines turned into weekly migraines, then daily migraines, and now an ongoing migraine since November that's only becoming harder and harder to treat.
It's not that I resent the time I've spent trying to treat my migraines. I understand the trial-and-error nature of migraine treatment. I resent everything I've had to give up.
I no longer can go shopping or run errands for the most part. Fluorescent lights are a huge trigger for me. Not only do they aggravate my migraine, but certain tints of fluorescents - the kind most retail stores use - trigger diarrhea within 15 minutes of going into a store. Not so conducive to shopping.
I no longer go to see movies in the movie theatre. Seeing movies, especially action movies, in the theatre is both one of my favorite pastimes and biggest triggers. Seeing Pirates 3 triggered one of the first acephalgic migraines that I identified as such.
I no longer drive, except on very rare occasions when I absolutely can't avoid it. I don't feel safe on the road, since I know my concentration is impacted from this ongoing migraine.
I no longer drink. Alcohol seems to be a stackable trigger. It interacts with almost every medication I take anyway.
I no longer eat gluten, dairy, caffeine, MSG, preservatives, artificial sweeteners, high fructose corn syrup, and have severely reduced my sugar and salt intake. MSG and artificial sweeteners are confirmed migraine triggers. The rest do bad things to my digestion so I've cut them out.
I hardly ever eat out, because of my strict diet and because I hardly ever feel up to it.
I no longer do my computer-based design work. Computer screens are a migraine trigger. Working in front of a computer at work is all I can tolerate most days.
I no longer use a desktop computer at home. This doesn't sound like it would be a big deal, but my desktop is much more suited to do most design work. Since I can't do it anyway, DBF and I decided to buy a new laptop for me to use in the living room.
I no longer go to the library. This one makes me very upset. But our gorgeous library has fluorescent lighting, so I can only stop by long enough to pick up books I have on hold. No more Saturday afternoons spent reading there.
I have almost no social life to speak of. Since my migraines have gotten progressively worse as I've tried to start a new life here, it's been hard to form new social ties. DBF and I are going to make more of an effort to have people over this summer, but we'll see if that actually pans out.
But most of all, I no longer just "do" things without considering their consequences. A coworker invites me out to lunch; is there something at the restaurant I can eat? What kind of lighting does the restaurant have? I have to buy a new pair of jeans; do I order them online and risk them not fitting or do I try to buy them in a store and risk fluorescent lighting? We're out of cat food; I have to ask DBF to go buy some - I can't drive to the store and I can't go in there once I've gotten there.
There is a lot about my life that is positive. DBF, for one. A girl could not ask for a more supportive boyfriend. Without him, there is no doubt I wouldn't have been able to make it this far. I would have already had to move back to the East Coast to ask my family for help.
My job, for another. It's been a huge struggle to keep a full-time schedule with my health in such bad shape, but my job has excellent health insurance and benefits, not to mention is a great way to start my career. My firm and my boss have been pretty understanding of my situation and have given me a lot of leeway.
And of course, there's my family. My mom and sister are both migraineurs, and while their migraines have never been as severe as mine, they understand my pain.
Last but not least is my doctor. Without a good doctor I surely would have lost hope by now. I've just started seeing him, but I feel more confident he can help me than the last doc I saw.
It is just so hard to nurture hope in the face of so much failure. Five preventives I've trialed; all have failed. While there are many more to try, it takes a lot of courage to keep trying. And while I've been trying, my migraines have only gotten worse.
And more and more, I find it hard to suppress the question in the back of my mind: what if this migraine never breaks? What if I am always stuck with this pain?
Today I don't have any answers, or any insight to wrap this post up with. So I'll leave you, instead, with a quote from a book I recently finished:
"What will you do, if it does not turn out how you expect?"
"I do not know. Nor shall I worry about it until it happens. I still have an action left to take; until I have exhausted it, I shall not despair." - Robin Hobb, Assassin's Quest
Be well,
MJ
Tuesday, May 27, 2008
migraineurs and CFLs: a crucial public health issue
I have posted quite a bit around the web on this subject, and even about my personal struggles with fluorescent lighting, but until today, I have not mentioned an important petition regarding migraineurs and compact fluorescent lightbulbs (commonly called CFLs) - at least, until now.
First, some background: in December 2007, the US Congress passed the Energy Independence & Security Act of 2007, a comprehensive piece of legislation designed to decrease our country's gobbling-up of energy. Buried in this was a mandate to phase out all incandescent lighting by 2012.
