Thursday, June 28, 2012

Learning the hard way

Migraine Awareness Month: "I learned the hard way..."
I chose a substitute prompt for today's original blogging challenge prompt. So the prompt I'll use today is: We learn a great many things the hard way, through experiences that are often difficult and unpleasant. Of all the things you're learned the hard way, what sticks in your mind the most?

I learned the hard way that I am more than a series of accomplishments. That sounds cheesy, but for me, it was hard to learn. I always thought I would be successful in life by conventional standards, and be accomplished and known for my accomplishments. Migraines had another plan for me. Rather, migraines planned to teach me that success can be measured in other ways. Success isn’t just what can be measured: degrees that you can hang on your wall, money in the bank, or awards you’ve received. A successful life also includes friends who are loyal, family who loves you and supports you, a spouse who is faithful, loving, and supportive. Accomplishments include all those ways you can contribute and build into the lives of those around you, by loving them, supporting them, being a loyal friend, spouse, or family member. Contributing to society, and trying to make a difference in something bigger than yourself, through volunteering and sharing your experiences with others when you can, count as accomplishments too.

I learned all this because I tried to be successful every other way. I graduated college with a good GPA. I planned to work a year then go to law school. I got that really cool job in PR at a local hospital, and I got a full scholarship to law school. None of that mattered, because those migraines that once were episodic, about once per month, became chronic and daily. So there went that cool job. I started law school anyway, but that effort was futile. I made it through a few semesters, with a medical leave of absence and two hospital stays in between, but ultimately the physical and emotional toll it took on me, my husband, and my family who felt responsible for me and my health was too great. So, I couldn’t work, and I couldn’t go to school. For the first time in my life, I had no way of measuring my worth, of measuring my success, or of knowing what I was going to accomplish. It was difficult. I felt lost—like I had no purpose. I was aimless, goalless, just….lost.

Gradually, with the help of therapy, friends, family, and my husband, and by finding ways to volunteer in things that I love (namely, politics and causes related to women’s issues) I finally feel like I have a purpose again. I finally see that I have value regardless of the degrees on my wall, the awards I have received, or the money in my bank account. I am successful because I love and am loved. Because I am a loyal, supportive friend who is surrounded by loyal, supportive friends. Because my amazing husband thinks I am amazing too. Because I come from a family that circles the wagons and supports each other, no matter what, and that’s pretty cool. I have more than some people with degrees and awards and tons of money could ever dream of having.

I just wish I weren’t so hard headed, and it took something less painful than migraines to teach me this. I learned it the hard way, but I am glad I learned it, nonetheless.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Wednesday, June 27, 2012

My Inspiration

Migraine Awareness Month Blogging Challenge #27: "In My Head and Heart"

Today’s blogging challenge prompt is to talk about who inspires you to keep trying and not give up, despite your Migraines.

There are many people who inspire me to continue to keep fighting, but primarily it’s my family. We are a tightly knit bunch. If it hadn’t been for remembering my family, and the love they have for me, I am sure there are many times I would have just given up on life completely.

My family is a pretty amazing bunch. We are unique in our ordinariness. By that I mean I have two parents still married to each other who just love their kids. They’ve never done those things that lead to a dysfunctional family life, they don’t stress me out, and they just love me. They would go bankrupt if that’s what it took to make me well, and I sometimes worry they might. I have an older brother who has sometimes played the role of a parent, but always played the role of a friend. He’s my team. If everything and everyone else in the world failed me, I would know he’s on my side. My husband, of course, I just can’t say enough about. He didn’t choose this life, but he has adjusted to it in a way that I sometimes just can’t believe. He’s almost too good to be true, but then he’s here, right beside me, and I know that I know that I know he loves me through all our struggles and all my pain and all that I’ve put him through. I don’t know how he does it. I don’t have a choice in this life, but he does. He chooses me anyway. That’s pretty amazing. The least I can do is not give up for them.

Finally, there are 3 kids that I adore. My niece and nephews inspire me to keep on going. They seem to just love me unconditionally without even knowing it. They think I’m cool, they think I’m fun, and they give the best hugs. They get disappointed from time to time when I have a migraine and they want to do something fun with me, but they always recover quickly. My brother and his wife have graciously let me be as big a part of their lives as I can be given the limitations of migraine and depression, and I love them for it. Those kids make my heart want to burst with love. They inspire me to keep fighting and find a treatment for this horrendous disease.

There are others who inspire me in different ways. I have some of the most giving, accomplished, and amazing friends. I am so proud of my friends, and so proud that they have chosen me to be THEIR friend. I am so thankful they put up with all the additional strain that migraines bring to our relationships. I think of them too when I think of not giving up. There are too many to list or go into detail about. It’s my family though, my family who have been there through this whole struggle. They have seen the worst, they know the history, the good and the bad of me, the darkest parts, and have loved me through it.

I just can’t help but be inspired by that kind of love.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Tuesday, June 26, 2012

What must my friends think?

Migraine Awareness Month #26: "From the Outside Looking In"

Today’s blogging challenge is to write about what you think your family, friends, and others think a day in life, a day with Migraine disease is like.

