Saturday, June 30, 2012

#NMAM Blogger's pick... (confession!)

Choose your favortie blog post from any of this month's prompts from someone else's blog to share with us, and tell us why it's your favorite. Okay, here's where I have to make a confession. I don't read other people's blogs! Why? I don't know. I like the stuff founded in science. I read scientific blogs all the time. But I'm ashamed to say, I don't normally keep up with my fellow bloggers, unless you're on my Facebook feed...

When I blog here, I like my stuff to be well researched. Or, I like to debunk misinformation out there presented by professionals as "fact." That takes a lot of time. In fact, after starting my full time job, I've realized that all the research I was doing on sites like,, and WebMd is a full time job. I haven't been able to keep up with it while working and doing this blog-o-thon! I really do pour all of my time into what I'm doing here, and I have nothing left for anyone else. I don't know if that's a good thing or a bad thing.

So there's my confession... though I participate, I'm still a loner. That's why I'm so thankful for everyone who reads my blog. I know I don't do the same, except on rare jaunts of curiosity! So thank you... from the bottom of my guilty heart.

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

P.S. If your blog has a Facebook page, post it here and I'll be better about following it! lol

Friday, June 29, 2012

#NMAM More Often Than Not

Today is Chronic Migraine Awareness Day. People with Chronic Migraine have a Migraine or headache more often than not. Think of and share a random act of kindness that you can do for someone with Chronic Migraine. I have many ideas. But I want you to join me on a little thought exercise first. Here's what I want you to do. I want you to imagine your worst hangover. Now, instead of that getting better, I want you to imagine that lasting for days. Think of what you wouldn't be able to do. Then ask your migraineur friend if they need help with that.

If they're comfortable with it, see if there are some household chores you can do for them. Laundry. Grocery shopping. Running errands with them and be an extra pair of helping hands. Mow, or get someone to mow, their lawn for them. Help them with their pets. Make one of those coupon books: "One Free Grocery Shop - I will go grocery shopping for you (you pay for the groceries)." Stick in there any favor you think they would need help with, while in blinding pain. Ask them what they need help with. Make a list. Keep the things you will do. Pass on the others to a friends to help.

Find out what their migraine triggers are and what they like eating during a migraine. Make healthy homemade snacks that don't include any of their migraine triggers, that they can eat when they're too sick to cook. Find out what helps them in a migraine and make a gift basket of those items: reusable cold packs, rice sock, top-rated ear plugs, full-dark eye masks, and personally for me, Trader Joe's truffles and Red Bull (both help my migraines, ymmv).

Give them something that will help them laugh. Even if it's not during the migraine phase, laughter does help heal the body. Find out where they get their laughter from, whether it's stand-up comedians or comic strips. Give them the gift of laughter.

Those are my suggestions. Take what you like, and leave the rest.

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

Thursday, June 28, 2012

#NMAM "Lights, Camera, Action!"

Pick a movie character you can identify with, talk a bit about them and why you identify with them. I couldn't figure this one out last night, and then a migraine attacked. Oops.

Wednesday, June 27, 2012

#NMAM Learning to Self-Care

Talk about who inspires you to keep trying and not give up, despite your Migraines. There's a little girl who lives inside of me, my inner child, and I have to remember her in everything I do. She came to me once in a vision. I was in a level 10 migraine, and there were some pain pills on the counter. I was refusing to take them. I was in the shower, with the water on as hot as I could stand, to counteract the pain of the migraine. My vision went white, and they came to me: an impossibly beautiful version of myself, hand-in-hand with that little girl. And the woman said to me...

"Can you explain to this little girl the amount of pain you're in right now? Would you let her go through the amount of pain that you're experiencing, right now?"

Horrified, I answered, "Of course not!!"

The woman then put her hand on the girls shoulder, and I felt her hand on my shoulder. "So why are you doing it to yourself?"

I immediately got out of the shower, and dripping wet, took the pills.

There's a little girl that lives inside of me, and she's the culmination of me-of-days-gone-by. She wasn't treated properly when she was sick, and so I didn't learn properly how to treat myself when I was sick. I had to relearn all of that. So my best indication of whether or not I should allow myself to withstand something is if it makes sense to her. If she can understand it, and she understand good suffering---like suffering to get stronger, then it's okay. Once it no longer makes sense to her, I need to stop and think about what I'm doing. If I'm standing in a scalding shower, unable to do anything else, it's time to take the pain pills.

I do this for me, and everyone like me. Because I've had to figure this stuff out on my own, and these lessons came hard and at a high cost. People should know this stuff, so we can help heal one another.

So here's to you & me. Cheers!

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

Tuesday, June 26, 2012

#NMAM From the outside looking in

Today's challenge is: Write about what you think your family, friends, and others think a day in life, a day with Migraine disease is like.Mom: "I think it's lyme disease." Sis [screaming]: "I've got such a headache!! My Dad, Aunt Ge, Step-Mom, Step-Brother: *blink* *blink* "All y'all just don't know."Migraine disease doesn't just run in my family, it moves in and starts rearranging the furniture. I have one cousin who also started to get chronic migraines, but was able to control hers. I have another cousin who has chronic vertigo, controlled only through medication. Then there's me. I like to say that we all hurt and it all sucks and there's no competing... Everyone else says I win.

My migraines were controlled only through a bionic device, then through moving to a higher elevation with less severe barometric pressure swings, and medication, such as Botox, Neurontin, Advil, Toredol, and others. The biggest part of the migraine is no longer the pain, I'm glad to say. My doctors have that under control. It's the mood swings, for which there is no medication, that takes more finesse handling. And if my good rapport at my place of employment is any indication, I'd say I'm doing pretty well in that last department.

I am taking advantage of SSDI's "Trial Work Period," which allows up to 9 months of employment---at any income I can get---and I won't lose me SSDI benefits. I wasn't so brave as to try all 9 months at once. I went for a 2 month contract. I cannot tell you how much better I feel about myself, even though I'm not sure I want to continue past 2 months if offered (telecommuting would have to be on the table). I can't believe everything I forgot about myself, just from being away from the work environment. Here are some observations:

I love working. I always did. I still do. I love the type of work I do. I miss the rhythm and flow of it. I miss making great documentation. I miss wowing a customer. It's a complete delight to be back, and I don't even mind waking up early in the morning! What I do mind is all the pressure and anger that people get involved in, over things that aren't even in the same time zone as life and death... but they get all worked up as if that's the case. Angry, as if that's the case. It blows my mind how different my perspective is. Not just: "That's not worth getting worked up about." but also "Just because you're worked up doesn't mean I have to get worked up." and "You have no right to try to get me worked up about that." But most of all, "I don't have to get worked up to get good work done." So many people are married to their anxiety, as though being anxious about something is a magic shield that wards off bad outcomes. The more I worry, the more that will make things go right! Now, I'm not advocating just a live-in-the-moment attitude. The moment is fickle, and tomorrow takes planning for. But worry, past what is responsible, has no payoff. So don't do it.

I went through a war with my body, wherein I was taken prisoner, and tortured for ten years. You don't walk out of that experience the same person as you were, walking in. So I'm not even sure, sometimes, who I am. But I do know my limits. I can work a short while, then full-time (without telecommuting) is too much. I can finish what I started, but after that, a break. After this blogging event, I need a break, too! lol!

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

Monday, June 25, 2012

#NMAM Through My [Hypothetical] Children's Eye's

Write a letter to yourself from your children. I will leave this one up to the people who have children.

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

Sunday, June 24, 2012

#NMAM "Dear Genie"

Put together a wishlist for your life. There's one big thing that I've always wanted from my life, and that was a family of my own: a partner with whom I felt a true bond, children of ours to raise, and all the trappings that go with it, plus a small corner of the world to call our own. Right now, that's not possible. My female hormones from my pituitary will randomly quit on me. I've never been pregnant. They don't know if I can be. This breaks my heart. There is hope, after my cure, that it would be possible for me. However, that means starting a family in my 40s, which in itself is high-risk.