The idea behind this particular piece of the law is that incandescent lighting is incredibly inefficient, and more efficient forms of lighting are already available on the market. By 2012, when US consumers are no longer able to buy regular incandescent bulbs, they will have to buy more efficient forms of lighting, thus reducing our energy consumption even if no one's energy consumption habits change. In other words, if you're one of those people who leaves lights on 15 hours out of the day, by using CFLs instead of incandescents, you'll cut your energy consumption (and electric bill) rather significantly without much effort on your part.
Sounds good, right? It all is - in theory.
Here's the problem. For many migraineurs, myself included, CFLs trigger debilitating migraine attacks. CFLs also have been shown anecdotally to cause health issues for other people, including those with epilepsy and lupus. So while none of us will argue with the importance of being "green", CFLs are not a viable option for us.
Unfortunately, with currently available technology, CFLs are the easiest replacement to make. They are made to fit in traditional lamp sockets and, while more expensive than incandescents, are still in a close enough price range that most consumers will choose these over other options.
Like many other migraineurs, this legislation truly worries me. If 2012 rolls around and incandescent bulbs become unavailable, I will not have many viable options. I can live my life in the dark, I can live by candlelight, or I can invest in significantly more expensive technologies, like light-emitting diodes (LEDs), that are also not ideal for typical household use.
Here's the thing: with the way the law is currently written, none of this is likely to change in the next four years. And that's why the Migraine Disease & Headache Bloggers Association has stepped up and written a petition to Congress.
Instead of outlawing incandescent lighting completely, we are asking Congress to amend their legislation, focusing on energy efficiency standards that all lighting would be required to meet. These standards would allow lighting manufacturers to continue to make incandescent lighting, but require them to find ways to make them more efficient. This would also allow CFLs to stay on the market, as well as encourage other new technologies to develop. By focusing on energy standards rather than specific technologies, the amended law would no longer be a knee-jerk reaction to the green craze. Instead, it would be a future-thinking law that will allow flexibility of technology, while still meeting the intent of the original law.
Migraineurs are not opposed to the use of CFLs - that is, unless we've determined this type of lighting is a trigger and we're being forced to use it in our own home. Many of us are trying to find ways to shrink our carbon footprints. We should not be forced to suffer because of a well-intentioned piece of legislation passed by Congress. This is a national health issue, affecting many of the 36 million American migraineurs. Surely we should have some choice about our home lighting? Surely we should not be completely eliminated from public life because of a lack of knowledge about the health issues associated with CFLs?
I ask all of you to take a minute and sign our petition, which you can find here: protect migraineurs from CFLs. Please pass this along to all those in your life. It's likely some of them are migraineurs, and they may not even know they're affected by CFLs.
For more information about energy efficiency in your own home, please see the US Department of Energy's great website, Energy Efficiency and Renewable Energy. In particular, Types of Lighting is an excellent basic overview.
For further reading, please see these posts by my fellow migraine bloggers:
-MJ
First, some background: in December 2007, the US Congress passed the Energy Independence & Security Act of 2007, a comprehensive piece of legislation designed to decrease our country's gobbling-up of energy. Buried in this was a mandate to phase out all incandescent lighting by 2012.
The idea behind this particular piece of the law is that incandescent lighting is incredibly inefficient, and more efficient forms of lighting are already available on the market. By 2012, when US consumers are no longer able to buy regular incandescent bulbs, they will have to buy more efficient forms of lighting, thus reducing our energy consumption even if no one's energy consumption habits change. In other words, if you're one of those people who leaves lights on 15 hours out of the day, by using CFLs instead of incandescents, you'll cut your energy consumption (and electric bill) rather significantly without much effort on your part.
Sounds good, right? It all is - in theory.
Here's the problem. For many migraineurs, myself included, CFLs trigger debilitating migraine attacks. CFLs also have been shown anecdotally to cause health issues for other people, including those with epilepsy and lupus. So while none of us will argue with the importance of being "green", CFLs are not a viable option for us.
Unfortunately, with currently available technology, CFLs are the easiest replacement to make. They are made to fit in traditional lamp sockets and, while more expensive than incandescents, are still in a close enough price range that most consumers will choose these over other options.
Like many other migraineurs, this legislation truly worries me. If 2012 rolls around and incandescent bulbs become unavailable, I will not have many viable options. I can live my life in the dark, I can live by candlelight, or I can invest in significantly more expensive technologies, like light-emitting diodes (LEDs), that are also not ideal for typical household use.
Here's the thing: with the way the law is currently written, none of this is likely to change in the next four years. And that's why the Migraine Disease & Headache Bloggers Association has stepped up and written a petition to Congress.