Asking a friend who doesn’t have migraines to understand migraines is near impossible. I mean, my mom says she rarely has headaches. I can’t fathom that. I rarely don’t have a headache. How can someone who rarely has headaches understand pain in their head like mine? That’s not to say that my mother or friends or anyone else doesn’t try. They all do. Some of them actually get it pretty well I think. I am luckily surrounded by some quite empathetic people. But unless you have experienced migraines, and not just migraines, but chronic, I-can-hardly-catch-my-breath-between-these-migraines, migraines, or lived with someone who has, it’s pretty dang hard to really understand them.

I have a few friends in particular who have the hugest capacity for empathy that I can imagine. They seem to honestly feel my pain. It’s amazing to me. I think they understand that a day in my life consists of lots of figuring out what I do and don’t feel up to at any given instant, and what medications I can take on that day and contingencies for if medications don’t work…. Somehow, they just seem to get all this. I live Christine Miserandino’s Spoon Theory, and they understand it without ever having heard it or read it. If you’ve never read the Spoon Theory, take a moment to read it. It’s eye-opening about how someone with a chronic illness lives. With these friends, I can talk about illness, and it’s OK. There is no awkwardness or judgment, they understand to the best of their ability, and all is well.

I have other friends who get it, but not quite to the same extent. I am equally as grateful for these friends though. We still get to hang out, they don’t tire of me or my inconsistency, and the friendships are great. We don’t necessarily discuss my illness much, but we don’t need to. It’s a refuge away from the illness in some respects. There are a few friends in this category that I think I could discuss the illness with if I chose to, but it’s been easier not to, to be truthful. Sometimes, it’s difficult to let people in to the inner pain and depression and all that comes with chronic migraines.

I have a few friends who have migraines themselves, and to be honest, it’s these friends who sometimes understand the least, I think. How do you understand when you have an occasional migraine what it’s like to have near unrelenting pain? To be always in one phase or another of a migraine? To be worn down constantly by the hangover of the last migraine and the fear of the next one? I know back when my migraines where episodic, I never could have imagined a time they would be like they are now. I mean, if you had described it to me I could have tried to understand, and I like to think I would have had great sympathy, but could I have really understood? Probably not. Back then my migraines lasted 4 hours or so and medication or sleep got rid of them every time. Oh—that would be heavenly now!

Don’t get me wrong, some of my friends with migraines, even the episodic kind, probably understand the most. They CAN imagine what it would be like, but there are some who just can’t. Their migraines either aren’t to the same degree as mine in intensity or they just don’t understand the way they totally control life when they are chronic. I know it’s easy to think “Mine aren’t that bad,” or “Mine last a day and I get over it. What’s the big deal?” I understand it would be easy to shrug my illness off if your frame of reference with migraines is what mine once was. What these friends, what most friends, don’t understand is the way I have to juggle medication days to ensure I don’t run out and that I don’t get into Medication Overuse Headache. The way I have to plan my schedule based on contingencies, always knowing plans can change because I might not feel well on a day I can’t take medication. I know they don’t understand the near daily nausea, the constant gastrointestinal issues (which is my nice way of saying diarrhea) and the need to be careful of what I eat and where because you never know when that will strike.

What I understand though, is it’s not totally their fault. Migraine IS an invisible illness. I don’t have a reason to wrap a bandage around my head when I have one, and even if I did, no one would see it because I am too sick to leave the house. No one hears the pain in my voice, and no one hears me cry, because I don’t make or accept phone calls. Not only is migraine invisible, I am invisible when I have one. I disappear from people’s lives. I might try to distract myself in the early stages so I might show up on Facebook, but when it gets bad, I’m gone. I’m in bed, interacting with no one until the storm raging in my head passes. How can someone understand how bad it is when they never see it and never experience it? My husband knows although he has never experienced it, because he lives with it. He sees it on an almost daily basis. Other than a regular caregiver though, I don’t know how someone CAN understand.

Thank you for reading this. Whatever group you fall into, whomever you know with migraine, always try to be empathetic and understanding. Always remember people with migraine crave quietness, stillness, no bright or flickering light, and no overpowering scents. Read The Spoon Theory. Migraines, especially chronic migraines, are a balancing act. We have a lot of choices to make to keep ourselves balanced and to try to live the best lives we can. Please let us make the choices we need to make with no guilt and no fear of your resentment. Encourage and love us. That is what we need from our support system.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

My nephew on migraines...

Migraine Awareness Month #25: "Through My Children’s Eyes"
Today’s blogging challenge prompt is to write a letter to yourself from your children.

So, I confess. I almost skipped today’s blogging challenge. I don’t have kids, and while I have enjoyed reading my fellow bloggers posts from their four legged friends perspectives, I have an outdoor pet, so she doesn’t know much about my migraines.
I never really knew if I wanted kids, but with migraines like I have, I couldn’t have them anyway. I am OK with it and I have this amazingly cool, understanding husband who seems to be happy with just me so that’s pretty awesome. I also have these awesome nephews and a niece who I just adore. I never imagined I could love kids so much. I know, I know, people say if I had my own it would blow how much I love these kids out of the water, but seriously, my heart couldn’t take it if that were true. So, since they are the closest thing I have to kids, I decided to ask one of them what he thought of my migraines. Here was what he wrote:

“My aunt Julie's migraines have always been there. no matter what I wanted, if Julie was having a migraine I couldn't do it. Sometimes we had to cancel plans we had waited on for quite a while, it always felt unfair, that Julie should have to deal with it and we didn't. Another thing with the migraines is that she has to take a lot of medicine to help with them and that can't be easy on her system as far as side-affects go.”