I wouldn't mind marrying in to children. I love all kids, whether they're mine or not. When I was a teen, my family called me the Pied Piper, because I used to take care of all my little cousins, from crib age to age 9 (I was 14). My mother, when she couldn't come up with a reason for why she did things, would say, "Well, that's how they taught us in Mommy School." Even as a child, I knew she was shining me on. There was no such thing as Mommy School. But then, as I grew older, I realized... No, there really is such a thing as Mommy School, and it's the wisdom of every mother, every grandmother, every great aunt, every woman who's ever had a child... They all have something to teach.

So I learned. We all would vacation together in a small area of Michigan. And when I say "we all," I'm talking 3 generations of 5 families, wherein each family averaged four kids. Around 100 relatives, some of whom are double-first cousins. I sat myself at their knee and I asked them how they did it. And they told me, and showed me, and I listened. I would take care of my younger cousins, and put my lessons into practice. I vowed that I would raise them to be cooperative and kind towards one another; something that my generation did not experience.

During vacations, I would gather up all my younger cousins and take care of them, collectively---as a group. One summer, I decided to teach them a choreographed dance. This is something that I knew would be difficult for them (ages 5-9). Everything about childhood is about instant gratification. I wanted to show them the secrets of delayed gratification. So I came up with a little dance, set a popular song at the time, and I asked them it they wanted to put on a show for the adults. They, of course, were skeptical.

I bribed them. I told them that we would practice for 15 minutes and then play for 15 minutes. Play and practice would get equal time (unlike in school). They thought I was being generous with all that play time, and it only seemed fair that work and play would equal... They figured they could put up with my teaching them something for 15 minutes. I was known for teaching them cool things, but their patience would naturally wear out. Fifteen minuets wasn't too long of a lesson time. They accepted.

At first, they were all about the play sessions. The dancing was work. It was hard. They would get things wrong and disappoint themselves. Play was all fun. There was no disappointment there. But then, as they started to get better and better at their parts, as they started to achieve, and get applauded by their fellow cousins for that achievement... well, then, the work started to be more fun, and they wouldn't want to stop to play!

But I made them stop anyway. I stuck to the script. some rules are there for a good reason, even if it doesn't make sense at the time. Even it it seems counter intuitive at the time. I told them Even when you're excited and want to press on with your work, take a break and go play to refresh your mind. Then when you return to your work, you'll find that things flow more naturally. They didn't believe me, and at first, it was hard for them to want to play again. But they got back into the grove, and before they knew it, it was dance time again. Sure enough, this time when they did things, it was easier, and they hadn't even been working at it! They looked at me like I'd just done a magic trick. I told them it was they who had done the magic trick---their mind did the work for them, because they had rested and stopped thinking about it.

When they put on the show, their parents couldn't believe it. They couldn't believe themselves and the reaction they got. twenty years later, that generation is still loving, inviting, encouraging, accepting, and fun. They've grown up to be amazing adults, and I'm so proud of every one of them. One of them even told me later of our time together, "You gave me the courage to be who I am."

There is nothing I have wanted more than to have my own family, children born of my own body, nurtured from my own breast; Raised in a family that is nurturing, protective, and spiritual; Part of a community that is connected, supportive, and accepting; A very extraordinary, normal life; Suburban or urban (I lean more towards the urban and the slower pace of life).

I want to be there to watch another set of beings grow into this world. I want to teach them how to manage the hurts and deal with the hardships, and find joy and happiness throughout. I want to show them how to be supportive and loving towards one another, so they can be there for each other once we're gone (my partner and I). I want to see them fly to higher heights than even I dreamed of, soaring to success on their own wings, launched from our shoulders. I want to see them find love, and make families of their own. I want to grow old and wise with my partner, and spoil my grandchildren in that delightfully wicked way that grandparents do.

I want to write a book... or maybe books. Paint paintings, sell my artwork... Make enough money in a career I love to be able to support that dream...

That's what I wish for.

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

Saturday, June 23, 2012

#NMAM I drank the Kool-Aid...

Today I'm supposed to write about "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. I don't call that drinking the kool-aid. I call that the scientific process. I can't know in my mind it's not going to work. I have to actually try it. That's just making information complete. Nothing bad in that... So I'm a little confused. I guess I'll just have to wait for other people's answers to see!

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

Friday, June 22, 2012

#NMAM The Game Changer

See my bio.

I need a break.

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

Thursday, June 21, 2012

#NMAM Shakin' in my Boots

Todays' blogging question is: "What's your biggest Migraine related fear? How do you cope with it?" My biggest fear, easily, is that the migraines will come back with the same force and duration that disabled me in the first place. Even while on a steady diet of 60mg Oxycontin per day, I was still averaging an ER visit about once a month. Even after they implanted the Occipital Nerve Simulator, I was the only one in the study to use it past 8. The doctors were floored that I could tolerate it at max power of 20. I wished the machine had gone to 40, but that's reaching lethal levels.

When a migraine goes past 72 hours, I start to panic. That's how the last one started. It just started and would not stop. I could throw all the medication I wanted to at it, and it just went on, and on, and on. It varied in intensity. Some days were absolutely miserable, and those were the good days! Bad days were an epic hell that took every ounce of stubbornness and tenacity just to get through. If I can't get my migraine under control in less than 72 hours, I'm in real danger of falling into another epic cycle again.

See, my 4.5 year migraine wasn't the first to last a long time. By my blogging estimates, I believe I had a migraine the previous year that lasted 5 weeks. Around the same time of year too. I worked through the pain. I was a one woman drain on Cafergot. I had run out the supply in Washington state. I had run out the supply in Oregon. I had run out the supply in Idaho and, according to my pharmacy, I was starting to clean out northern California, when my doctor finally switched me to a different medication.

I didn't think any of that was abnormal at the time. Now I know different. Now I can see the signs of the tiger hiding out in the darkness, waiting to strike. And when the signs become numerous, and continuous, I start to freak like a tiger is chasing me.

How do I cope with it? Responsible denial. I deny that which I can't fix, and just try and slog through it, unless the symptoms become urgent or chronic enough to warrant care. When that happens, I'll shut down internally and go into pure intellectual mode. I'm in shock, and I'm trying to cope anyway. The feelings are to big for me to manage, so I shut them all off. That way maybe I have a chance to think. Unfortunately, the amount of adrenaline in my system, usually causes racing thoughts. So these are the times when I write and blog. It helps me get my thoughts together, and not just spinning out of control on a hamster wheel.

And I'm starting to develop some faith. Not traditional faith, but a kind of faith nonetheless.

But most of all, I recognize that my fears of a massive migraine phase is perfectly reasonable given my experience. My fears of it happening again are part of my Medical PTSD. So I also do therapy and take head meds.

And I try to tell myself the boogeyman isn't real and living in my head...

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

Wednesday, June 20, 2012

#NMAM "Run, Forrest, Run!!!"

Describe the approach you think is best when it's time to move on to a new doctor. The following are times you should leave. 1) When they don't return your phone calls. 2) When you have to do their office work for them. 4) When they diagnose by just looking at you. 4) When they give diagnostic orders opposite of the what test result are. 5) If they accuse you of behavior you know you're not doing. 6) If they refuse to run a simple blood test.* 7) When they lie to you. 8) If they don't stop when you tell them that what they're doing to you hurts. Yes, these are all personal experiences.

I was told that I was drug seeking... for prednisone (laughable in itself). I was told, "Nobody can be that sick!" by the doctor who has been my family's doctor for generations, and knew me before birth. I was told not to make a follow-up appointment on several occasions, with the line, "I'm sorry, we have nothing left for you..." Which really means, "I'm sorry, we have nothing left we're willing to give you..."

