Dear Tremors,

I’ve had essential tremors, those little uncontrolled twitches in my fingers and hands, for years now. When they first started, the doctors shrugged off my concerns. They said it was just medication interaction and not to worry.

So I didn’t.

I bet the pills for these tremors aren’t covered by my insurance.

About a year ago, they came back with a vengeance, happening more frequency and in bigger spasms. Suddenly, everyone was concerned about it, and I had to get an MRI stat. The scan came back showing I had a normal migraine brain: I had bright spots where the migraine had blown holes in my blood vessels, cysts in my sinuses and another in my brain, but nothing more interesting than that. No one was worried.

But last week, the tremors got worse. My hands and fingers shake and twitch almost constantly. My arms have gotten involved, and my jaw sometimes spasms as well.

When I went to my primary care doctor to discuss the problem, things reached a crescendo. I don’t know if the stress of the office visit made it worse, or if that was just a really bad day, but I was one big twitch.

Everything was trembling: my eyes, my tongue, my arms, hands and fingers, my legs, my ankles … my doctor had trouble doing the neurological exam because I couldn’t make my limbs hold still enough to test reflexes easily.

Last November, I fell while sleep walking and hit my head. It was really bad, and the pain management doctor wanted me to go in for tests. I really hate doctors; I figured I was upright and walking in a straight line, so I was close enough to okay.

But that spot had a huge lump that took ages to subside. The left side of my head stayed numb for weeks. And I still, months later, have a lot of pain from that area. So it’s probably good someone’s finally taking a look at that area.

I also have to get a variety of blood tests and some urinalysis done. They wanted all of it done the next day — Thursday — but I had such a bad migraine, I was down for the count. So now it’s all on for tomorrow, Saturday.

I try not to think too much about what the tremors are, or what they mean. But, with the variety of symptoms, it’s hard to not wonder about Parkinson’s or fibromyalgia. Or did that fall cause some sort of brain injury? It’s too scary to contemplate such possibilities.

So for now, I won’t contemplate. I’ll stick my fingers in my ears and close my eyes.

What I don’t know can’t hurt me, right? Right?

I’ll be sticking my head in the sand, but I’ll still be,

Payne.

Dear Bright Moments,

I’m better.

Thank you God, I’m better. The horrible dragging weight of depression has lifted some, the clouds have cleared so I can see some blue sky, and that desperate urge to hide away is fading.

Well, this certainly doesn’t look ADA accessible.

The upswing feels so good. This was the worst major depressive episode I’ve ever had. But climbing out of it feels like a miracle.

Yesterday, I laughed at something — I guffawed. Today, I gave myself a manicure and a pedicure. I cared enough to take care of myself. I got up early and took the dog for a long walk. All these signposts tell me I’m headed in the right direction.

While I was stuck in depression’s pit, some good things did happen. Two specifically I want to share.

About two weeks ago, I was curled up on the couch when the front doorbell rang. When I went to answer it, I was boggled. It was my sister — who lives in Colorado and had no business just showing up on our doorstep.

After the exclamations of surprise and delight, she clasped her hands to her chest and said, “Clifton asked me to marry him!”

We grabbed at her left hand, but the silly girl wasn’t even wearing the ring! She had it stashed in a box in her pocket. It’s a lovely ring, a family heirloom. She was glowing with happiness, and we were thrilled for her. She and her guy have been together for a very long time, so a chance to celebrate that is a grand and glorious thing. Wedding plans have begun in earnest.

Perhaps my biggest news, and the coolest thing to ever happen, was that I had brunch with one of my all time favorite authors. She was in town for a big writer’s convention. When I saw that on her blog, I emailed her and asked if I could come by and get my books autographed. She responded and suggested meeting for a meal. I swooned.

And so I had lunch with AMY LANE. She’s an award-winning author of a lot of male/male romance, but I love her best for her Little Goddess series: Vulnerable, Wounded, Bound, and Rampant.

The next in the series, Quickening, is coming out at the end of the year. It’s only been 10 years since the first book was published. I have waited faithfully, and only hounded her a dozen or so times a year asking about progress on Quickening.

If you’ll remember, I was a professional writer and editor, so mistakes in self-published books can ruin a story for me. Too many and I’m done with it. And Amy’s first self-published book was a disaster in that respect. But her story, her characters … I loved them and had to know what happened next, even if I was mentally reaching for a red pen.

The whole series is being polished up and re-released by an actual publisher. If you haven’t read these books, I whole heartedly recommend them. Go find the re-released Vulnerable right now.

Anyway, we met up at a brunch hot spot near her hotel and spent an hour and a half chatting about all sorts of stuff. But the best part was talking about how much we loved these characters; how much I love the heroine Cory. How Cory’s strength and power make me feel some of both on days when my body feels nothing but pain and sadness.