Now, I can’t write a letter to myself through his eyes. I just don’t know what he’d say for sure. I can tell you though that he asks me how I feel, he asks me how my head has been, and when he is with my mother (his grandmother) and someone tells her about one of those “remedies” that they read in Reader’s Digest or the Herbal Daily or wherever people get those “remedies” they tell about, he tells me as soon as he sees me to be sure to ask Granny about what someone told her would help my migraines. He pays attention and he cares. He even worries about my medicine, as his quote shows. He’s learning empathy from hearing about my migraines and watching me. Sure, he’s learning disappointment too when I can’t be there for him, and that’s heart wrenching for me. I wish he never had to be disappointed by anything that I had control over, but then, I realize, I don’t have control over this. I think he realizes that too. When I have to cancel plans, my heart breaks. But these kids always take it in stride—even though I know they are disappointed.

So, for all my migraine friends, if my nephew is learning this stuff in the little bits and pieces of time he watches me and is affected by my migraines, I know your children are learning valuable lessons from watching you with migraines too. They are seeing your strength; they are seeing you react to unbearable circumstances with what is likely patience and grace. They are seeing how your love for them overcomes your pain on most days and inspires you to do things that most people could not. Parents just seem to have a superhuman strength when it comes to their kids. I’ll probably miss out on getting that superhuman strength by not having kids, but I won’t miss out on the love. I love and am loved, and that’s enough.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Sunday, June 24, 2012

I wish, I wish

Migraine Awareness Month #24: "Dear Genie."
Today’s blogging challenge prompt is to put together a wish list for your life.

How do you even start putting together a wish list for your life? I mean, when you are young, you have these ideas in your head that I guess are wishes, but it’s rare that you ever sit down and put together a list. For me, most of those ideas in my head when I was young about what life would be like were just assumptions; I never realized they actually were wishes. I always thought that certain things would just happen, because I worked hard in school, made good grades, applied myself, stayed out of trouble, etc. Of course I was going to have the career I wanted. Of course I would make great money and be healthy and have a great husband and a “normal” life just like everyone else. Of course that would happen.

Then, it didn’t. All of a sudden those migraines I once had monthly turned into weekly, then quickly turned into daily, then somehow, I barely was able to get out of bed for six months. And all of a sudden, I realized how fleeting all those assumptions were, and how what I thought were foregone conclusions were actually just wishes. Nothing is guaranteed.

So, let’s see. Have my wishes changed much? I’d still love to be able to have a career. I don’t care so much if I make the big, big money, I just want to make enough to be comfortable, take some pressure off my husband and family, and be able to help my parents as they age if they need it. Health. HELL YEAH I wish for health. That, I’d have to say, is my biggest personal wish. If my health improved, I could probably attain most of my other personal wishes, such as having a career or going back to school or finally growing up and knowing what I’m supposed to do with my life. How can you really know what you are supposed to do with your life when you don’t really have any options?

I have many broader wishes that don’t just affect me personally. I wish there were fewer wars. I wish politics weren’t so gridlocked and were more transparent. I wish there was sufficient funds to adequately fund research for ALL the diseases that need curing—especially migraine. I wish my family would always have everything they need to be healthy and happy. I wish I understood more things about life. I wish there weren’t still prejudices against any group in the world. I wish there wasn’t such a term as “working poor”. I wish there wasn’t such a term as “uninsured” or “underinsured”. I wish doctors and patients controlled medical care, and not insurance companies. While I’m wishing, I might as well go full on Mrs. America on you and wish for World Peace. Who doesn’t want World Peace?

I think I may be missing the point of this prompt. I don’t wish for many tangible things. I’m lucky to have all the tangible things I need and most of them that I want. I just need my health now, and the world to make a little sense from time to time.

Oh, I almost forgot. I wish I was writing this from the beach…

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Saturday, June 23, 2012

Drinking Kool-Aid

Migraine Awareness Month #23: "I Drank the Kool-Aid!"

Today's blogging Challenge Prompt is: We all try things out of desperation, even when our common sense is telling us they're not going to do anything. Share your experience with this.

Wow, what haven't I done in the name of curing migraines? I've said I would sky dive naked into a forest of thorn bushes if I thought it would cure me. I've tried what seems like every drug known to man, although I know that isn't true, Botox, physical therapy, acupuncture, chiropractic, trigger point injections, nerve blocks, herbal remedies, massage therapy, and I am sure I am missing some things. I guess the thing I tried that made the least sense was seeing an alternative medicine practitioner.

It's not that I have anything against alternative medicine. It's just that this particular treatment was a little expensive, and as it turned out, ill-advised and quite unnecessary. I trusted this particular doctor because she was an actual M.D., she just chose to focus on alternative medicine. I had my first consultation, and she asked me to do a series of saliva tests so she could check what I think where neurotransmitter levels (serotonin and that sort of thing.) She got the results back and every single thing she tested was off the charts out of whack. What she didn't take into account though, is that almost every single medication I take alters just that particular part of my brain chemistry. I also wasn't smart enough medically to realize this. SO, I am completely excited that we FINALLY have figured out something wrong with me that might be fixable. She prescribes all sorts of compounded remedies that of course she sells and that are very expensive, and off I went to take handfuls of new pills per day, along with all the other migraine and depression preventives and abortives I was currently prescribed, thinking I would soon see a complete turnaround in my migraines and be on my way to a long happy life. I saw my regular doctor soon after, who of course, could not believe that anyone would expect that particular aspect of my brain chemistry to not fluctuate given the preventive and abortive medication I was on, since the medication was designed to alter those chemicals in the first place. After doing some research on my own, I was convinced my new alternative medicine practitioner didn't know what she was talking about. So, I had a cabinet full of compounded, herbal type of remedies that cost an arm and a leg that never got taken, and a temporary Kool-Aid stain around my mouth!