*I had a doctor who refused to run a cortisol test on me. If he had done that, I wouldn't have nearly died from an adrenal crisis. And I would have been diagnosed, and put on treatment 3 years earlier. I would have gone through 3 years less of suffering and struggle. I wouldn't have reached any of my miracle cures sooner, but I would have had to endure less in the meantime. Hell, they probably could have made me functional enough to keep working, but because of the combined arrogance and the War on Drugs (read: War on Patients), I ended up disabled and on government assistance.

However, my caveat to number 6 is, don't just go in there and order blood tests every week. That looks like a villain that doctors are told to ignore: "Googleitis: I read it on the internet, so I must have it." If you think you have something, don't go in there with a print out and say, "I have all these symptoms." Not unless you absolutely know you can trust your doctor to believe you. Instead, if you think you have something, first tell your doctor the story of what your day is like. Describe what going through the symptoms is like and how it impacts you. Then you might say something like: "Now, I was doing some research out of curiosity, and I came across this diagnosis that seemed to match. What do you think?"

I've written number 9 before. It's a tough topic, so I don't mind putting it out there more than once. It helps with my healing. With one doctor (a surgeon, go figure...), they almost needed a pair of pliers, he had driven the needle so far into my skull. He assume I was lying to him when I told him it hurt. He'd aimed wrong. He had a live Xray on (not just a snapshot, but a here's-what-you're-doing-right-now-Xray machine), but he misjudged anyway. The needle was supposed to go along the top of my skull, without touching the very sensitive tissue that lines it. He took that needle and drove it into that tender area, and drove so hard, that they almost needed a pair of pliers to get the needle out of my skull.

This doctor was so arrogant, he didn't believe is own senses! He had to push to drive it in. That's no small matter, putting steel into bone. He managed it. He ignored the resistance he was meeting. He ignored what I was telling him. I screamed so loudly, they heard me 3 floors down. That was also the surgeon, under whose care I didn't receive enough anesthesia, and woke up, post surgery, but still on the operating table. I woke up because my chin was burning. My chin was burning because they had infected me with MRSA. The MRSA that almost killed me multiple times. Unfortunately, he was the surgeon assigned to the study, so I had no other choice.

How do you fire a doctor? Just don't make a follow-up appointment. It's that easy. What's not so easy is explaining to your Primary Care Provider (PCP) why you needed to fire that doctor. In my experience, if you can give your PCP any of the reasons listed above, you'll find your provider will agree, "Run, Forrest, run!!!"

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

Tuesday, June 19, 2012

#NMAM The Match Game

Describe the perfect doctor for your migraines. I'm extremely lucky. Although she is no longer my migraine specialist, when she was, she was AMAZING. This woman, while she was out sick with the flu, read up on my 4-inch thick medical file. She called me at home when she had THE breakthrough. At the time, she was also a pain specialist. She was the first pain specialist to believe that I wasn't a drug seeker: "I know why none of these medications have worked on you," she told me, in her thick, eastern European accent. "They can't!" She was the one who stopped the 4.5-year migraine.

The Navy had moved my husband and I from the high desert (elevation above 5000', 300 days of sunshine a year), to the greater Seattle area (sea level, 300 days of clouds a year). We had just discovered my pituitary insufficiency, and had even had the Navy delay our move and put us up in a hotel, because we were in the middle of diagnosing. I landed in Seattle with new medical information, and I was just getting my medical dream team together (Swedish Pain and Headache Center was listed as the best, and Dr. Francis Broyles was one of the best endocrinologists, and my rheumatologist had top reviews too. But it was Dr. Elena Robinson who was my migraine miracle worker.

After being able to confirm that my migraines were not medication-induced (my one-month adventure with disassociation on Gabatril, aka Tiagabine, allowed that), she put me on long-term pain pills, along with medication that wouldn't come into conflict with my pituitary disease (medications that affect the salt channels can't work on me while I'm on a salt-regulating medication!). She taught me everything there was to know about the most cutting-edge theories of pain and nerve plasticity, long before I discovered the TED and university talks that discuss the same thing. It was with her help that I was able to write my paper on migraines. She took time out with me at each patient visit, often allowing me to stay longer (because she knew I had the time to wait) and giving me more information at little breaks she was able to get between other patients. She always answered all my questions, and let me know what her thinking was.

She wrote letters to Medicare and Tricare on my behalf, trying to get botox approved for my migraines when the FDA hadn't added it to their magical list yet. She wrote letters to the Department of Education to try and get them to stop garnishing my student loans (through an application for permanent disability). She bought me chocolates (completely forgetting in the panic of the moment, that chocolate was one of my triggers), after the horrible incident with the surgeon. She called a pharmacy to yell at them when they refused under the "morality clause" to refuse to fill a pain prescription. She yelled at another pharmacy for me when they screwed up and put "take every 1-2 hours" instead of "take every 12 hours" on a slow release narcotic I was on. She was the one willing to try the Fentanyl lollipop for me (a medication I was required to keep under lock and key), only to discover (to our chagrin) that Fentanyl doesn't work on me at all.

Most of all, she believed in me. She believed in my willingness to fight and beat this, and not be a heart-sink case, even though everything else had failed, and I was in "here there be dragons" land of the medical world. After she knew it was my disease, and not me that was obstinate and difficult, she was a champion for me. I miss her, but I'm glad I no longer need her.

I still average 1-4 migraines a week, but now they're so minor that they rarely get in my way. Every once in a while, when the weather goes really wacky, I'll be down for the count. The only thing that isn't medicated is the emotional swings (because there are no medications for migraine mood swings). But given my current tool box, I'd call my migraines managed, which is absolutely amazing, considering where I've been.

Migraines took me to a deep, dark hell, one from which I thought there was no escape. But I climbed those obsidian walls, through brimstone and fire, and pulled myself up from those depths, to see blue skies again. The future is even brighter. Now, perhaps if we're able to manage or eliminate my pituitary disease, we might be able to take the migraines down yet another notch! This will allow for less medication, and the less medication I can be on overall, the better.

I had the perfect doctor for my migraines, and she made all the difference.

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

Sunday, June 17, 2012

High Park Fire Clothing Drive

I have a friend, and his parent's home was completely destroyed by the High Park Fire. This is an ACTUAL photo... it shows you what fire damage is like, when it burns a house to the ground. They lost everything. But in their true, generous natures, they're not worrying about themselves. They're holding a clothing drive for fellow victims of the fire. Some people only got out with the shirts on their backs.

You can send clothing donations directly to:

Little Poudre Family Clinic
3817 W County Road 54G
LaPorte, CO 80535-9360
1 (970) 472-2001

For the next 3 months, all proceeds from sales at my little shop will go directly the clinic, to help with other items. You can buy a sweatshirt, donate that, and know the money from the sales is ALSO going towards the fire! ^_^

#NMAM "Father Knows Best"

Some understand Migraines, some don't. It's Father's Day. Write a letter to your father or the man closest to you, and talk to him about your Migraines. Dear Dad, I don't think I have to explain to you how awful my migraines are. You've been incredibly supportive through this whole process. I know, too, that you understand chronic illness, and how easy it is to find yourself beyond the limits of medical science. You've been there yourself. And I know that you believe in me and my ability to get back on my feet. You wouldn't be rooting for me out here away from home if you didn't. Though we haven't been able to spend a lot of time together, I've loved the time I have received.

You've always been a great role model for me, working so hard to get where you are now. I hope you see how hard I'm working, so you don't have to worry about me anymore. I want you to be able to sleep peacefully at night, knowing your daughter is okay. Better than okay---that I can handle myself even after everything has gone to hell. I want you to know that when the crap hits the fan, I'm going to be fine, regardless.

I know that this is not what you imagined for my life. I know that it took a while for my sister to get it through your head that I was not well enough for all the great things you imagined for me. I know how much of a disappointment this all has been. But I know you're still proud of me, and amazed at the work I've been able to do because of it. You always said I had a gift with words, and now I'm really putting that gift to good use. I know that even though it's not success in the conventional way, you see me as a success.

And it was your words, more than anyone else's, that helped me pick up the pieces after things had gone wrong. "It's not the mistakes we make, it's our recovery from them that counts. It's not what happens to us, it's how we deal with it that matters."