Instead of outlawing incandescent lighting completely, we are asking Congress to amend their legislation, focusing on energy efficiency standards that all lighting would be required to meet. These standards would allow lighting manufacturers to continue to make incandescent lighting, but require them to find ways to make them more efficient. This would also allow CFLs to stay on the market, as well as encourage other new technologies to develop. By focusing on energy standards rather than specific technologies, the amended law would no longer be a knee-jerk reaction to the green craze. Instead, it would be a future-thinking law that will allow flexibility of technology, while still meeting the intent of the original law.
Migraineurs are not opposed to the use of CFLs - that is, unless we've determined this type of lighting is a trigger and we're being forced to use it in our own home. Many of us are trying to find ways to shrink our carbon footprints. We should not be forced to suffer because of a well-intentioned piece of legislation passed by Congress. This is a national health issue, affecting many of the 36 million American migraineurs. Surely we should have some choice about our home lighting? Surely we should not be completely eliminated from public life because of a lack of knowledge about the health issues associated with CFLs?
I ask all of you to take a minute and sign our petition, which you can find here: protect migraineurs from CFLs. Please pass this along to all those in your life. It's likely some of them are migraineurs, and they may not even know they're affected by CFLs.
For more information about energy efficiency in your own home, please see the US Department of Energy's great website, Energy Efficiency and Renewable Energy. In particular, Types of Lighting is an excellent basic overview.
For further reading, please see these posts by my fellow migraine bloggers:
- Teri Robert, Lighting, CFLs and Migraine Triggers
- Megan Oltman, Protect Migraineurs from Compact Fluorescents
- Megan Oltman, Alternatives to Compact Fluorescents - for Migraineurs and the Rest of You!
- Diana Lee, Please Sign CFL Petition to Protect Migraineurs
- Help My Hurt, Saving Energy May Be Causing Some Migraines
- RainGem, Fluorescent Lights as Migraine Triggers - the Petition
- My Life with Migraine, Protect Migraineurs from Compact Fluorescent Light Bulbs
- Pink Pearl Girl, Migraine and the Energy Independence & Security Act of 2007
- The Migraine Girl, Urgent: a Petition
-MJ
Thursday, May 22, 2008
shred of normalcy
If I've been a bit absent from the blogging world, it's because I was traveling last week. I spent most of last week at an architecture convention in Boston, followed by a weekend in Virginia for a friends' wedding. Interspersed in the trip was time with my family, DBF's family and friends from college.
In other words, a very busy trip, and one many migraineurs would dread.
I had been looking forward to this trip for months, because the conference promised to be a good one and because I would get to see many family and friends I don't spend much time with. (The price of picking up and moving clear across the country.) But, as the trip loomed closer, I could see the potential triggers stacking, and no easy way to avoid them: the flights, including a red-eye to get to Boston; irregular sleeping and eating habits; fluorescent lighting; long, full days with much more activity than I'm used to; different weather; brighter sunlight than we have in the Pacific Northwest; more flying; long driving trips. The list went on and on. Add to that the stress over trying to keep my strict gluten-free/dairy-free diet and I just wanted to cancel the trip.
But, because of personal and professional obligations, I packed up my bags, kissed DBF goodbye (with promises to see him in Virginia), and off I went. And I survived the trip, though I'm not sure about the cost to my body.
The conference was wonderful, and I made some very valuable professional contacts while I was there. Not to mention, I learned a lot. The days were long, though, very long, and by the end of it I was exhausted. The first two days I went on two walking tours, which I probably would have bagged if I hadn't paid for them upfront. (No refunds.) These were followed by many seminars in a very cold convention center under fluorescent lighting. A recipe for disaster. I skipped about half of the sessions I intended to go to, but I also managed to skip the guilt. Even when I had to cancel a dinner with the principals of my firm because I felt so sick.
Going to the wedding I thought would do me in, but taking it very easy on myself all week meant I still had some energy to coast through the weekend. It was a huge relief to get home nonetheless, away from the expectations of friends and family I don't get to see as often as I would like. My family "gets it" better than I could hope for, since both my mom and sister are migraineurs. DBF's parents try to be understanding, and I never feel pressured by them. But it becomes hard to say no to friends I haven't seen in years, especially when they don't understand the "headaches" I mysteriously suffer from.
A few essential survival skills I learned on this trip:
I'd love for there to be a day when I can travel again like I used to, a higher energy kind of travel that doesn't require so much rest and recuperation. But for now, I'll take this: a shred of normalcy in my storm of chronic migraine.
-MJ
In other words, a very busy trip, and one many migraineurs would dread.