Since that time, I have shied away from these kinds of "doctors." We have a very, very small town close by with a doctor/faith healer/alternative medicine specialist/whatever you want to call it. People swear by him. Supposedly he takes one look at you and tells you you have undiagnosed scoliosis or an abscessed tooth or infected adenoids or some strange something that you go get fixed and are healed. Most of the time though, what he tells you is that you have some chemical imbalance that he, of course, just happens to sell the remedy for. This makes me a bit skeptical. I also am skeptical of anyone who says they have some sort of divine powers. I know the Bible says something about faith the size of a mustard seed, but I'm pretty sure my mustard seed isn't big enough to believe in this guy. So, I don't know, maybe I should be willing to go see him and try anything, because I am pretty desperate, but then, I hate to be taken in again by someone who has no clue what they are talking about, how to work with my current doctors and regimen, which I am not willing to stop, and who just wants to sell me their products. No more Kool-Aid for me, thank you very much!

What would you do?

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Friday, June 22, 2012

My Perfect Doctor

Migraine Awareness Month #19: "The Match Game."

Today’s Blogging Challenge prompt is to describe your perfect doctor to treat your Migraines.

Today’s prompt is an easy one for me. I already have three near perfect doctors. Count’em, three. I’m not trying to brag, I’ve just been blessed. See, I live in Arkansas, and have a doctor here, but travel to Philadelphia to see who I guess you could call my “primary migraine specialist.” Then I have a psychologist who I HAVE to mention when I discuss my migraine care, because he’s probably kept me alive multiple times over the past 14 years. I don’t have a preference between male and female doctors, but all my doctors right now happen to male. Just so you know, that’s coincidence.

We’ll start with Dr. Y., the “primary migraine specialist” in Philadelphia. He’s a guy you’d think would be kinda nerdy, and he’s very intellectual, but still super caring and really easy to talk to. He always remembers details about my life, my likes and dislikes, and I only see him 4 times a year. I find that impressive. After I give him my progress report during an appointment, he’ll take this long pause before he responds. I love that because I know I’m getting a thoughtful, well-reasoned response from him. I want his best idea for me, not just the next thing he’d recommend to any patient. The office runs pretty smoothly, I can speak to a nurse when I need to and can remember to take into account the difference in time zone and I don’t have trouble scheduling my appointments every 3 months. I don’t typically have a really long wait in the waiting room on appointment days, and while my appointments with him aren’t long, I don’t feel rushed either. That’s important. There is a dark corner of the waiting room, so if my eyes are sensitive to light that day, I can hide in that corner while I wait to be called to the exam room. That’s nice. He’s also had more success treating my migraines than any doctor I’ve seen in 14 years. I’m still searching for the silver bullet that will give me control of the beast, but until then, I celebrate any success I have.

My local neurologist is Dr. T. Dr. T. referred me to Dr. Y, which I think says something about both doctors. He’s also that super intellectual type of guy, but extremely easy to speak with. He’s very quiet and mild-mannered, and not egotistical at all. Like Dr. Y, he’s very, very thoughtful about his responses and seems to be quite protective of me, which makes me like him all the more. He’ll spend 45 minutes in the exam room with me, and never rush through an appointment. Granted, I might spend an hour and a half or more in the waiting room, but I don’t mind because I know he is giving his other patients the same kind of care he gives me. Dr. Y. is currently the guy who handles my main treatments and Dr. T is on hand for emergencies and to sort of keep things on track in case I need someone locally. His office runs very smoothly and is very receptive to calls and patient contact. The one area he isn’t perfect is that it takes a LONG time to schedule an appointment, but when you find a mostly perfect doctor, you have to share, I figure.

Finally, a conversation about my doctors would not be complete without mentioning Dr. D, my psychologist. He’s fatherly, sort of protective, and one of the most intelligent men I know. He’s been around now throughout my struggle with chronic migraines, so he’s seen me at my absolute worst. He’s never judgmental, but not afraid to exercise some tough love when it’s needed either. One of the best things is that he’s learned to walk in his office with me and immediately dim the lights and start turning off lamps! Now, that’s a perfect doctor for a migraine patient. He also knows when things are getting serious with my Depression and makes himself available outside the office by phone and email, and that has been a lifesaver—maybe literally. He’s taught me to cope with migraines, taught me things about myself that I didn’t know but should have, and he’s still trying to teach me about Depression. His office runs well too. Though he schedules patients fairly far in advance for a psychologist, his office is WONDERFUL about filling cancelations, so I can always be assured to have an appointment when I need one. I’m really lucky to have been referred to him by my very first headache specialist many, many years ago.

I’m very blessed with great doctors. I only wish all who suffer could have the same kind of medical care I have. May you too be blessed with wonderful doctors and medical care!

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Dear Editor:

Migraine Awareness Month #15: Free Blog!

Today’s blogging challenge prompt: Blog an a Migraine related topic of your choice.

Since we can write about anything we want today, and since the point of National Migraine Awareness Month is to bring visibility to migraine, I thought I would write a Letter to the Editor to be sent to my local and state newspaper.