Thanks for being there, Dad...

Your daughter.

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

#NMAM "The Price is Right"

Today's blogging challenge: "What one thing would you do for the Migraine community if money were no issue." Now here's the thing... you say something like "money is no issue" and my fantasies really jump the chain. I'm talking full-scale, rewriting Federal drug policies fantasies. See, I'm all for protecting the children from the ills of mind-altering chemicals, but I think prohibition, especially prohibition at the scientific level, is just silly. We need to know what these compounds do, and put them to use solving the problems of the world, not setting up forbidden fruit that we then have to wage a war over.

For example, right now there aren't that many medications for chronic nausea. And the medications that are out there aren't very safe! Metolopramide drugs like Reglan, for example, could cause a movement disorder known as Tardive Dyskinesia, a difficult-to-treat form of dyskinesia. That's a disorder resulting in involuntary, repetitive body movements. Yikes! Yet we have another nausea medication, that has no known overdose amount---meaning it's impossible to OD on the stuff---and we keep that one illegal because on paper it says their's no medicinal value. It's safe, effective, 100% natural, and at the federal level, completely illegal.

Then there's another drug that works on serotonin transmitters, that could be an absolute breakthrough molecule in the treatment of migraines, depression, and anxiety was taken out of scientists hands in the lab and deemed "no medical value" when, in fact, the problem was that it was too good and fell into the hands of club kids. It was a knee-jerk reaction during the really hard "War on Drugs" phase, and now a molecule we know works is off-hands, while other just-as-dangerous migraine, depression and anxiety meds are allowed to remain on the market.

And don't even get me started on over-the-counter medications (Robitussin anyone?)... That we're allowed to act like adults with some dangerous chemicals, but not others, is just silly. I'd use my endless supply to bring some long-awaited reason back to the table. I'd woo Big Pharma. I'd have the doctors and nurses on board... we'd fix this chaotic mess and get medicine moving on the right track again, free from pressure by the DEA. I would transform that organization into what it should be, a regulatory body that makes sure these folks aren't selling snake oil, and treatment for those who find themselves on the wrong end of addiction. After that, I'd add the resources to the FDA to better ensure safety standards and ensure drug shortages don't happen. All those guys with guns? You now work for other government agencies that need guys with guns.

What would I do with all that money? I'd change the very fabric of this nation.

I don't dream small at all. ;^)

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

Saturday, June 16, 2012

#NMAM Challenge #16: Lead, follow, or get out of the way....

Today's blogging challenge: Lead, follow, or get out of the way.... Which role fits you and why? I see myself kind of as a leader, but more of a coach. I can tell you all sorts of things, but it's your job to put them into play. You also get the credit for scoring points... it's the player that wins the game, not the coach. I want to share my experience, strength, and tenacity (because hope is sometimes a liability). I want to see you be successful in the management of your disease, and all the baggage that comes with it. That's how I score points.

Let's face it... this crap is hard! No matter if you're a leader, follower, or loner, it doesn't matter. This health stuff kicks our ass. If it didn't, we would be here! We'd be up to far different activities if were were disease free. But here we are, so we try to make the best of it we can...

Some people might say I'm a leader. I certainly like being on panels. I don't mind getting up and talking before large crowds. I'm not shy in the limelight. Thing is though, I'd much rather have personal one-on-one interactions with folks. I don't want to be the leader of anything. I'll take a leadership role to help people out with organizing the logistics... but I'd much rather we all be on equal footing. My disease certainly doesn't care if I'm in a leadership position. You shouldn't either.

Each of us has something to contribute with our experience. You don't have to be proud of your migraines. But you can be proud of your ability to get through them. It may seem (at the time) that all we're doing is holding on to a run-away train... That there's nothing we do to be proud of. But the truth is, a lot of people don't even have to deal with going on that ride. That you get up afterwards and face the world, doing your best to brush yourself off from the wreckage you just walked away from... That's a big deal!

You don't have to be a leader to make a difference. The smallest gestures of appreciation and kindness can mean the world to someone else. Even if you see yourself as only a follower, your following means something to those who lead. If you're a leader, that you stood up means something to those who follow. If you're barreling forward on your own course, your efforts break ground and show new, unconventional ways of doing things. Everyone has a place.

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

Friday, June 15, 2012

#NMAM Blogger's Choice: Strange Behavior - The Physiology of Migraine Mood Swings

Migraines are very interesting things because it's an attack on the whole nervous system. Migraine effects the whole body, and included in that is mood and behavior. One friend of mine became apologetic when he got his migraines. He couldn't stop apologizing for himself and thanking people. Beyond my strange cravings (cigarettes---the real kind---not the e-kind, Red Bull, chocolate, super-sugary candies), I have mood swings from here to Egypt. I can get super creative, sexually aggressive, and love the world (also known as hypomania), I can have panic attacks that freeze all decision making, or I can have deep, suicidal depressions. None of this is controllable through medication. I'll explain some of the reasons why.

One of the functions of migraine is that the body loses all serotonin. It loses its supply in the blood, it loses its supply in the brain. Migraineurs (those people who suffer from/survive migraines) just piss it out. It's measurable in the urine.
"Disturbances in serotonin levels are associated with most headaches. In migraines, serotonin levels increase before onset and then decrease during the headache phase. In chronic tension headaches, serotonin levels remain low all the time. As a result of lower serotonin levels, nerve impulses move along the trigeminal nerve to blood vessels in the meninges, the brain's outer covering. This causes blood vessels in the meninges to dilate and become inflamed and swollen. The result is a headache."
- Phyllis A. Balch, CNC, Prescription for Nutritional Healing, 4th Edition: A Practical A-to-Z Reference to Drug-Free Remedies Using Vitamins, Minerals, Herbs & Food Supplements

The initial burst of serotonin causes hypomania and/or panic attacks. There are short-acting drugs for the panic attacks, but no short-acting medications for hypomania. The subsequent lull in serotonin causes the suicidal depressions. There are no short-acting medications for that either. Additionally, drugs like SSRIs are useless. These drugs try to preserve the brains supply of serotonin by preventing re-uptake of serotonin by the cells. But when the brain is dumping it's supply.... That's like putting a lid on a bucket of water to try and keep the water from splashing out, when there's a hole in the bottom of the bucket. Most migraine abortive medications---the class of drugs known as the triptains---are serotonin-like molecules. They stop the migraine by "resupplying" the brain and the blood with molecules that look like serotonin.

Well, that's not exactly true. The triptains stop part of the migraine, but not all of it. Migraine actually starts deep in the brain stem, and "consistent with previous work, the [brainstem] activation persisted after pain was controlled by sumatriptan," one of the triptains (S. K. Afridi1, M. S. Matharu, L. Lee, H. Kaube, K. J. Friston, R. S. J. Frackowiak and P. J. Goadsby, "A PET study exploring the laterality of brainstem activation in migraine using glyceryl trinitrate," Brain, Volume 128, Issue 4, pgs. 932-939). Meaning, the triptains can take the migraine pain away, but that doesn't mean they've taken the migraine away. Which is why a lot of people experience a "rebound" headache (not really a rebound, since it's the same headache!) once the triptain wears off.
[For some of the best articles on migraines out there, see:
PBS Need to Know: Migraine Headaches
Scientific America: Why Migraine Strikes
Science News: Head Agony
If you can understand those, you can understand migraine.]

It's completely normal to expect with all this wacky brain chemistry going off, that besides the pain, there's going to be an emotional component. (Pain, itself, provides its own emotional components, triggering "fight or flight" emotions such as aggression or apologizing.) There are going to be mood swings as there are brain chemical swings. And since all this also kicks off the autonomic nervous system by causing physical stress on the body, the migraineur's ability to handle external stress is taxed. Now add to this that some people's migraines have tripped over into lasting every day... Sometimes for decades (I'm looking at you Kerrie Smyres)... Then emotional stability becomes something of an Olympic sport!