I had been looking forward to this trip for months, because the conference promised to be a good one and because I would get to see many family and friends I don't spend much time with. (The price of picking up and moving clear across the country.) But, as the trip loomed closer, I could see the potential triggers stacking, and no easy way to avoid them: the flights, including a red-eye to get to Boston; irregular sleeping and eating habits; fluorescent lighting; long, full days with much more activity than I'm used to; different weather; brighter sunlight than we have in the Pacific Northwest; more flying; long driving trips. The list went on and on. Add to that the stress over trying to keep my strict gluten-free/dairy-free diet and I just wanted to cancel the trip.
But, because of personal and professional obligations, I packed up my bags, kissed DBF goodbye (with promises to see him in Virginia), and off I went. And I survived the trip, though I'm not sure about the cost to my body.
The conference was wonderful, and I made some very valuable professional contacts while I was there. Not to mention, I learned a lot. The days were long, though, very long, and by the end of it I was exhausted. The first two days I went on two walking tours, which I probably would have bagged if I hadn't paid for them upfront. (No refunds.) These were followed by many seminars in a very cold convention center under fluorescent lighting. A recipe for disaster. I skipped about half of the sessions I intended to go to, but I also managed to skip the guilt. Even when I had to cancel a dinner with the principals of my firm because I felt so sick.
Going to the wedding I thought would do me in, but taking it very easy on myself all week meant I still had some energy to coast through the weekend. It was a huge relief to get home nonetheless, away from the expectations of friends and family I don't get to see as often as I would like. My family "gets it" better than I could hope for, since both my mom and sister are migraineurs. DBF's parents try to be understanding, and I never feel pressured by them. But it becomes hard to say no to friends I haven't seen in years, especially when they don't understand the "headaches" I mysteriously suffer from.
A few essential survival skills I learned on this trip:
- Plan about half as much activity as I think I can do. Reasonably, that's all I will have energy to do. The rest of the time I will need to rest and recuperate, to make sure I have energy to make it through the whole trip.
- Bring plenty of migraine-friendly snacks for both the plane/car travel, and just to have in the hotel room. Always carry some in my purse to help avoid the unpredictable meal times that seem to be a requirement of traveling.
- Comfort measures! I packed my robe and slippers, as well as a pillow and stuffed animal from home. Having these in my hotel room helped me to feel like I was still at home.
- Ask for what you need. My hotel had recently "gone green" and switched to compact fluorescent light bulbs (CFLs), which are a migraine trigger for me. My sister very politely talked to the front desk for me and explained the problem, and within a half hour they replaced all the bulbs in my room with less-problematic incandescents. There's no need to quietly suffer. Plus, explaining this problem has the double benefit of educating the hotel staff, so other migraineurs who may stay in that hotel will run into less confusion from the hotel staff.
- Balance aggravation vs cost. I bought some souvenirs at the conference and was worried about trying to get them home. My checked luggage was already overweight, and I didn't want to make my carry-on too heavy to deal with. I decided it was worth the cost to ship my souvenirs home to myself, and pay a little extra for overweight luggage so my carry-on was manageable. While I may have had to pay more money to do this, I saved myself a lot of frustration and energy I would have wasted on luggage.
- Most importantly, leave the guilt at home. I had to cancel a lot of plans at the last minute because of how I was feeling, or in the interest of not feeling worse later. I reminded myself that migraine is a real disease that requires management, and feeling guilty because I can't do as much as others will serve no purpose other than making me feel worse. So I dumped the guilt and focused on making myself feel better so I could enjoy my trip.
I'd love for there to be a day when I can travel again like I used to, a higher energy kind of travel that doesn't require so much rest and recuperation. But for now, I'll take this: a shred of normalcy in my storm of chronic migraine.
-MJ
Tuesday, May 6, 2008
eye of the storm
Tonight marks one week since I reduced my dosage of Topamax to 50 mg from 75 mg. This past weekend I actually felt decent. Not "good", really, I never feel "good". But decent. I can live with that.
My moods have leveled out. The depression has lifted. It's not gone, and I don't expect it to be until my migraines are under better control. But I can live with this more mild depression, rather than the severe and suffocating version I had been feeling more often up until last week. Luckily the weird anxiety I had settled down after a few days. Some of the other side effects from the Topa are still sticking around, but I don't expect them to disappear magically.
The other good news is that my head pain has been noticeably better the past few days. Aside of yesterday, when it reached a 7 out of 10 - which was directly attributable to the hours I spent under buzzy fluorescent lights at two doctors' offices - my pain has largely stayed in the 4-6 range. It's normal for me to wake up with pain around a 4, which then progresses throughout the day, maxing out around a 6-7 and topping out at 8 or more about once a week or so. Last month I had a whole string of pain days that hit an 8 and I was miserable. Compared to that, I'm almost carefree.