Dear Editor:

June is Migraine Awareness Month. Migraine Awareness Month is not as sexy as some of the other Awareness Months, but I can assure you, Migraines are just as real and deserve just as much attention. Unlike many other diseases, Migraine disease is an invisible illness. Those with migraines don’t use crutches, or have a band aid on our heads when we are suffering—but we suffer just as severely as someone with any other painful disease. Migraine affects 38 million Americans annually and costs the US more than $31 billion in direct and indirect economic costs. According to the World Health Organization, a severe migraine attack is as disabling as quadriplegia. Many women with children who have migraines say they would rather go through childbirth again than have another migraine. Many people think that a Migraine is “just a headache”, but pain is just part of the Migraine attack. Migraines are often accompanied by nausea, sensitivity to light, sounds, and smells, tingling and numbness in the extremities, and gastrointestinal problems, among other things. There are types of Migraine that cause paralysis and fainting. Migraines are so much more than just a headache.

As you can see, Migraines have a severe impact on sufferers and on society, and none of this even addresses the excruciating pain caused to migraine sufferers. Depression, anxiety, and sometimes even suicide are the result of extended suffering from Migraine Disease. Please be aware of this awful disease, comfort those around you who suffer, dispel the myth that it’s “just a headache,” and influence anyone you can to give Migraine Disease more attention and to dedicate more funds for research for treatments and a cure.

Sincerely,

Julie


National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Be Well, My Friends

Migraine Awareness Month #14: "Live Long, and Prosper."

Blogging Challenge Prompt: Come up with a short, simple phrase or sentence that could be used when saying "Hello" or "Good-bye" that expresses your wishes for fellow Migraineurs.

The sentiment I would wish for my fellow migraineurs can be summed up by the words "Be well, my friend." It's a sentiment I would wish for all humankind, but especially for my migraineur family. Be well--because I wish them a sense of physical, emotional, spiritual, and mental wellness. My friend, because especially with a fellow Migraineur, I feel an immediate kinship when I know someone has suffered as I have. It's as if we are in a club with a secret password that only we have been given. It's not a club anyone wants to be in, but it's that feeling, that bond, nonetheless. So for all humankind, and especially those in the migraine club, Be well, my friends. Be well.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Out of Order

Out of Order

I'm going to have some Blog Challenge posts out of order, because I am going to go back and recreate the ones I deleted recently. I can't stand to have made the effort once and then they just disappeared. So, if you wonder why I all of a sudden can't count, this is why.

Migraines on My Wedding Day

Migraine Awareness Month Blogging Challenge #22: "The Game Changer."

Today's blogging challenge prompt is: "Tell us about a time your plans changed due either to an unexpected Migraine or an unexpected Migraine-free experience."

This should be easy, because days ruined by migraines happen all the time, but it’s tough to narrow down to one single event. It’s difficult for me to call any migraine “unexpected”, because I always expect to get a migraine. I’m always planning ahead and preparing for the next one, just in case. It’s not just a fact of life, it’s a state of being now. I can’t NOT plan and prepare for migraines after so many years.

I guess the story I should tell goes back to before my migraines became chronic, when I was in college and only had about one per month. Back then, I didn’t just expect a migraine all the time, so I wasn’t always prepared. Especially this particular day, I didn’t have time to prepare in all the hustle and bustle. See, it was my wedding day! Yep, I got a migraine on my wedding day. Luckily, it hit towards the end of our wedding reception, and I wasn’t miserable the whole time we were in front of guests, but by the time we left, I was in a bad state. My husband’s mother and sister had been staying in our new home before the wedding, and that is where we were going after the reception to change clothes. My new husband left to go wash all the decorations off of our car, and bless their hearts, he came home to find me in a wedding dress, hovering over the toilet, with his mother and sister trying to strip me so that I wouldn’t get vomit on my dress! We went ahead and drove about 35 miles to where our hotel was so we could be close to the airport the next day to leave for our honeymoon, and when we were within sight of the hotel, I screamed for my husband to pull over, and I vomited on the side of the interstate. Within sight of the hotel where we should have celebrated our wedding night. Poor guy. I don’t even think he got a kiss that night. I don’t think he wanted one after all he saw! He was introduced to all a migraine can do rather quickly in our marriage, but boy, I bet he never imagined the way they would shape the rest of our lives. He handled the migraine that night with love and grace and he’s handled every migraine I’ve had since the same way.

Over the past year, I have had more times with less pain than I once imagined possible. I had begun to give up hope that my pain level would ever even approach zero, much less reach the promised land for even a minute. I rarely have a whole day that is headache free, but I do have some pain free times. My migraines tend to begin slowly and build steam and energy, so I can function in the early stages. In those early stages, I actually do better trying to function and distract myself from what I know is coming. If I focus on it, it seems to get worse faster, and I’ve learned unless it’s a day I can take a triptan, I can’t stop it. During those pain free times, or times when I can function or can take meds, I try to make the most of it. I try to be out of my house, and stack my days full of all the activities that I didn’t get to do on the migraine days. I have found this allows me to be most productive, and still do the things that make me feel purposeful in life. I try to hang out with my husband and make the most of my time with him. I try to see my niece and nephews, and catch up with them too. There’s a lot of living to do in a short amount of time on those few good days, but I’ll be damned if I am not going to take advantage of them.

