Miracles! Biofeedback Heart Rate Coherence & the No Fiber Diet

Let's start with the disclaimer: The Biofeedback Heart Rate Coherence has been recommended by my doctor, and he is monitoring my progress. The no fiber diet is something upon which I have embarked myself, from the suggestion of other patients.

Biofeedback

Let's be real. If you haven't seen the latest in #Biofeedback, you are missing out. I originally did biofeedback for relaxation & pain back in the '00 and I was not impressed. I could relax myself to amazing levels and it had no effect on my pain.

However, now there's...

Heart Rate Coherence

This shiznit blows my mind. I was completely skeptical given my previous experience, but WOW! have there been advancements. There's a whole protocol for breathing to bring the heart and breath into synchronization. Yeah, it sounds like some hippy dippy stuff, but I'll be damned if it didn't work!

Here's what happened: I'm using the (#nonspon) www.heartrateplus.com app (the pro version) for 20 minutes a day twice a day. I came back from my doctor's last night to do my first session at home. I was in terrible pain and was having so much difficult walking, I was bedridden. So I figured, now's a good time to try...

After 20 minutes, not only was I in less pain, but I was in SO much less pain that I was able to get back on my feet immediately (impossible with just rest) and stay on my feet long enough to cook an actual meal! That's an absolute miracle, folks. YMMV, but I highly recommend this app for anyone dealing with chronic pain and pain flares.

No Fiber Diet

I've had long-running problems with my digestion, and like most of you, I've done everything under the sun as far as elimination diets and so forth. But it's gotten bad with me. The nausea and gut pain have been so terrible, that even with some medication helping (cannabis), I've slowly shrunk down to 120 lbs, fifteen pounds lighter than my skinniest weight when I was dying and a full 25 pounds lower than a healthy weight for my height. I am skin and bones, and I was required to add potassium supplements because my digestion was so bad. That is NOT normal for adrenal insufficiency AT ALL. Normally you should avoid potassium with my disease. But I wasn't able to eat enough to keep my levels up.

Enter in Dr. Paul Mason, gut researcher in Australia: Effect of Reducing Dietary Fiber



I knew that fruits and vegetables were difficult for me to digest and would make me sick (especially fruit), and had pretty much eliminated them from my diet. However, I've also always thought that meat was difficult for mer to digest, and had been avoiding that as well. I was living mainly on grains and dairy. Well... looks like the grain was a bad idea.

So now I'm embarking on a No Fiber Diet, eliminating grains, nuts, seeds... Pretty much a carnivore diet, with dairy, sugar and spices allowed. Yes, this is a protocol I have made for myself, but based on research. I'm eating ground lamb, grass-fed ground beef, open-air-free-range eggs (eggs have historically been horrible for me, only to be eaten sparingly), young & cottage cheese (to avoid migraine triggers), nitrate-free bacon/salami, Greek yogurt, butter, milk, carbonated water, and my trademark Red Bull.

I'm on day 4 and my discoveries have been this:

1. I can digest meat! So far, so good.
2. Eggs, when thoroughly cooked, can be eaten daily!
3. My appetite is back!!!!

That last one is the biggest... I haven't felt hungry in years, despite the anti-nausea medication, and that is just amazing. My body feels like it wants to live again, and that... well... I'm not big praising something on scant initial results, but the results have been so beyond what I even though possible, I'm calling it now: these are miraculous improvements.

Dare I have hope again? We shall see...

My Wish for Doctors

If I had to give one sentence to a doctor about who I am it would be: "I'm going to work anyway so you may as well help me get paid for it." That is my purpose in searching for healthcare. I just don't understand people who say, "It must be nice to to have to work." You know, forget that chronic pain is awful, forget how frustrated I get with my body throwing wrenches into my plans. I am a writer, and this blog is proof I'm going to do what gives me the most fulfillment no matter how much I'm tortured. Since my contributions can still help others, then doesn't it make sense to give me the tools so I can?