I have to be very careful not to overdo it though, or I'll just end up doing my head in with some worse pain.
I'm wondering if the Topa might be kicking in a little bit. I don't want to jinx myself and end up with bad pain again, but I'm going to pursue this line of thinking for a minute. I've been taking the Topa since the end of February. I was on the 75 mg dose for six weeks before I had to cut it back. It can take up to three months for a preventive to start working. At this point, I don't think it's possible for a medication, any medication, to break this long migraine cycle I've been in since November. I do believe I need much more aggressive treatment, whether in the form of IVs or steroids or something else, before my pain will actually stop. But that doesn't mean the Topa might not reduce my pain some in the meantime. Hey, I'll take it.
I still plan to have a discussion with my new doctor about the Topa, and whether I should stay on it or not. The side effects I had at the higher dosages were really awful. Hopefully when I see the doc on May 21, I'll have a better idea of if my body can tolerate the lower dose of Topa and if it is doing anything for me.
It's also entirely possible this is just one of those "normal" cycles this migraine seems to go through, and in another week or so I'll be in absolute misery, curled up on my couch, whimpering. Hey, it's happened before. I'll hope for the best while I prepare for the worst - that's all we migraineurs can do sometimes.
Whatever the reason, I'm trying to enjoy this relative reduction in my pain without questioning the why. I've learned that the best thing I can do is keep good daily records of how I'm feeling, and do the interpretation with my doctor's help later.
For now, though, it's nice not to have an icepack tied to my head. I may have to get one out in another hour or so, but that's an hour later than I did last week.
My moods have leveled out. The depression has lifted. It's not gone, and I don't expect it to be until my migraines are under better control. But I can live with this more mild depression, rather than the severe and suffocating version I had been feeling more often up until last week. Luckily the weird anxiety I had settled down after a few days. Some of the other side effects from the Topa are still sticking around, but I don't expect them to disappear magically.
The other good news is that my head pain has been noticeably better the past few days. Aside of yesterday, when it reached a 7 out of 10 - which was directly attributable to the hours I spent under buzzy fluorescent lights at two doctors' offices - my pain has largely stayed in the 4-6 range. It's normal for me to wake up with pain around a 4, which then progresses throughout the day, maxing out around a 6-7 and topping out at 8 or more about once a week or so. Last month I had a whole string of pain days that hit an 8 and I was miserable. Compared to that, I'm almost carefree.
I have to be very careful not to overdo it though, or I'll just end up doing my head in with some worse pain.
I'm wondering if the Topa might be kicking in a little bit. I don't want to jinx myself and end up with bad pain again, but I'm going to pursue this line of thinking for a minute. I've been taking the Topa since the end of February. I was on the 75 mg dose for six weeks before I had to cut it back. It can take up to three months for a preventive to start working. At this point, I don't think it's possible for a medication, any medication, to break this long migraine cycle I've been in since November. I do believe I need much more aggressive treatment, whether in the form of IVs or steroids or something else, before my pain will actually stop. But that doesn't mean the Topa might not reduce my pain some in the meantime. Hey, I'll take it.
I still plan to have a discussion with my new doctor about the Topa, and whether I should stay on it or not. The side effects I had at the higher dosages were really awful. Hopefully when I see the doc on May 21, I'll have a better idea of if my body can tolerate the lower dose of Topa and if it is doing anything for me.
It's also entirely possible this is just one of those "normal" cycles this migraine seems to go through, and in another week or so I'll be in absolute misery, curled up on my couch, whimpering. Hey, it's happened before. I'll hope for the best while I prepare for the worst - that's all we migraineurs can do sometimes.
Whatever the reason, I'm trying to enjoy this relative reduction in my pain without questioning the why. I've learned that the best thing I can do is keep good daily records of how I'm feeling, and do the interpretation with my doctor's help later.
For now, though, it's nice not to have an icepack tied to my head. I may have to get one out in another hour or so, but that's an hour later than I did last week.
Friday, April 25, 2008
photophobia and fluorescent lighting: a quest
Like many other migraineurs, I suffer from photophobia, a sensitivity to light. My photophobia is constant, and gets worse as my pain gets worse, but since I've been living with this particular migraine since November, the photophobia has been particularly stubborn as well.