So goes the strange behavior of migraines. It's like mini-bipolar with pain, nausea, and a host of other symptoms (including, sometimes, loss of language skills and balance). Fun times! @.@

So What Do We Do About It?

First, we have to practice detachment, and remember that feelings are not facts. Just because I feel up or down, doesn't necessarily mean anything more than a brain malfunction. I need to measure the situation against reality and see if things check out. And even if they do check out, that doesn't then mean I get to go running down the field with my emotions. It means I think about the best possible outcome for the situation and taking aim for that. Have I a right to be angry? Sometimes, absolutely! But that doesn't mean it's a good idea for me to get angry; that has negative, physical side effects, plus it clouds my vision to opportunities---they're harder to see when I'm angry and it's easier to slip into self-pity.

We've got to practice positive thinking, daily, to stay strong. I'm not talking Pollyanna-type, sun-shiney, sugary sweet, bullcrap. I'm talking real soul-searching, find the good in this (even if you have to dig a mile down for that diamond) type positive thinking. One: Remember that your suffering can be used to help other people with their suffering. Two: Recognize that you are a survivor, even though you were drafted and didn't have a choice in the matter. Three: Recognize that you are learning to manage something that no one would choose for themselves; this isn't extreme-sports, weekends-only heroics---this is the real deal. Four: We have a unique wisdom about the frailty of human bodies, human minds, human promises, human technologies, and human institutions; we can appreciate when things work, that much more. Five: We have a unique ability to be there for other people like us (there is an understanding---a kinship). These are just a few automatic wins. These are the thoughts we can repeat to ourselves in the dark times so that the suicidal depressions don't end up in suicide. These are some of the reasons we have value as human beings, despite being sick. We have these values as a result of being sick!

Next, we need to use these values to re-frame or thinking about ourselves. We aren't just patients, we're healers, too---healing the hearts of others like us. We're not alone in our suffering, though it may be lonely and isolating. We're diplomats, extending the welcome to others with conditions like ours. We're educators, informing the public of scientific, medical, and political matters. We're activists, raising awareness for people with our condition. We're researchers, spending countless hours on the internet looking up patient information. We're project managers, administrating the near full-time job of records, medications, symptom-tracking, billing, insurance claims, etc., etc. We may be a miserable pile of pain-ridden goo, but we are at the same time, absolutely amazing. Our diseases may limit what we can do, but it doesn't limit who we are.

It's easy for us to lose sight of our worth, especially when migraines are so crippling. So remind yourself of your value from time to time. Be kind and forgiving towards yourself, like you would a sick child. Comfort, but don't spoil. We must be careful today to make a good tomorrow. We must forgive ourselves when we fall short. We must try when we have the strength and rest when we do not. Additionally, don't think that you lose worth from being sick. Our disease is nothing to be ashamed of, period. I don't care if you have migraines from a self-induced head injury. No one says, "Race you to the first neurologist's visit!" It's not the mistakes we make, it's our recovery from them that counts. That we're walking the road of dealing with a chronic illness has merit in itself, regardless of source.

Practicing these thought exercises helps shore up our emotions, so when those big depressive storms come, we can remind ourselves of the good things, and hold on until the storm passes.

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

Wednesday, June 13, 2012

#NMAM Love letter to yourself

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.

Dearest Pamela---

When I looked into your eyes, I was struck like lightning from a blessed rain. What a beautiful soul! I had to stop my day for you. Everything else could wait for a little bit. You were a stranger, and all I had was this moment. I stayed to watch you, as long as I could dare. I was delighted for the chance to speak to you, even for something so simple. I wished you a good day when I left, just to see those eyes.

You've known pain that others cannot have imagined. You've known days of darkness few have known. You got through them. That much is clear in your eyes. Let that pain slip from your shoulders now, like the shedding of old skin. The days of your bewilderment are over. You understand it now. You have the tools to master it. You have mastered it. Though we live through hard times, those times teach us. Yours is a soul forged in fire. You ride the pain, now. It carries you forward.

You are a woman, reborn, with a strength few can match. You have found wisdom that few will ever know. Let there be tenderness now, between us. Let me soothe the loneliness that's been there so long. You are not alone; I would know you, for the beautiful woman you are now: storms, darkness and all.


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

Tuesday, June 12, 2012

#NMAM Monster mash - Hyde Park fire

Tonight's post was supposed to compare my migraines to a monster movie. Only two problems. One, I don't like monster movies. Two, the smoke from the Hyde Park fire around Fort Collins has finally triggered a migraine. The smell is terrible...nothing like a campfire. So I'm going to go to bed early tonight! In the meantime, my problems are small. Prayers/Juju/Reiki/Healing energy are welcomed for those dealing with the fire.

Who needs imaginary monsters, when there are real ones?

Monday, June 11, 2012

#NMAM "Say what?!"

This one ended my marriage. For today's migraine awareness posts, I'm asked: What's the most ridiculous thing ever said to you about Migraines, who said it, and under what circumstances? I was standing in the bedroom, my husband was laying in bed. I asked him if he'd like to get frisky. We hadn't had sex in almost six months. He told me, "I know this sounds irrational... but I'm afraid if I sleep with you, I'll catch your migraines." Um... riiiiiiiiiiiiiiiiiiiiight. It was at that moment I realized, "This man is abusing me."

My husband had been wonderfully supportive before we got married, even taking off 3 weeks from work to see me through my early hospital visits. He would ask doctors questions to ensure I got the best care there and at home. He was wonderful. That's part of why I married him. But after he got a ring on my finger, all that changed. He couldn't be bothered to help me with doctors. He'd make me feel guilty for having to go to the ER. There was one point where an ER doctor was threatening to send me 5150 ("a danger to myself or others" - a free pass to the loonie bin) because I was "carrying on too much," when I was screaming from the migraine pain. My husband was sitting next to me doing nothing. I couldn't look at him because the pain was so bad, so I just asked, "[Husband], what are you doing?!?!" I didn't get sent to psych. I did get some medicine. I also got a divorce.

I didn't file for divorce immediately. For one, I wanted to hang in there and see if we could work our problems out. We went to marriage counseling, but he refused to do any of the things we agreed upon in the sessions. It wasn't until December of that same year that his father pulled me aside and said, "I think my son has the same depression I had." I talked to my husband, and he agreed. But he refused to get treatment for it. He refused to cooperate with anything I suggested. Shortly after that comment, "I'm afraid I'll catch your migraines..." I asked him if we was even willing to take part in our marriage. He said no. That's when I filed.

When my lawyer asked me why I was getting a divorce, I told him that line. Lawyers don't shock easily. They've seen every nasty couple fight under the sun---real Jerry Springer stuff. But even he was taken aback by that one. "He said that?" my lawyer asked, unbelieving. I only nodded. "Well, then. Let's get you divorced!"

People can be so mean.

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

Sunday, June 10, 2012

#NMAM Name the Spokesperson

Choose any celebrity to represent Migraine (whether they have Migraine or not) who would it be and why? I'd want Jon Stewart, and not for him to get migraines... just for him to be the spokes-celebrity for migraines. That way, if I ever get to do a book tour, it would only be logical that I get interviewed by that guy. Plus, you know when Jon Stewart gets serious about an issue, people take notice. If he were to be the celebrity for migraines, just think of the kind of outreach he could have!

Mostly, it's that I want to be interviewed by him. Why? Because I think he's the one to spread the message about how important humor is to folks with chronic illness, and folks who experience chronic pain. If there was a day I could laugh, it was a win. If I could find a way to crack a joke about a terrible situation, that made me a survivor, not a victim. Where pain is soul-stealing, laughter is life-giving. Any time that I could find a moment to laugh was a moment of freedom from the awful seriousness of my condition. Humor was a reminder there was still good in the world, even for me. That there was nothing so terrible that a good laugh couldn't help. Mind you, sometimes the mirth was better experienced internally...breathing is important. But I've never not wanted that joy.