The Internet is a godsend to someone like me. Not only can I get research from around the world, translated by others into my native language and vice versa is the greatest revolution of all time. It used to take centuries to send an idea around the world, now it takes as long as your download speed. In this kind of world, I want to use my powers for good. I don't want to dull my falculties or my ability to think, that's how I make my money! I can't be blotto and get things done. My job requires that I am able to learn complex complicated computer processes and then explain them to others so they can get their work done. It's called technical writing and I love it.

On my job, I get to work with really smart people, people far smarter than me. They're doing the cutting edge work, and I get to learn about it from them, in person. I get to ask them all sorts of stupid questions, while not lookind stupid doing it, because if I have questions, the reader will have questions. It's the equivalent of getting the exclusive first interview with the creator of the latest whiz-bang technology. I get to be the first fan, the alpha follower, the ultimate technology hipster.

Then I get to take their brilliance and translate it within English to audiences of all kinds. It's an amazing stage on which I get to perform. Yeah, the audience isn't vast, but that's not the point. I don't need to be famous. There are a whole lot of other, more brilliant minds who deserve it much more than me. I stand on the shoulders of giants. It gives me a great view.

This probably explains why I can write fiction very well. I'd much rather explain and inform than entertain. A story is a puff of smoke. Technical writing is explaining how the magic is made. The second is much more useful. You can build a house on truth. You can't walk on smoke. Fun is fun, but I can make my own fun easily, regardless of my pain level. In fact, sometimes the greater my pain, the more amazing my sense of humor. Sometimes things get so absurdly serious, they become seriously absurd. You laugh or else.

Cops make lousy doctors and doctors make lousy cops. Ask amy employee at the dispensaries in Colorado and they'll tell you it was easy to tell the real medical patients from the ones who just wanted to get high. For one thing, sick people go through tons more medication becuase they're fighting an uphill battle. One dispensary I used to frequent even changed their prices on a perticular strain, because they noticed only their medical patients bought it (back before recreational pot was legalized there). It went to top shelf prices to discounted below bottom shelf. I used to take concentrated pills of the strain, and it was amazing for body pain. It's high in CBDs and is recognized as such a good medicine, even Missouri has legalized it.

I wish doctors had the same freedom to say, "Okay, so your an addict... That's normal for 1.3% of the population. We know that it's a medical and psychological problem. There's no need to be ashamed, here's how we can help you recover." And then people with real pain problems can go, "Doc, I hurt!" And the doctor can know to take it as a serious medical clue, rather than a trait to be doubted

Wouldn't that make this a better world for everyone?

Verifiable Neuropathy Symptom

Quick update: #goodnews! Thanks to a very observant medical student in the ER this morning, I finally have the doctors takig my small fiber neuropathy serieously. This student discovered I have a rare, easily-observed symptom, and one that NO ONE can fake! Even though my main complaint of my nerve damage in a stocking-and-glove pattern, we've long known the nerve damage is throughout my body. One effect is I have vision problems that cannnot be corrected with glasses or surgery. What we didn't know is that you can sometimes see my pupils flutter rapidly when you shine a light in them. It's a symptom that is impossible to fake, cannot be induced with drugs, and is a clear sign of nerve damage. As a result, not only did I get pain relief in the ER, they also put me on a fast-track referral! (I'll have an appointment this Monday or Tuesday.) Merciful heavens, they also gave me medication to be out of pain until then.

Thank you everyone for your prayers and well-wishes! They were answered!!

More Than One Right Answer

I was asked the other day how I keep my faith (in a God of my understanding) when I've had so much happen to me. A friend was trying to play the "Have you tried" game with my migraines. I gave her a few tries & then I explained, in order to be considered a candidate for the experimental ONS device, it had to be show that I had vigorously tried every available option in 2007 and have it fail. I was among a handful of people arcoss the country allowed in. And that's when she asked me, how do I still have faith?"