Also like many other migraineurs, I cannot tolerate fluorescent lighting. Part of the issue is the color of the light itself: the fluorescents at my office are tinted a warmer yellow, which I can live with, as opposed to the horrendous (and cheaper) blue-white found in many stores. These fluorescents not only immediately worsen my migraine pain, dizziness and nausea, but also have an unpleasant tendency of sending me running to the nearest bathroom with soupey poopies within 15 minutes. If my office had this blue-white lighting, I would have had to leave my job already.
Unfortunately, the tint is not the entire story. The imperceptible flicker of fluorescents is enough to drive the sensitive migraine brain wacko. This makes it a particularly difficult problem to deal with. Many of us cope by wearing sunglasses, or tinted glasses, but this is not always a viable option for me since I work in a field where I regularly meet with clients and consultants, so wearing sunglasses to these meetings would not be appropriate. It also doesn't do anything for the flicker, really, just gives our eyes a break from the brightness of the lighting.
What is a migraineur to do?
Fortunately, the woman in charge of office services at my office is also a migraineur, so she was able to help me get the fixtures over my cube turned off. This makes it possible for me to get through a workday without being miserable. It does nothing, however, for the fluorescents in our conference rooms or in the rest of our office.
Some months ago, I came across mention of the use of Nike Maxsight tinted contact lenses as a way to ease light sensitivity in Dr Alexander Mauskop's Headache NewsBlog. This reference simmered in the back of my head for a while, and I have since come across other mentions of the use of contacts to address light sensitivity. The Migraine Girl asked in an entry about MigraLens and Irlen contacts specifically for combating fluorescent lighting sensitivity.
After much Googling, I finally scheduled an appointment with my ophthalmologist when I discovered that his office carries the Nike lenses. I'll also note here that Nike discontinued these lenses a few months ago, but I figured I could at least schedule the appointment and talk with the eye doc and see if he had any suggestions. Who knows, the Nike lenses could be my saviors, and I would just order them in bulk from an internet supplier.
I went in for my appointment two and a half weeks ago with my eye doc, and explained my problem. He thought for a few minutes, then came out with a surprising statement - he had a few ideas, and he wasn't sure what would work but he was willing to work with me until we found a reasonable solution. He specializes in contact lenses, so I felt somewhat confident in his statement. He had some trial Nike lenses at his other office that he would look through to see if he could find any for me, and he would also dig up some other trial tinted lenses - just regular cosmetic FreshLook lenses with a slight tint - for me to try.
By the end of that week, he had the Nike lenses ready for me. He scheduled a two-week follow-up appointment with me, to give me time to try out the lenses.
First reaction: they make me look like some sort of demonic beastie (migraine beastie, maybe?). The ones I tried are the grey-green tint, which actually wash my eyes out to black. A very strange effect, but one I would put up with if they solved the fluorescent lighting problem. I would even put up with the startled coworkers.
Unfortunately, I only made it a few days with the lenses. I discovered my brain started to freak out after wearing them for about six hours. The tinting in them was too strange a color for all-day wear. (Imagine the color of bug lights - that's what color these lenses made everything.) This tint was especially pronounced on cloudy days, and we have a lot of those here in the Pacific Northwest. I also had a run of several severe migraine days, which may or may not be related to the lenses. They did help out a lot with sunlight though, when worn under my regular sunglasses, so it wasn't a total loss.
I had my follow-up appointment with my eye doc today. He offered me another, much more expensive option, which is prosthetic lenses. With these custom lenses, he can control exactly how much light is allowed into my eye, and I will not see any sort of a tint. He took some measurements of my eyes for these lenses and told me my pupils seem to dilate more than they should (not surprising - they also dilate unevenly depending on the severity of my migraine).
I feel these are a better option for me than the Nike lenses, but custom = expensive. He's taking a look into pricing for me and his office will call before they order them. The price tag should come in somewhere under $1000 - I may be able to get some medical insurance coverage for this, but it's not likely. (My vision insurance is basically only enough to cover my annual exam.)
I will be seeing my new headache specialist in just under a month, and I plan to pick his brain about this, at least because I want to see if he'll write a letter of medical necessity. He may have some other ideas too, who knows. The nice thing about these lenses is that they will reduce the amount of light entering my eyes in the periphery, which I think may help quite a bit with the fluorescent lighting issue. It won't solve it - really, nothing short of avoidance or removal will - but it's something.
Before I make this much of an investment, I will be doing some thinking about this. A part of me had hoped that my migraines would resolve somewhat quickly so I wouldn't have to deal with the photophobia/fluorescent lighting issue. But that is not likely to happen, and I need to find some ways to make my life more livable in the meantime.