Jon Stewart also covers matters seriously when they're deserving over seriousness, so I also know he'd handle this topic with a great deal of sensitivity and diplomacy, as well. Plus, I think he'd be floored by the statistics. I think it would give him, and the rest of the world, a whole new understanding of the health care debate. His reactions would be absolutely delicious! He's one of those people who is properly expressive when impressed (at least in the world according to me). He'd be able to give the topic of migraines it's proper due.

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

Saturday, June 9, 2012

#NMAM "Day Dream Believer"

Today's blogging challenge for migraine awareness is: Describe your dream day, without a migraine to hold you back. Before we start, let me tell you that I hate this exercise. I don't want to think of how my life would be without migraines. All that's going to do is remind me how much my life is not how I want it. I can't be encouraging feelings of envy like that! I've got to deal with life how is is, not life how it isn't. And life how it is, is difficult enough!

I wanted to grow up, graduate from college, settle into a nice career, get married, have children and raise a family. A simple, accomplishable dream, right? Apparently that was too big of a dream for me. I was able to graduate from college, but I had to switch my major when in the middle of my sophomore year. My studies got interrupted by a ruptured cyst on my ovary. In my Junior year, I caught a series of sinus infections and flus that had me bedridden for months. The only thing that saved me from having to drop out was that I had switched to and English major that wasn't dependent on attending class every day. (My grade was determined by two papers---one at midterms and one at finals. That left a lot of time for me to baby myself and get through.)

I settled into a nice career: I was able to join my English major with a love of computers and become a technical writer. It made good money, and it included a lot of contract work, where I could take off time to raise a family, and not have my income hurt too badly when I decided to return to the workforce. Except that I started getting sicker and sicker. Getting to work from 9 to 5 was becoming impossible. I had companies who would allow me a flexible schedule, but I had to stop working when the migraine went to an every-day ordeal (despite all medical interventions).

I thought I had found a nice man to marry---my college sweetheart. Sure, things hadn't worked out when we were kids, but we were adults now with new perspectives. He'd become a responsible Navy man, like my father. I'd realized that I'd lost a good thing when I had it. We decided to get married, but that was also right when my illness made me unable to work. All our wedding plans got thrown into disarray. We ended up canceling the whole thing, because I just couldn't manage... anything. All of our money was going towards my medical bills, and we still weren't getting any answers. I didn't want to remember my marriage as the time I was sick, and we both thought I could get better. We figured it had to be soon. I'd already been through 9 months... surely a migraine couldn't go on longer than that! But we were wrong.

It soon became apparent that I wasn't getting better. The money was running out. I would need his insurance and income, so we ended up eloping. No white dress... no friends and family... we had to borrow our witnesses from the next camp over---strangers to us, who were going to attest that these two people should get married. Yeah... that should have been a sign. But I was too sick to really pay attention to any omens that didn't involve my own body. The marriage didn't last long, as he quickly discovered he didn't really mean the "in sickness" part of our vows.

I dealt with the divorce, and my lawyer mentions how it's a good thing I don't have kids. I knew he meant with my ex..., but I still had to fight back the tears because I was wrestling with the reality that I could never have kids. That was the one thing I had wanted since I was a little girl: I wanted to be a mom. But my disease was having none of it. We had tried for a year to get pregnant, and I never even got so much as a close call. Turns out that my body doesn't even know that's supposed to be a normal part of a girl's life. The tests later confirmed it.

So I have a really hard time trying to dream up a perfect day. I thought I was dreaming up a normal, pedestrian, average life. Nothing too grandiose... I didn't need trips to Paris and Rome. I just needed my little corner of the world and a family to love. Maybe that's where I went wrong. I didn't dream big enough! Maybe I should have wanted the most extravagant lifestyle with lots of money and power, and little responsibility. Perhaps then I would have been "saddled" with a simple life.

My dreams have to include my illness. When I think of a future me, I have to imagine that it includes my disease, and that I have somehow figured out how to manage it. I simply must include my limitations in my fantasies, otherwise I'm aiming for a part of the map I can never reach. (You can't get 'thar' from here!) If I want to be able to believe in my dreams, it has to take reality into account. Otherwise, I may as well dream I'm an elven princess in a Tolkien paradise, with a life span of thousands of years and nary an illness to worry my pretty heart.

If I want to be a "Day Dream Believer," I have to include the pain and suffering. But I can dream that I'm able to get through the pain and suffering, gracefully, nobly, and perhaps even joyfully---experiencing pain, but able to laugh with a free heart anyway, knowing that the pain will pass and life will soon be sweet again. Having friends and family around me who are fully supportive, helping me to rise above the pain and live life to the fullest despite it. That would be a perfect day, indeed.

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

Friday, June 8, 2012

#NMAM "Let there be light."

Today's blogging challenge: Most Migraineurs have issues with light sensitivity. What do you do to cope with it? Avoidance, avoidance, avoidance. It's that simple. When the light hurts, I avoid it. I wear sunglasses (sometimes multiple pairs at once). I use a face mask. I put my leather jacket over my head. I put a hand up to block the lights of oncoming traffic. I make the light go away every way that I have at my disposal.

I refuse to use "energy efficient" bulbs, because they're one of the worst frequencies of light for migraine sufferers. I've gotten to be a pro at walking around in the dark, especially not putting my foot down on something that could hurt, or be hurt (like my cat). I've memorized the distinct sounds my pills make, so that I can tell what bottle I've got in my hands, without reading the label. (I do read the bottle before taking the pill, but it helps when I only have to open my eyes once.)

I've set my computer and phone to the lowest brightness available. If I need a flashlight, I use my phone screen instead of an actual flashlight, because the low setting is just perfect to reflect only the smallest amount of light needed to see where I'm going. I've placed a piece of electrical tape across the LED lights of my computer, because they're bright enough to bother my migraines (from the other room!) when all the other lights are turned off.

In one of my apartments, I even boarded up the window in the bathroom to keep light from getting in. The bathroom was the place I spent most of my time with a migraine---either because I had to hug the toilet, or because I had to sit in the shower and have the falling water distract me from the pain in my head. Light in the bathroom was not a good thing, and a window was a source of light, even at night. Solid wood boards covering the window did the trick.

How do I cope with light sensitivity? Any way I can...

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

Thursday, June 7, 2012

#NMAM List topper

There are lots of myths and misconceptions about Migraine. Which one tops your list as the biggest and most common? What can we do to get the truth out there? My list topper? "It's just a headache." No... it is FAR from "just a headache." It's a neurological malfunction that disrupts the entire function of the brain and body, causes violent mood swings that cannot be corrected with medication (yet), and disrupts function in some of our most basic functions like the ability to form words. A headache will not cause half your body to become paralyzed, or make the muscles in your face contort so much that your own father can't recognize you. A true story, which I'll tell you now...

The migraine that left me so disfigured that my own father couldn't recognize me was a doozy of I migraine I had as a result of plane travel. Changes in atmospheric pressure is a big trigger for me. Usually, the change in weather is enough of a shift in atmospheric pressure to trigger a migraine. A ride in an airplane is a guaranteed trip to migraine hell. This plane trip was even worse, because it wasn't a non-stop flight. My head would get pressurized and depressurized, twice. To get the weather equivalent, I would have to go through the eye of a hurricane. The migraine that erupted in my head felt like a hurricane in my skull. The pain hit me after the first depressurization, and I had to be transported by wheel chair to my next flight.

When I reached my final destination, they had a wheelchair waiting for me. Apparently I was bad off enough that the flight called ahead. I was grateful for that kindness. They wheeled me to baggage claim, where I was able to crack my eyes, long enough to catch sight of my father. He was looking all around for me. I waved to him. He didn't see me. I turned to the gentleman who was pushing the wheelchair and pointed at my father. He wheeled me over. I saw the horror on my father's face as he realized it was his daughter in the wheelchair. The double-take he did when I looked up at him told me it was bad. "I couldn't even recognize you, your face was so twisted up," he told me later. I wasn't doing the twisting. It wasn't contortions of agony that had changed my appearance... No... The migraine itself had changed my face.