It reminded me of a time when I must have been four, and the whole family was playing a game of I-Spy. We would get the color, and the first letter of the name of the object, and then we had to find the thing my parents had in mind. They had said, "Red, B!" And I had come up with "Red Ball," which was a piece of a toy I had, not the whole object, but I figured it was close enough. My answer surprised my parents, and they had to admit, yes, I was just as right even though I hadn't found their answer.

There are more right answers out in the world than are available to me. When I was a part of that study, it was one of those miracles of luck where all the right people are in the right place. Oh, that doesn't exclude one really bad apple from being in the mix, and in charge... But still personal miracles can happen despite even rotten folk.

There is so much more going on out there than any of us are aware of, good work by amazing people who are changing the world and even they can't know the true future impact of what they do. Even though I still struggle with disabling conditions, there is progress going on everywhere, progress in me that I cannot see yet, progress in the world around me that I haven't met yet.

The same is true for you. As long as you can hang in there in the best spirits possible, that gives you a chance to meet those opportunities. I know that sometimes my biggest foe is my own doubt, and that I have to have faith that whether or not I get better, that life on the whole can get better, giving me more encouragement to fight the good fight. There will still be times when I'm knocked down and question, but if I'm honest I question success too, so who am I to judge?

Dealing with chronic pain is soul-stealing, of that there is no doubt. Pain robs us of quality of life and robs us the ability to participate in Life. It's the latter which is the most damaging because participating in Life is what allows our souls to grow and overcome those stolen pieces. Even if we must suffer in a tortured body we cannot escape, the beauty and awe of life can be a balm against pain. Connecting with others and being part of a group can invigorate more than any elixer.

The longer I live, the more I see how limited even my imagination is. I may think there's only one right answer for my life, and I have to have that right answer or I'm doomed. Yet the more I see and discover over time, the more I find there are several right answers out there. More than I know. More than my doctors know. More than any of us know...

And in that space of the unknown lies all possibility for you and me. You can have faith in that.

Pain versus Life

I'll be honest. I don't like leaving my house. My house is my comfort zone, somewhat literally. When you suffer from debilitating pain that can suddenly take away your ability to walk or grasp with your hands, and that pain comes on somewhat randomly, well, then there's a big difference between you leaving the hoise and me leaving the house. There was one time I had someone hold my purse, and he asked why it weighed 20 lbs. when it was so samll. I replied without thinking, "I have to carry so many emergency supplies. It's not just the emergency shot, it's not just the breakthrough medication so I don't throw up or become immobilized with pain. It's all the paperwork I have to carry that goes along with those medicines, all the doctor's business cards, all the emergency contacts (in case my phone is locked). And then there are the regular day to day items like wallet and keys. It is a minor logistical operation every time I leave the safety of my home. And that can create enough of a barrier to make me not want to go outside.

Even today— somehow my breakthrough medication fell out of my purse and I didn't have it on me when I needed. That meant having to muscle through an event, trying to concentrate, and also trying to keep my breakfast down. I learned earlier this week that movie theaters have only gotten louder since my migraines started. Apparently kids these days want to feel the movie explosions like some thrill ride, not just watch a story on screen. I about collapsed, and we were in the back row! (Thank goodness the feature was more an art house film, but even then there were parts in the soundtrack where I wanted to strangle the director, "Are you trying to hurt me? Stop the noise!" But thankfully those were few and far between.

But it made me realize, it's not just me! Well, it is mostly just me that reacts this way, but also, people are demanding more and more sensory input where I want less and less. As another blogger mentioned, I'd be happy if things were just normal for a while: "I want to sustain some sense of balance and maintain my work for a while." From Nikki's post, Maintaining consistancy is a good goal to have. And considering the roller coaster of pain we have ride "Forever," a nice, flat straightaway is a good change of pace.

So is it any wonder I find myself dreading the moment I know I have to let go of the handle of my front door? Not really. I don't know what to expect as much as the next person, but I can guarentee there is a high likelyhood that I experience pain. Sure, that pain is just as likely at home, but at home I know I can find comfort, I have the tools at hand that I need to take care of myself. It feels safer to stay at home because it is safer to stay at home.