Crazy idea? Maybe. As a side note, more blog space will be devoted to the fluorescent lighting issue in the future, on the advocacy side of things. Stay tuned for updates.
Also like many other migraineurs, I cannot tolerate fluorescent lighting. Part of the issue is the color of the light itself: the fluorescents at my office are tinted a warmer yellow, which I can live with, as opposed to the horrendous (and cheaper) blue-white found in many stores. These fluorescents not only immediately worsen my migraine pain, dizziness and nausea, but also have an unpleasant tendency of sending me running to the nearest bathroom with soupey poopies within 15 minutes. If my office had this blue-white lighting, I would have had to leave my job already.
Unfortunately, the tint is not the entire story. The imperceptible flicker of fluorescents is enough to drive the sensitive migraine brain wacko. This makes it a particularly difficult problem to deal with. Many of us cope by wearing sunglasses, or tinted glasses, but this is not always a viable option for me since I work in a field where I regularly meet with clients and consultants, so wearing sunglasses to these meetings would not be appropriate. It also doesn't do anything for the flicker, really, just gives our eyes a break from the brightness of the lighting.
What is a migraineur to do?
Fortunately, the woman in charge of office services at my office is also a migraineur, so she was able to help me get the fixtures over my cube turned off. This makes it possible for me to get through a workday without being miserable. It does nothing, however, for the fluorescents in our conference rooms or in the rest of our office.
Some months ago, I came across mention of the use of Nike Maxsight tinted contact lenses as a way to ease light sensitivity in Dr Alexander Mauskop's Headache NewsBlog. This reference simmered in the back of my head for a while, and I have since come across other mentions of the use of contacts to address light sensitivity. The Migraine Girl asked in an entry about MigraLens and Irlen contacts specifically for combating fluorescent lighting sensitivity.
After much Googling, I finally scheduled an appointment with my ophthalmologist when I discovered that his office carries the Nike lenses. I'll also note here that Nike discontinued these lenses a few months ago, but I figured I could at least schedule the appointment and talk with the eye doc and see if he had any suggestions. Who knows, the Nike lenses could be my saviors, and I would just order them in bulk from an internet supplier.
I went in for my appointment two and a half weeks ago with my eye doc, and explained my problem. He thought for a few minutes, then came out with a surprising statement - he had a few ideas, and he wasn't sure what would work but he was willing to work with me until we found a reasonable solution. He specializes in contact lenses, so I felt somewhat confident in his statement. He had some trial Nike lenses at his other office that he would look through to see if he could find any for me, and he would also dig up some other trial tinted lenses - just regular cosmetic FreshLook lenses with a slight tint - for me to try.
By the end of that week, he had the Nike lenses ready for me. He scheduled a two-week follow-up appointment with me, to give me time to try out the lenses.
First reaction: they make me look like some sort of demonic beastie (migraine beastie, maybe?). The ones I tried are the grey-green tint, which actually wash my eyes out to black. A very strange effect, but one I would put up with if they solved the fluorescent lighting problem. I would even put up with the startled coworkers.
Unfortunately, I only made it a few days with the lenses. I discovered my brain started to freak out after wearing them for about six hours. The tinting in them was too strange a color for all-day wear. (Imagine the color of bug lights - that's what color these lenses made everything.) This tint was especially pronounced on cloudy days, and we have a lot of those here in the Pacific Northwest. I also had a run of several severe migraine days, which may or may not be related to the lenses. They did help out a lot with sunlight though, when worn under my regular sunglasses, so it wasn't a total loss.
I had my follow-up appointment with my eye doc today. He offered me another, much more expensive option, which is prosthetic lenses. With these custom lenses, he can control exactly how much light is allowed into my eye, and I will not see any sort of a tint. He took some measurements of my eyes for these lenses and told me my pupils seem to dilate more than they should (not surprising - they also dilate unevenly depending on the severity of my migraine).
I feel these are a better option for me than the Nike lenses, but custom = expensive. He's taking a look into pricing for me and his office will call before they order them. The price tag should come in somewhere under $1000 - I may be able to get some medical insurance coverage for this, but it's not likely. (My vision insurance is basically only enough to cover my annual exam.)
I will be seeing my new headache specialist in just under a month, and I plan to pick his brain about this, at least because I want to see if he'll write a letter of medical necessity. He may have some other ideas too, who knows. The nice thing about these lenses is that they will reduce the amount of light entering my eyes in the periphery, which I think may help quite a bit with the fluorescent lighting issue. It won't solve it - really, nothing short of avoidance or removal will - but it's something.