To this day, I have what my father refers to as my "pain wrinkle." It's an old scar on my forehead that starts to pucker up and become more noticeable, every time I start to get a migraine. He can tell, sometime before me, when a migraine is going to show up, based on that wrinkle appearing.

"Just a headache" won't do that.

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

Wednesday, June 6, 2012

#NMAM Name That Tune! - You get what you give

For today's migraine awareness challenge, I'm to "choose a theme song for Migraine disease or your headache disorder. See if you can find a YouTube video of it for your blog post." I always have the hardest time picking songs that have to do with my illnesses. Music is my escape, my way to forget everything that's going on around me, and just get lost in the flow of the harmonies and rhythm. Migraines took one of my favorite activities from me: clubbing. So to give my migraines or my disease a song is almost... unholy. I turned to my friends for suggestions, but still got stuck. That was, until I put in a CD I created when I was in the midst of my migraines... my song is "Get What You Give," by the New Radicals.

Here are some of the lyrics:
But when the night is falling
You cannot find the light, light
You feel your dreams are dying
Hold tight

You've got the music in you
Don't let go
You've got the music in you
One dance left
This world is gonna pull through
Don't give up
You've got a reason to live
Can't forget
We only get what we give
To say that my migraines have made me want to give up on life is an understatement. I cannot tell you how many times I have just dreamed of it being OVER. No more worrying, no more trying to hold on, no more sitting, curled up in the bottom of the tub, World War V playing out in my head, wondering how there can be so much pain in the world. Surely, no one has done anything bad enough to deserve this, and I'm no where near the level of a mass-murderer, so why does it have to be me that hurts like this? Such questions would no longer beg for an answer. I'd be gone, and there'd be no more to it. But then these lyrics come through...
You feel your tree is breaking
Just then
You've got the music in you
Don't let go
You've got the music in you...
My migraines disabled me. They stole a decade of my life, and took away even my most basic abilities to take care of myself. I've felt worse than worthless... I've felt like a drain and a detriment to those around me. And yet, when I put in this song, even if I'm screaming the lyrics through clenched teeth with tears streaming down my face, somehow, the message still get through...
Don't give up
You've got a reason to live...
I didn't know what my reason for living was at that point. I knew it had to be for more than just suffering. But I also knew that if I gave up, I'd never be able to find out what that reason was. I knew that if I didn't ride out the dark times, I'd never make it to the light.
"Fly high
What's real can't die
You only get what you give
You gonna get what you give
Just don't be afraid to live"
I got this email the other day and it just broke my heart. "How do you do it? I can barely walk. My thighs won't stop hurting. My hip joints won't stop hurting. The NSAIDs only dull the pain, and they tear my tummy and intestines up. Nauseated and cramped. Can't sleep. Loopy and head-achey from lack of sleep. Can't concentrate. Moods swinging in spite of my lithium and zonisamide. Just want to cry. How do you f***ing do it?"

Let me tell you, some days, I don't. Some days, I do end up a horrible lump of screaming worthlessness. I can do nothing except concentrated on treating one wave of symptoms after the next. The whole world disappears from around me and all I have is my symptoms. There is no quality of life. Life is hell and the best thing I can do is get through. Simple tasks that other people take for granted become nightmare situations. Trying to get from where I am to the bathroom and back is like mountain climbing. Standing on my feet, long enough to feed myself, is like withstanding a prize-fighter cage-match. There's nothing graceful about it. I just try to keep going... white-knuckling my way through the minutes, one after painful other, until I feel better. Sometimes, it's more minutes than I think I can handle. But I keep going, regardless of what I think. I hung on for the last 60 seconds... I can hang on for this next 60 seconds. Repeat, repeat, repeat.
Don't give up
You've got a reason to live...
Chronic pain is soul-stealing. I can't tell you how much I've cried over everything I've lost. I can't tell you how much I've cried about the bitterness of the wisdom I've gained. There shouldn't be this much pain in the world. It shouldn't be able to last so long. And it breaks my heart that I have this in common with anyone else.


If my suffering can be of some good... If my suffering can help ease the suffering of someone else... If I can be there for a friend who feels lost, or for a stranger who feels alone... that's a good thing right?
Don't let go
One dance left
Don't give up
Can't forget
I've got a reason to live.

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

Tuesday, June 5, 2012

#NMAM Do That To Me One More Time.

Red Bull flatsWhat 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? [This is not an endorsement. Your Mileage May Vary (YMMV).] I love Red Bull. When I have a migraine, that's one of the first things I'll reach for, even before I reach for medication. The combination of caffeine, sugar, B-vitamins and taurine seems to be the perfect combination. I've even noticed that when I'm not having a migraine, Red Bull doesn't taste as good. When I'm in migraine pain, it's nectar of the Gods.

I only got into drinking energy drinks because of my migraines. I remember an ex-boyfriend used to love them and would drink that instead of coffee in the morning. I couldn't see the appeal. I had drunk Mt. Dew by the 2-liter in college, and got to the point where all it would do is make my stomach upset. This just looked like another version of Mt. Dew. No big deal, right?

Oh, how I was wrong! I tried one when I was in pain, on the suggestion of a friend, and WOW. The moment I tasted it, I knew it had something my body was craving. And despite it's name as a so-called "energy drink," when I'm in migraine pain, I can drink one and go to sleep, no problem. Migraine pain doesn't seem to know what stimulants are. So no real drawback there! (Okay, it is expensive... I'll grant you that. Buying bulk and having access to those discount superstore

Since that day, I've been a loyal fan.

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

Monday, June 4, 2012

#NMAM June Is Bustin' Out All Over!

What's the best tip you can offer others for having some summer fun despite Migraines? Be prepared! Pace yourself! Always know where your sunglasses are. Keep a small balanced snack with you in case of delays. Carry your medication with you. If you have problems thinking or communicating with your migraines, have a card that explains what you need, that you can give to others if you're not thinking well. Stay hydrated, but don't forget your salts and electrolytes! Emergency, disposable ice packs are amazing. A microwavable rice sock is good for heat-relieving muscle tension. Ear plugs are good for noisy restaurants, and movie theaters that think louder means more exciting. Know thyself, and prepare.

For the longest time, I couldn't enjoy summer. The light, the heat... even if the weather was nice out, the day-star made me feel like a vampire. It's awful driving down streets where the trees cast shadows across the road, and the sun flickers in and out of my vision like a strobe light. The WORST is being stuck behind that guy with the perfectly reflective rear window, so that it's always like your staring into the sun. Can't take your eyes off the road, so you can't shield yourself from the mirrory-car-of-DOOM. Agony!

Summer nights are wonderful... if they get cool enough. Some places are so miserable that at night all it does it get dark. I remember living in the Mojave desert. My mother told me to take a cold shower, an old trick from when I lived in the Midwest, the days back before we had air conditioning. I had to inform my mother that in the desert, even when it's piped in from underground, "The water doesn't get cold, mom..." During the day, it would be 120*F (easily), and the wind that blew off the desert was hotter. There was a small window of time between 3 and 4 in the morning when it would actually get cool. Those were the only times to exercise or do any vigorous activity. And you could feel the heat of the sun before it started to get light out. It would come off the desert in waves.

In contrast, with a migraine, I'd happily freeze to death. I've walked through below-freezing temperatures, wind chapping my face, body bundled and head bare, relief spreading over me as the cold put the pain to sleep. In the cold, the migraine pain can't grip tightly. It tries, but the cold won't let it. The pain falls prey to the numbing effects, and it doesn't hurt as much. In the summer, it's difficult to find such an environment unless you have access to a walk-in freezer. The cold isle in the supermarket is a close second.

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

Sunday, June 3, 2012

#NMAM Just shoot me now!