But with spring exploding outside and around me, I also have a draw to be outside, to be with people, to explore, and discover, and grow. (My garden is full of little potato plants that have just burst through the soil!) I want to be able to be out there, engaged with other people, helping my community. And that very real fear of being stuck somewhere, in pain, unable to make my way home, can stop me from stepping outside my home.

I think, like Ms. Albert mentioned, I need to scale down my goals. Though I clearly have spring fever, I can pace myself as well. When I learned to ride a bike, it wasn't all at once. I started on a Big Wheel, moved up to a tricycle, then a bike with training wheels, then just one training wheel, and when I graduated to two wheel was when I realized the third wheel was causing me more trouble than helping. I had learned how to balance myself even as the bike moved from side to side beneath me. I learned how to feel the invisible tug of inertia and gravity and use those forces to balance and propel myself forward without thinking.

I am not there with my chronic illness yet. I need the training wheels of an emergency stash of pills in case they fall out of my purse at home. I need the emergency shot and the pounds of paperwork that go with all these medications. I am not in the clear yet. So it's perfectly okay for me to be cautious, and scale back my ambition to a more acheivable level. Does that make me less capable? Hardly. Though I may not be able to soar on invisible forces like I did as a kid, I now respond to much more serious invisible forces, and it's a testiment to my hard work that I am able to do what I can now, even if it's only at Big Wheel level.

Recovery is not a straight line, it is a ribbon that we follow through many twists and loops. We are always moving forward along the strand, even if it looks like we've fallen back. And it's okay for me to pace my recovery at a rate where I'm comfortable. After all, I'm the only one who really knows what's going on inside me. When consistancy has been gone for so long, it is a worthwhile goal to have.

Thank for the reminder, Nikki!

Pain Induced Insecurity

No matter how successful I get, #pain can make me feel lower than worms. I'm not talking about the migraine mood swings I've mentioned before. I'm talking about the feelings that really intense pain causes in an of itself.

The first question pain always asks is: "Why is this happening?" If there's a satisfactory answer (example: you're sitting on your leg and your foot has fallen asleep) then appropriate action is taken (you change how your sitting and rub your leg) and the pain resolves itself. Greater injury requires greater courses of action, of course, but most pain serves a purpose. They believe even migraine pain, since it's the 2^nd prevalent disease (second only to cavities) world-wide, serves a purpose. But no one has a good answer to the question why we get migraine pain. So it should be no surprise that when that pain occurs, without a satisfactory answer, what's left in its place is a gaping hole of insecurity.

Did I do something wrong? was it something I ate? Was it something I didn't eat? Was it my sleep or lack thereof? Is it the weather? Am I coming down from stress? Have I take my medication? Is the medication working? Would it help if I were in a cold, dark, quiet room? Or should I be in the shower with hot water and ice packs? Should I sleep or will lying down make this worse? HOW DO I MAKE THIS STOP???!!!

Usually followed closely by:

Why is this happening to me?

Which of course leads to:

What did I do to deserve this???

The answer is: Absolutely nothing.

But of course it doesn't feel that way. It feels like Hell. It feels like unholy torment on Earth. And when there's not good answer why, all that's left is a feeling of unjust despair.

That's why it is SO important to have a distant shore on which to set your sites. A distant shore is a goal, something on which you've set your sites. It has to be something for you and for others, so that other people need you, and you want to do it for yourself and your own self-esteem as well. It could be seeing your kids graduate, or health activism that you do online, involvement in your religion, or in a peer-support group (if you can't find one, start one!). Whatever works for you as a far and distant shore, make one.

The result is something to fight for, a reason to tell the insecurities, Hush up now. You're only temporary. You will go away when the pain is gone, and hopefully that means soon. In the meantime you mean nothing, because I have PLANS, see, and I'll be right back at 'em when you're gone.