Before I make this much of an investment, I will be doing some thinking about this. A part of me had hoped that my migraines would resolve somewhat quickly so I wouldn't have to deal with the photophobia/fluorescent lighting issue. But that is not likely to happen, and I need to find some ways to make my life more livable in the meantime.
Crazy idea? Maybe. As a side note, more blog space will be devoted to the fluorescent lighting issue in the future, on the advocacy side of things. Stay tuned for updates.
Saturday, April 19, 2008
coming out of the (migraine) closet: a borrowed subject
Fellow migraineur and blogger, Megan Oltman, wrote an excellent post yesterday (as always) about coming out of the migraine closet. She makes the analogy of living publicly with this disease, of coming out with it like coming out with sexual orientation, and the need for education as a path to acceptance. She's right - the only way we migraineurs will ever get the compassion we deserve is through understanding, which will only come after education. And it's up to us.
Megan is doing an outstanding job, I think, of living out in the open with migraine disease. She doesn't hide her migraines, doesn't apologize for them, and does her best to ask for reasonable accommodations as she needs them. She educates those around her without preaching. I'm sure like the rest of us she still encounters those who just don't "get it", but that's to be expected. I give her a lot of credit for living her disease so publicly, because I'm not there yet.
I'm still in the migraine closet, so to speak.
For the most part, I don't discuss my disease. My boss and team at work know that I get migraines, but that's about the extent of it. I did print out some information about migraines from MMC and AHDA - including "What is a Migraine?", Understanding Migraineurs letter and the AHDA flier - to pin up outside my cubicle. Within the same week, I faced some incredibly insensitive comments from one of my coworkers, whom I promptly named "Mr Insensitive".
In college, I lost a lot of friends because of my migraines. At that time, I didn't even understand what I was going through, so I couldn't educate them. I thought I was just having sinus headaches. Along with the migraines came a bout with depression, and the friends I had were unwilling/unable to be a good support system at the time. Fair weather friends indeed.
I don't mean to make this into a sob story, but being burned in the past has made it difficult for me to be upfront with others in my life about the severity of my migraines, and I know I'm not alone in this. It's a subject we discuss every day on the MMC boards. Who do we tell? How do we tell them? How do we deal with those in our lives who don't get it? There is no one size fits all answer, that's for sure.
I've been working to educate those in my life who are close to me. DBF is reading Teri Robert's excellent book, Living Well With Migraine Disease and Headaches. I feed tidbits of information and articles to my mom. I sent the link to this blog to my sister. (Both my mom and sister, like most of the women on my mother's side of the family, are migraineurs.) Cliche though it may be, knowledge is indeed power.
So I may not be living openly and comfortably with my disease, but I'm getting there. One foot is poking out of the closet, at least.
-MJ
Thanks to Megs for a great topic!
Megan is doing an outstanding job, I think, of living out in the open with migraine disease. She doesn't hide her migraines, doesn't apologize for them, and does her best to ask for reasonable accommodations as she needs them. She educates those around her without preaching. I'm sure like the rest of us she still encounters those who just don't "get it", but that's to be expected. I give her a lot of credit for living her disease so publicly, because I'm not there yet.
I'm still in the migraine closet, so to speak.
For the most part, I don't discuss my disease. My boss and team at work know that I get migraines, but that's about the extent of it. I did print out some information about migraines from MMC and AHDA - including "What is a Migraine?", Understanding Migraineurs letter and the AHDA flier - to pin up outside my cubicle. Within the same week, I faced some incredibly insensitive comments from one of my coworkers, whom I promptly named "Mr Insensitive".
In college, I lost a lot of friends because of my migraines. At that time, I didn't even understand what I was going through, so I couldn't educate them. I thought I was just having sinus headaches. Along with the migraines came a bout with depression, and the friends I had were unwilling/unable to be a good support system at the time. Fair weather friends indeed.
I don't mean to make this into a sob story, but being burned in the past has made it difficult for me to be upfront with others in my life about the severity of my migraines, and I know I'm not alone in this. It's a subject we discuss every day on the MMC boards. Who do we tell? How do we tell them? How do we deal with those in our lives who don't get it? There is no one size fits all answer, that's for sure.
I've been working to educate those in my life who are close to me. DBF is reading Teri Robert's excellent book, Living Well With Migraine Disease and Headaches. I feed tidbits of information and articles to my mom. I sent the link to this blog to my sister. (Both my mom and sister, like most of the women on my mother's side of the family, are migraineurs.) Cliche though it may be, knowledge is indeed power.
So I may not be living openly and comfortably with my disease, but I'm getting there. One foot is poking out of the closet, at least.
-MJ
Thanks to Megs for a great topic!
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