What's your worst Migraine trigger? Can you avoid it? How do you handle it? Huge weather fluctuations do me in. They're the worst... Huge. Inescapable Acts of Nature. Being a human barometer sucks, let me tell you. What did I do about it? I moved across country, to a higher elevation---Denver. I get botox every three months. I follow a sleep schedule as best I can. I pace my eating, and don't let myself get too hungry, or overeat. I balance carbohydrates and protein, and get my vitamins. I exercise regularly, using slow, paced exercises that don't make my blood pressure spike or fall rapidly. I have reshaped my entire life to beat this beast back down into it's rightful place of a slight, occasional annoyance. Every once in a while it's okay to be reminded: I'm a fragile human being.

I have one of those large back massagers (a dual headed vibrator) that I use on my head and shoulders. I have stretching exercises to help the muscle tension that builds up in response to my head pain. I have two medicated creams for my hands and feet for when the migraines make the neuropathy flare. I have medications galore that keep me in balance, and help off-set the break-through episodes. I have mantras that I tell myself to help me keep the faith, and keep pressing on, despite what my head is doing. For when it gets really bad, I have darkness and cold. And in worst-case scenarios, I have the ER. (Thankfully, my migraines have only required one ER trip in the last 5 years, or so.)

Now that I'm getting healthier, I'm also cooking from scratch a lot more, which I have noticed had had a huge impact on my feeling better. There's the sense of accomplishment in pulling off a fantastic meal, I can do some of my physical therapy while at the stove, and there aren't all the additives that come with manufactured food. Granted, there are some good foods you can buy off the shelf (Stouffer's is all natural, and they make an awesome mac & cheese), but they're a lot more expensive than cooking at home. Good in a pinch, but it does pinch the wallet. Fruits and Veggies I'll buy frozen, because they're frozen at peak ripeness. But learning how to make my own caramel and ice cream has been a wonderful time. Soon, I'll tackle more breads! (They're tricky at elevation!)

Mostly, the move has helped me. And when I visit places at sea level, the increased oxygen allows me to do well there, for just long enough to complete business trips and short vacations. When barometric pressure changes are what get you, go to where the swings in change aren't as drastic!

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

Saturday, June 2, 2012

#NMAM Tea for Two

If you could invite someone (any living person) to your home for tea for the purpose of explaining Migraine disease to them so they would truly understand it, who would it be and why? I would bring my first GP from University of Washington Physicians, Dr. Ramses. He completely doubted me, and when I finally brought my mother in, he explained he was trying to push me off with mostly harmless medications because he thought I was manifesting these migraines as a tactic to get attention from my multiple boyfriends. How disgustingly rude is that?

Turns out, if he had just run the tests I asked him to run, he would have seen that my immune system was attacking my pituitary, and that my migraines were a result of that furious attack! If he would have stuck around to see me go through the Occipital Nerve Stimulator study, he would have learned that I can hold a steady conversation with 20 milliamps of current directly to my nerves. Why? My migraines shot way past 20 milliamps of pain.

The Occipital Nerve Stimulator (ONS) was an implanted bionic device, used to treat chronic, recalcitrant migraines. Chronic means more than 15 days per month (mine were daily). Recalcitrant means difficult to treat (I had been on every medication known to man, and through every treatment short of cutting nerves). The ONS was surgically implanted. The device sat above my left hip (in the butt), and two wires led from it, up my spine, to the base of my skull, where the Occipital nerves are.

After they implanted the device, they had to program it. They would turn the machine on, and then I would tell them what I wanted the maximum setting to be. It felt like the same uncomfortable, buzzing sensation you get when you hit your funny bone. You'll notice that after you "hit your funny bone" it's difficult to feel your hand or get it to move. This was the same principle for stopping the migraines. Send enough static nerve noise down the line and then the migraines can't generate. It also helped stop a migraine in process, when used over time. I had a really bad migraine when they were programming the device, so I figured that was good fortune in a way. They sat me in a dark room and turned the device on.

"Now let me know when it's feeling liek too much and you want me to stop."

"Okay... Keep going... Keep going..."

"Are you sure that's okay?" she asked very nervously.

"Oh yeah, this migraine is killing me. Keep going... Keep going.... No I'm serious, you can go a lot higher than that..."

"I'm sorry," she whispered. "It doesn't go any higher."

I didn't understand why she was so impressed until later. Most of the people in the study used the device between 4 and 8. I was the only person to use it at 20. My migarines could go higher than that. And they couldn't legally go any higher than that because it starts to damage the nerves.

I am a freak of nature when it comes to pain tolerance, and a freak for the amount of pain I can generation in my own body. It's amazing. Inhuman. It is through ignorance alone, of exactly how bad it was going to be, that allowed me to suffer through it. Four and a half years of freaky levels of pain. And here I still stand.

I want to invite my first GP over for tea.... a big old heaping pile of crow, and a beautifully decorated slice of humble pie. I'll show him the videos of the study sessions, where they adjusted the device, to prove to him just how awesome my pain tolerance is. The napkins will be embroidered with: I TOLD YOU I WAS SICK!

(*lol* Dream big!)

I had the device in for a few years past the completion of the study. After it was able to stop my 4.5 year migraine, I was able to treat with pills again, and those were much more gentle than the device. Plus, I ran into some user difficulties because the device wasn't designed to run at 20. The way it worked was there was a battery that you charged, and then you held that battery up to the device, and it recharged the device. They included little sticky plates and an even a belt, because recharging the device took a long time. Then, recharging the recharging battery took a long time too. They had to give me two batteries, because I ran the device so high. I would have the device on, I would have it charging, and I would have a second recharging battery charging. The second one of the recharging devices was done, I would swap it out with the other battery. I had to keep a near constant flow of charge to the device to keep it running at a level where it worked. It was like I was plugged into a wall. That's no way to live! So when it finally got to the point where I could use medication safely and effectively again, I switched back to that.

The device also made it impossible for me to get MRIs, and with my pituitary disease, that wasn't a good combination. So a few years ago, I had it removed. And since moving to a higher elevation, the severity and frequency of my migraines has significantly decreased. You couldn't even call them chronic anymore.

Yes, I've been a bionic woman. Pretty cool, huh?

Friday, June 1, 2012

#NMAM My First Migraine [repost]

[This is a repost for the June Migraine Blog Event: National Migraine Awareness Month (#NMAM).] Ellen Schnakenberg of posted an interesting migraine fact the other day: Most migraineurs have vivid memories of our first migraine. "It's a shocking occurrance. Our lives change in an instant," she says. For me it was the same. And when I saw her comment, the flood of memories swallowed me whole.

It was 1987 and my parents had taken us on a historical tour of half a dozen southern U.S. states, following a carefully mapped trail my father had made to show us Civil War landmarks along the way. Part of out vacation was a weekend in New Orleans. I remember it was the night my Dad wanted to see the blues bands play. Everyone was excited. Unfortunately, my father insisted on going into the clubs, even though the music was so loud on the street you had to shout to hear.

It wasn't even ten minutes of standing in that noise that I couldn't bear it anymore. My head was pounding. I wasn't surprised. I didn't think it unusual. But we migraineurs don't tend to think well when we have a migraine, and this was no exception for me either. What I didn't realize was I was a teenager complaining to my parents that their music was too loud. Yeah... that should have been my first clue.

On the way back to our hotel, lights got too bright for me even though it was night on the street. I closed my eyes and had my parents lead my by the arm. When they would tell me of an obstacle, I'd open my eyes briefly to move over or around it, then back to voluntary blindness.

When we made it back to the hotel room, my mother, unfortunately decided to put on perfume. The smell doubled me over in nausea. They opened the windows to air the room out, but it permeated everywhere. I wanted to hide under the covers from the smell and the light, but the heat of the blankets made the nausea worse and everything was off balance. She washed it off, but it was no help.

By that point, I also had a pillow wrapped around my head because normal conversation-level talking sounded like cannon blasts. Thankfully, it wasn't much later I was able to pass out.

I was 15.