But, oh, having just having come from that experience I can tell you I felt lower than a ketchup stain ground into a Manhattan sidewalk by a million pedestrian commuters. The only benefit is, it's Manhattan! lol Seriously, though, I'm so glad I had something to look forward to once I got well. I really like the thought that I didn't have time for this because I had too much to do! After so many years of being crippled and incapable of production because of pain, it's nice to have a shore I know I will be working towards when I'm well again.

When I reach that shore, I rejoice, celebrate, relax, and then once fully savored, I set another distant shore. ;)

[THP] 20m Happy Memory - Pain Control

I had received my prescription, and I had taken my pills. It had been long enough for the pills to get into my system. And I want to go do something, bracing myself for the pain and exhaustion that would follow. But it didn't come. At first I didn't believe it. I thought it was just waiting around the corner, ready to pounce on me, as it had done, every single time, for the past 10 years. I could do things, sure, but there was always a monster of consuming pain, waiting for me on the other side. Not this time. I had pain control.

I couldn't believe it. I did a quiet dance in my head. I didn't dare celebrate yet. I'd had drugs work for 20 hours then quit (Depakote). I'd had drugs work for 3 days then quit (Neurontin). I had to be cautious with my optimism, but it was there. A rising joy that maybe this time we'd finally gotten it right. I had faith in this medication, after all, it's a narcotic. I'd had narcotics not work on me before (Fentanyl), so I knew if this one worked at all is should work completely. And signs were good! The monster wasn't there. The room usually filled with pain and agony, was empty. I was stunned.

And now I'm stunned that I'm giddy with happiness to do stupidly bothersome chores, like mow the lawn. It's hard, and I need to use my mind as well as my body. And every moment I can sweat and exert my muscles, I'm just laughing with delight inside. I haven't been able to do this, even if I wanted to, even if I had to, for 10 years. Now I can, and it's marvelous! Being able to clean the house? Yes, please!! OMG, everything is showroom perfect!

I do have to pace myself, but now I can trust my body to be more realistic in its complaints! I'm not going to be punished for every little thing I do! I'm not in trouble anymore. I can make my life my own again---I have the freedom to make the choices >I want to make, rather than have my body just say no. Oh.... it's so AMAZING!!

There's so much that I want to do, and like a little kid who has finally been let out for summer, I'm going after everything I put on my wish list or jealousy list while I was sick. Gardening is the first. I want fresh grown fruit for my jams and pies! Hold the phone, it's so wonderful! And Asian veggies?? OMG, must have! This is all so brilliant.

Every morning, I'm happy to wake up. Even if I've got a migraine to ride, that's okay. I can ride it. I might have some terrible mood swings, but they'll pass. I HAVE PAIN CONTROL!! That means that none of this stuff stops me anymore. It can fuss and fight me all it wants, but in the end, I'm going to win now. I'm not going to have to set my life aside for anything, ever again.

Hallelujah!!

Why I don't read other blogs... (Confession)

I've been thinking about it for a few days because it's been weighing heavily on my heart. Here I am, blogging away, getting all this support from you, and I have a difficult time turning around and reading what you---my fellow bloggers---have written. Oh, sometimes I'll rediscover Google Reader and go on a blog reading binge. But most of the time I don't keep up. And it's the same reason that healthy people have a difficult time talking to us: It hurts too much to know.

I want to be there for you, to help cheer you on, to lift your spirits up... I want to hear about how you're succeeding, because I want you to be successful in your life. I have trouble hearing about the struggle, pain, and heartache. I want to recognize and deal with that. I want to help. However, I want to keep my mind focused on the positive, and that's difficult to do when I'm reading stories about the negative.

And that's what's so difficult about talking to people with chronic illnesses! If we look at the illness, that's a lot of struggle, a lot of disappointment, a lot of heart-break, a lot to despair over... And for so many people where there's only treatment, never a cure... And for so many other people for whom the illness is just a fight to have it not kill you... I really don't want to hear about how an illness is overwhelming and swallowing up your life.