Wishing you all many, many good days….

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Thursday, June 21, 2012

Not So Good at This

I stink at blogging!

So, I really stink at blogging. I need to learn more about how something works before I start doing it, I think. I just accidentally deleted 4 blog posts that I thought were drafts from my blog! Boo. The lesson learned? Write the posts somewhere else then transfer them to Blogger so I have a back-up copy. Oh well. For those of you who didn't get to read them, they were the best four. Pulitzer Prize worthy. Priceless gems. I mean, you really missed out. Sorry.

My Biggest Fears

Migraine Awareness Month Blogging Challenge #21: "Shaking in My Boot."

What's your biggest Migraine related fear? How do you cope with it?

I would have to say I have two big, big fears related to migraines. How do I cope with them? Not well. The first fear is probably one that plagues every migraine sufferer. Heck, they probably both plague migraine sufferers. The first I'll talk about though is fear of the next big migraine. I have some fear of every migraine, but I can handle some better than others. The next BIG one though, ugh. Just thinking about it makes me want to curl into the fetal position and stay there. Not a very handy coping mechanism! I guess I handle it better than I once did. Once upon a time I was virtually paralyzed by the fear of the next migraine. Utterly and completely depressed, I spent most of my time in tears and in bed and locked in my house, usually in pain and always in fear of more pain and when the pain would become even worse. Now, I have at least realized that I can handle most of what migraine can throw at me, and what I can't handle, I have pharmaceuticals to help with! Thank God I have meds to knock me mostly unconscious through some of the worst of it when needed, and an ER close by that treats me fairly well. Still, there is the fear, because there is no way to escape all the pain. I will have to feel some of the pain before the meds kick in, and it just seems unbearable during those minutes and hours.

The second huge fear is one I imagine most migraineurs feel as well, it's the fear of letting people down. I grew up pretty much doing every thing right, being the good student, not getting into much trouble, keeping my parents happy, and even when I did things wrong, it was in a good way--if that makes any sense. It was that--look at Julie, she's being independent and we can be proud of that, kind of thing. Now, I can't be independent at all, I am not consistent with anything I do, I am scared to make advance plans... I always thought I would have a high-powered, professional career and instead, I can't work at all. I volunteer on the good days but I can't even do that consistently. It's maddening to not be dependable. People have come to depend on my independability. They don't seem to care. The people who love me understand, but I don't want them to have to understand. I want to be dependable and consistent, just like everyone else. I hate having to explain to my niece and nephews why I didn't show up somewhere, or that I can't do what they want me to or take them where I said I would because I have a migraine. That's so frustrating. I hate canceling on friends, I hate not working and contributing money to our household. All of this just makes me feel like a big letdown for everyone in my life. How do I cope with this feeling? I don't very well. Therapy, I guess. It's a work in progress. I typically just ignore it until I can't ignore it any longer and then discuss it with my psychologist and feel better for awhile and then it rears it's ugly head again.... As I said, it's a work in progress. It helps to remember that it's mostly my issue, that the people around me truly don't seem to care, they truly seem to have adjusted. These are my expectations for MYSELF. Still, though, we are our harshest critics, aren't we?


National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Monday, June 18, 2012

If Only I Could...

Migraine Awareness Month Blogging Challenge #18: "The Price Is Right"

Today's blog prompt is: What one thing would you do for the Migraine community if money were no issue?

Well, it' seems I'll participate in this challenge a few days and then miss a few days. That's just how my migraines allow me to operate, I guess. Oh well. On to the prompt...

What would I do for the migraine community if money were no issue? RESEARCH! Research, research, research. I would find out who is doing the most advanced, most cutting edge research around, and I would give them all the funds they need. I would find out which organizations are the best at distributing research funds between worthy projects for migraine and headache disorders, and I would give them all the funds I could afford to give. If we are talking that money is truly no issue, like, I am richer than God herself (see what I did there?) I would set up a service that would first help the uninsured suffering from migraines and headache disorders find a way to utilize services offered to them. Many who are uninsured because of cost don't realize that there are programs that offer ways for them or their children to get insurance. After that, I would offer a fund that would allow the uninsured and under-insured with migraine and headache disorders to receive the treatments prescribed by their doctors that Medicaid and insurance companies won't pay for. In other words, I would put healthcare back in the hands of doctors instead of the pencil pushers at insurance companies. I realize, I would truly have to be richer than God for this to happen. But, the prompt is, if money were no issue, so I am thinking pie in the sky here. I've always thought, why be rich if you can't truly help people, and there is no group I would rather help than those who suffer as I have had to suffer and been told "no" by an insurance company as often as I have been.

What would you do if money were no issue? Who would you help?

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Wednesday, June 13, 2012

A Letter to Me

Migraine Awareness Month #13: "You Are Beautiful"

Today's blogging challenge prompt: Write yourself a love letter. Tell yourself how wonderful you are. Remind yourself of the things you have accomplished despite Migraines. There are times when we need to be reminded of the good things about ourselves that others see that we may have missed.

OK, first off, I've missed a few days again. That's what happens when you have chronic migraines. UGH.

