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 www.FightingHeadacheDisorders.com."

#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 www.FightingHeadacheDisorders.com."

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 www.FightingHeadacheDisorders.com."

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 www.FightingHeadacheDisorders.com."

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.

Yours...

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

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 www.FightingHeadacheDisorders.com."

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 www.FightingHeadacheDisorders.com."