See, the problem is, I've been through that. When you tell the story of your pain, I feel your pain, I remember my pain. It all comes back in a horrible flood of traumatic memories. I can't handle that on a regular basis. It's too much. I have to be in a mood that feels like every problem is solvable, and I am mighty, before I have the strength to read other blogs. Otherwise, I could find myself awash in memories that then trigger me and leave me shuddering...

I want to hear about everything you're grateful for despite what's going on. I want to hear about how it's difficult, but that you're learning coping (or you're fighting to learn how to cope). I want to hear about how you're successful in dealing with your disease. I want to hear about the humor you've picked up along the way... I want to know about you---your hopes, your dreams, your inspirations. I want to know how your beating back the darkness.

I know about the darkness. I've traveled enough of its depths already. I don't want to know more. That's why I don't read other patient's blogs. It hurts.

Forgive me?

#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 "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 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."

#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."

#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 www.FightingHeadacheDisorders.com."

#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.

But...

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 www.FightingHeadacheDisorders.com."

#NMAM Do That To Me One More Time.

What comfort measure do you find helps you enough during a Migraine that you go back to it again and again, and how do you use it? [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 www.FightingHeadacheDisorders.com."

#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 www.FightingHeadacheDisorders.com."

#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 www.FightingHeadacheDisorders.com.

#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?

How to get doctors to listen...

I was asked a very important question, over on my tumblr page: How did you ever get someone to take your pain seriously? Pain is one of the most soul-stealing symptoms of a disease. Pain changes how we behave, it changes how we think, it changes how we live our lives, it changes who we are, and who we're allowed to be. However, there are people out there who would use pain pills for things other than pain. And even though addicts are outnumbered by real pain patients at a rate of 9 to 1, even I worry about giving out advice that could be used to abuse the system. But I think I've found a way around that problem, while still helping pain patients get what they need. The key is: Tell your story.

One big way we can set ourselves apart from drug seekers is by telling the story of our symptoms. This is completely backward from everything a doctor will want you to do. Just as they don’t want to feel rushed, they’ll take out being rushed on us, and try to speed up the doctor-patient communication time. DO NOT LET THEM. They will want to make you rush and list off your symptoms like you’re reading out of a manual. But all that does it make it look like we’ve memorized the list from some web site, which is fine if you want antibiotics for strep, but is awful when you need pain medication. Instead, tell your symptoms in the form of a story: “When I wake up in the morning, it feels like this. I’m not able to do this or that, because blah, blah, blah. It’s really embarrassing our in public, because yadda, yadda, yadda. When this happens, it’s like that.” In the story, there are small little details that only doctors and patients know about. Doctors, because they went to school for it, and patients because they’ve actually experienced it. You will know things that no web site can teach you, and in this way, you can show your doctor that you’re pain-avoiding, not drug-seeking.

Try it out, and let me know your results!

Ask me more! I welcome questions at any time. No question is too much! (Though I may edit content to maintain a work-friendly blog.) You can even ask anonymously!

I have pain control!!

This month has been amazing. I have been able to do things that I haven't been able to do since I got sick. I was able to mow the lawn for the first time in ten years. I was able to enjoy a lightning storm for the first time in almost fifteen years. I am no longer a human barometer! I wasn't able to predict this latest round of storms because nothing hurt! My doctors and I have finally found a combination of medications that has me feeling NORMAL again. I'm still in shock. Here's another, "I didn't think this would happen in my lifetime."

We're in the stone age when it comes to pain control. Worse still, we have a "War on Drugs" that casts many helpful medications in a hurtful light. The medication that has given me my freedom back has a bad reputation. But it's a medication with absolutely NO HIGH. I can be on this medication, and it doesn't affect my ability to think or operate heavy machinery. It's methadone, the medication given to heroin addicts, and it works wonderfully on my neuropathic pain. The change has been night and day. I feel like a new person. I'm still in shock, because I can't believe this is real. It's as if my pain is simply gone. There's no side-effects. No fuzzy feelings. No la-la land. Just no pain. IT'S AMAZING.