So, write myself a love letter, eh? Interesting. I'm not even sure how to start. I recently won an award. It was a pretty big award for me, Democratic Woman of the Year for my state's Democratic Women's organization. I could think of at least 100 women I see on a regular or semi-regular basis that I think probably deserve it more than me, but I won it anyway. The women who nominated me where some pretty amazing women themselves and anyone of them deserved the award more than me, actually. I don't know if I was supposed to read it or not, but my husband let me read the letter that these women wrote to nominate me. It made me realize that I have done a lot of things in spite of these awful monsters called Migraines. Sometimes when I need to be reminded that I am more than just a big pile of pain and migraine, I re-read that letter. I believe I'll read it now, and then try to write something heartfelt to myself...


Dear Self,

Once upon a time, you thought your worth was to be measured by your accomplishments. Boy, times have changed. Migraine taught you that. Life is made up of so much more than just a series of accomplishments and degrees and trophies you can hang on your wall. It's about the people who love you and the people you choose to love, and the contributions you can make to the world, illness or not. It's about the people's lives you can touch in some way or another, and the positive impact you can have. Without Migraines, I am not sure you would have learned that, or not sure when you would have learned that.

You still feel sometimes like you don't have a purpose or you aren't doing enough because you can't have that high-powered career you always dreamed of. Don't. You have more than so many will ever get to have. You are the center of your husband's universe, you have parents and a brother who would do anything to make you well, you have a niece and nephews who think you are the funnest, coolest person on the planet, and friends who love you in spite of your crazy inconsistent migraine schedule. On top of this, you've found a way to volunteer for things that matter on the good days, and found a way to be involved and contribute to the world around you in a way that works with your schedule. A few years ago, this would have been impossible because there weren't any good days. Rejoice in the improvement! Rejoice in the contributions you can make!

When you get depressed and feel like you aren't doing enough, or feel overcome by pain, think of yourself as those who love you think of you. See yourself as the wife at the center of your husband's universe, as the daughter and sister your parents find so worthy of love, as the cool aunt that your niece and nephews just want to hang out with. Remember your friends, who in spite of migraines, still call and write and want to hang out. Life is about the people who love you and those you choose to love. Remember the joy you get from volunteering for worthy causes. Life is about the contributions you can make and the positive impact you can have. Remember there is so much more to life, and so much more to you, than pain and migraines!

Love,

You

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Sunday, June 10, 2012

Spokesperson Hillary Clinton

Migraine Awareness Month #10: Name the Spokesperson

Today's Migraine Awareness Month Blogging Challenge prompt is to choose any celebrity to represent Migraine (whether they have Migraine or not). Who would it be, and why?

Well, first off, I have missed a few days again. Stupid migraines. I'll pick up here and go on.

If I could choose any celebrity to represent Migraine, I believe I would choose Hillary Clinton. I would let her finish her term as Secretary of State, possibly, or maybe not, but either way, she's at an all time high in favorability ratings, and that's not likely to drop, and like her husband, she will have a long, long life in the public eye whether she is actually working in government or not. She has been a torch-bearer for healthcare and related causes, and when she speaks, people listen. While Migraine isn't just a women's issue, it affects women predominantly, and Hillary is one of the strongest and loudest voices in the public square when it comes to speaking about issues affecting women. She has relationships with policymakers, she has relationships with those who could raise funds for research, and she gets the attention we need to shed light on our struggle with migraine and make Migraines visible for us. Hillary Clinton would be the ideal representative for Migraine Disease.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Wednesday, June 6, 2012

My Own Prison of Migraines

Migraine Awareness Month, #6: Name that Tune!

Today's prompt is to choose a theme song for Migraine disease and see if there is a YouTube video of the song to add to the blog post.

I think Creed's "My Own Prison" is always the song that comes to mind when I think of migraines. The title kind of says enough, don't you think? The song was originally written about the lead singer of Creed's questions about religion and God, but the way it talks about the prison he feels he's in describes what I feel during a migraine precisely. I'll quote some of the lyrics, selectively:

"The walls cold and pale
The cage made of steel
Screams fill the room
Alone I drop and kneel."

"Silence now the sound
My breathe the only motion around"

"All held captive out from the sun
A sun that shines only on some
We, the meek, are all in one."

The lyrics describe the cool, dark, silence I need when I have a migraine. Screams fill the room, and alone I drop and kneel--though I can't scream out loud, I want to scream at the pain, and it FEELS as though there are screams in my head. I don't kneel, but I plead with God or any power that might take the pain away. In describing how the writer is captive out from the sun, it describes how light hurts, and how I feel captive by the pain, away from the world, like the sun only shines on those without migraine. It's a very lonely feeling when in pain. I hate to complain, but that makes it all the lonelier in some ways. Finally, the line "We, the meek are all in one" reminds me that really and truly, only those who go through the same pain of migraine understand how I feel. I am so blessed to have others in my life who are very sympathetic and empathetic, but to really understand the pain, the loneliness and fear, only those with chronic migraines or another painful debilitating illness can understand it. It's not a failure of those around me who try to understand and truly want to understand, it's just how it is.

The link to the video can be found at Creed--"My Own Prison".

What is your theme song for Migraine disease?


National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Tuesday, June 5, 2012

A Hot Bath and an Ice Pack

OK, I've missed a few days, but what can you expect? I have chronic migraines. I'm picking up at day 5.

Migraine Awareness Month #5: "Do That To Me One More Time."

Today's prompt is: What comfort measure do you find helps you enough during a Migraine that you go back to it again and again, and how do you use it?

