#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 www.FightingHeadacheDisorders.com."

#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 www.FightingHeadacheDisorders.com."

#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 www.FightingHeadacheDisorders.com."

#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 www.FightingHeadacheDisorders.com."

#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 www.FightingHeadacheDisorders.com."

#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 www.FightingHeadacheDisorders.com."

#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 www.FightingHeadacheDisorders.com."

#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 www.FightingHeadacheDisorders.com."

#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 www.FightingHeadacheDisorders.com."