The only drawback to this medication that I can see is the stigma. And if that's the only drawback, I'll take it! My pain has been under control, and I'm at a very low dose. There's no drowsiness, and the pain control is so complete, I've started doing land-based physical therapy. I was able to exercise for 40 minutes! In the past, at its worst, the pain has been so bad that my physical exercise was restricted to trips to the bathroom. I was stuck on the couch, in pain, for weeks. That was just last year. Now, I'm able to use a stationary bike for 7 solid minutes. Unreal. I'd be a fool to let stigma stop me.

It's not always 100%. I still have breakthrough pain from a number of sources. For the terrible, debilitating, ice-pick pain? I have a medicated lotion that works like a charm. I still have a narcotic medication for the break-through pain, but I haven't had to use it that much at all. The methadone is really doing the trick. That daily, grinding, soul-sapping pain that I lived with every moment, that I had to manage from moment to moment, is gone. I have FREEDOM again. I can make decisions, based on whether or not I want to do them, rather than whether or not it is possible for me to do them. I can use all this time that I've had, sitting on my hands, and actually go out and do things. And I can do these things at the pace of the people around me, instead of cut short all the time, by my body screaming at me.

I went camping. I slept on the ground. Usually I have to specify the type of chair I sit in so that it's comfortable enough for me to sit for more than thirty minutes. Sleeping on the ground?? That's like asking someone to sleep naked, on a bed of broken glass. You'd have to be insane. But I slept through the night, and in the morning, I didn't feel like I'd been run over by a truck, either (which was normal, even sleeping on a mattress). I was able to go sight-seeing, and then I was able to drive us home, which in itself is unreal. Usually the vibrations of the car set my nervous system on fire. If I'm driving, I also get the vibrations through the steering wheel, to one of my hot-zones: my hands. When I lived in Seattle, had a 4-hour drive (behind the wheel) landed me in the ER. I generally don't road trip unless I have to. This time, the travel was enjoyable.

My head is just spinning with all the possibilities. Life has opened up to me. My body still needs time to recover, but if I am steady with my physical therapy, this should happen. With time, I could potentially return to work. I'm practicing by increasing my workload at home, and my house has never been this clean! I have everything organized for the book, and I should be able to start a normal (rather than haphazard) writing schedule again. It has been ten years since I have been able to be this consistently productive. It feels SO good!!! I am able to be responsible like never before. It is such a comfort to my soul.

I want to throw a party... I'M BACK, BABY!!!

But most of all, I get to tell myself: I was right all along. It wasn't that I was lazy, or that I didn't want to work, or that I was afraid, or that I was being unreasonable. It wasn't any ulterior motive at all. It was just that I was in pain. REAL, physical, biological in nature, pain. I wasn't making excuses, or having delusions of illness. I wasn't malingering. It was absolutely real, and the moment we got me the right medication, I got BETTER. And it wasn't me drug-seeking, because the medication that works, has absolutely no high!!

At my party, I'm going to have a big ole serving of crow, for all my haters and non-believers. I'm also going to do the "I told you so" dance. ;^D

Life is sweet again.

Happiness in chronic illness is possible, but essential to that happiness is management of symptoms. If the symptoms are managed, you can learn to live with disease as though it's not there. However, if the symptoms are not managed, then at any moment, without warning, my awareness can be ripped from whatever situation I was dealing with, to the necessity of dealing with a symptom. Disease interrupts anything and everything. It does not care about sleep. It does not care about manners. It does not care about embarrassment. It does not care about safety or responsibility. It does not care. And it, by necessity, makes me not care, too. But it's the disease, not me. It is a world of chaos and vicious whim. Happiness is very difficult to find there. Manage those symptoms, and I am in a different world. The difference is heaven and hell.

The key to walking through hell is: don't stop.