Like most migraineurs, when I have a migraine, I need quiet, darkness, stillness, and silence. Occasionally, I can distract myself from the less severe pain with TV or Facebook or something like that, but that's just for a short time before my eyes get tired of focusing on something and I need to rest them. Ice packs on my head and neck sometimes help, but sometimes can be more stimulation than I can handle. Something I have recently discovered that is calming to me is to take a hot bath with an icepack on my forehead. My theory is that during a migraine, there is too much blood flow in my head and the hot bath combined with the ice on my head work to push the blood to the rest of my body. Now, of course, that's just my theory. I don't really care why it seems to help. I just care that it helps. Sometimes, I can't bear the thought of all that's involved with a bath, the running water, the minimal lighting that must stay on in the bathroom, the drying off, all the movement involved, so I can't use this tactic and must just retreat to my dark, quiet, still, and silent room, but for the migraines when I can stand it, it's very soothing and calming.

Thanks for reading!

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Saturday, June 2, 2012

Tea for Two--with Michelle Obama?

National Migraine Awareness Month #2: Tea for Two

If I could invite anyone to my home for tea so that I could explain migraines to them, I would invite Michelle Obama. And, I might hedge my bets by inviting Ann Romney too (on a different day, perhaps!) Seriously, though, I have always wondered, though I would never wish this on them, say in 2001, if one of the Bush twins had chronic migraines, what resources might have been devoted to the disease? Or what if one of the Obama girls had them chronically? We need someone with a powerful voice, and large platform to speak about the issue from. In addition, Mrs. Obama has the ear of the most powerful voice in America. While I understand the President doesn't set the NIH agenda, he does recommend their budget (when his budget gets passed) and he influences policymakers. No one influences this President more than his wife.

I would explain the disease to her (it's debilitating), explain how migraine affects our veterans returning home from war (it affects 37% of men and 57% of women returning with concussive head injury), explain how many Americans are affected by migraines (1 in 5), but I would mostly explain my personal story, because there are so many others like me. I would ask her if I was her sister or daughter what would she want to see happen? Is there something she could do to make that happen?

It may also be a little bit selfish that I would choose Michelle Obama, because I think she's fabulous. But if there is anyone who could influence policy for us all, I think it would have to be someone at her level. Or maybe the head of the NIH.... But there's nothing I could tell him or her that they don't already know, and they probably aren't as fabulous as Michelle Obama.... So, yep, I'm sticking with Michelle!


‘National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com ‘

The Migraine that Mattered

Migraine Awareness Month: Your First for the First

So... This is my first attempt at blogging and an attempt at remembering my first migraine. To be honest, it's impossible to remember my first migraine. I've had them since childhood. I remember crying with headaches at my babysitters before kindergarten. I cried in kindergarten. I cried at home. I just remember always having these unexplained "headaches" that made me cry and throw up sometimes. A doctor told us to cut my hair because it was too heavy, so I have pictures where I look like a boy at around age 6 or 7. I think I was taken to the ER for the first time with a "headache" in 2nd grade--you get the picture. What I can tell you about for certain is the day that my mother finally realized something was really wrong and I finally got diagnosed and got treatment.

It wasn't my parents fault that I went so long without treatment. I had headaches for so long I just thought everyone had them and I didn't realize there was anything specifically wrong or different about me. I slept a lot, to "sleep it off" and Mom and Dad just thought I was staying up too late at night. In high school, I began taking 4 or 5 Advil at a time and I didn't think to tell anyone I was doing that. Back then, you could carry Advil in your purse and schools didn't care. It was the only thing that kept my head pain manageable. I don't guess I ever mentioned how often the pain occurred or how severe it was to my parents. It wasn't until the year I graduated high school when I was leaving my summer job that my mother realized that something was really wrong with me. I don't remember a lot about it because the pain was so bad, but I remember being in my car and just thinking, "This pain is awful. I have GOT to get home." I guess passed my mother on the road on the way home, not realizing it, and evidently I was driving recklessly. When I stopped to turn into my road from the busy highway between the town where I worked and my small community, I remember having my head in my hands, then looking up and just turning, without noticing the line of cars headed my way. Luckily I swerved back into the turning lane without getting hit or hitting anyone, but my mother was right behind me waiting to turn in after me and witnessed this. By the time we got to my house, she was scared and upset after seeing me almost cause a major accident, and she could see on my face that something was bad wrong. I told her how my head always hurt and when she realized the severity, she made me an appointment with a headache specialist.

The headache specialist diagnosed me with migraine and recommended that I stop taking over the counter medications for pain completely. She told me to stop drinking caffeinated drinks, which I drank a lot of, and she prescribed a preventive medication regimen. Because of all the daily analgesic medications I had been taking, I was having Medication Overuse Headache (MOH), or rebound headaches. I went through a few weeks of hell from withdrawing from the Advil and caffeine. I was prescribed the abortive medication Imitrex, but I didn't like the way it made me feel, so I tried Zomig, and it worked well. I was also given Vicodin for pain, but told not to take these more than two days per week.

As a result of cutting out the OTC medications and caffeine, I stopped having daily headaches and was left with, on average, one true migraine per month and some other milder headaches in between. This was very acceptable to me after having daily pain. This was pretty much the state of my migraines throughout college. I worked, did well in school, got married, and wasn't hampered too badly by the migraines back then. A few years later though, boy, things got worse than I could have imagined. Oh, for the good ole days....

So, I don't remember the very first migraine, but I remember the migraine that finally got me on the path to treatment. That was the important migraine.


‘National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com ‘