I was so happy to tell one of my very favorite authors how very, very much her work, her stories mean to me. And it was the coolest, niftiest thing ever.

And the next day, she mentioned me on her blog!

So good things are happening in Payneville, where the mayor is

Payne.

Dear Rising from the Ashes,

I’ve crawled out of the depths of despair.

Depression is so strange*. I don’t realize where I am, how bad it’s gotten until I’m at the bottom of the pit. Then I recognize the claw marks on the wall, the nest in the corner, and realize this terrible place is one I’ve been many times before. It’s rock bottom, emotionally. And I didn’t see the edge of the pit. Didn’t feel myself fall down the slope. Didn’t even feel the impact when I hit the bottom. Didn’t know until I looked around and saw my own graffiti on the walls, my own shit in the corners to know this was a place I was held captive before.

The good thing about the bottom of the pit is that I’ve seen it before. I know it’s shape and feel. Once I landed there, it only took me a day or two to realize exactly what was going on and what I needed to do to get back out.

Not that doing those things were easy. Serious depression, real depression, chemicals-in-my-brain-are-unbalanced depression is like being dipped in lead. It’s hard to move. Every thought is weighted down by thousand pounds of nothing.

You could ask me in a kind, loving voice, “What’s wrong?” I’d have no answer. Nothing is wrong. I’m not sad. I’m not dictionary-definition depressed.

You could yell at me, scream and demand. I still couldn’t answer. I would desperately want to shake off the weight, to help you. To fix things. To be who I really am. But she’s buried under tons and tons of nothing, her brain trapped in a mix of chemicals that freeze and weaken, that suppress and drain.

Two things help me when I find myself at the bottom of the pit. My meds have to change. Without permission (don’t try this at home, kids.), I started taking an extra 50 mg. of Seroquel; I had extras, and it worked like a charm in conjunction with the other part.

I had to get out of bed, off the couch. I had to move. My savior from depression is walking. I try to walk more than a mile every day when it’s nice out and I’m not in hideous pain. Lately, that pain, weather, my sick dog, and then the depression kept me inside.

The day the Seroquel started kicking in, I was determined to get myself out of the house. It’s funny, Mom (sainted, wonderful, best thing in my world, SWMBO), came home from getting her hair done determined to drag me off the couch, because she also knew the keys to my depression and was determined to rescue me. How lucky am I to have such a wonderous person taking care of me?

So we did. We lassoed the dog, and headed to the park. My dog is a Anatolian Shepard/Rottweiler mix; he’s a mountain dog. He’s recently decided that he’s not; he’s a water dog. He’s taken to walking into the little pond as far has he can go, scaring all the turtles off their sunning posts. Then he lazily splashes the edge of the lake while I hold the leash and trail him from the shore.

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Well, I can’t say anything here other than my dog is the most handsome, sweetest thing in the whole world. And he’s eating something that when I purchased it, I did not realize it was made up of the penile region of an herbivore. Pizzle my ass.

Watching that silliness, walking in the sunshine, and getting those bloody damned chemicals in my brain back in some semblance of order was like magic. My world evened out.

And I’m back to being

Payne.

*P.S. If you have not read Allie Brosh‘s explanation of depression and how it is like dead fish, it’s worth a read. She explains it in a way that makes so much sense, and is funny as hell. It’s also a great way to help friends and family understand what you’re going through, how they can help, and how they’re not being helpful.

Another great writer about depression, who is also funny as hell, is Jenny Lawson, The Bloggess.

Neither of these women need me to pump up their volume; they’re both quite famous, and each has a book published in the last few years about their blogs and life experiences. But when we’re talking about surviving depression, it’s all hands on deck, people.

Allie Brosh, Hyperbole and a Half

Jenny Lawson, Let’s Pretend This Never Happened

Dear Trading Days,

I have been wandering around the house growling like a grizzly bear, trying to find the right ice packs, the right towel to wrap them in, the right ace bandage to wrap around all of that. All to go around my neck, where my second pain management doctor gave me two trigger point injections, one on each side of my neck.

When asked about his migraine, the bear said, “Grr.” Then he ate the reporter.

For me, these have been helpful. They’re expensive. Only a few pain management doctors will do trigger point injections, and almost none of those will take Medicare. There’s no assurance the injections will work, or that they will continue to work. Just because they worked last time does not mean they will work next time.

As Dr. Shots finished today he said, “These are already swelling. You might want to put some ice on them.” He’s a nice doctor, and I like him a lot, but he’s prone to understatement. I have mump-like lumps, and my neck is swollen and sore from the injections.

For me, this had been an exciting revelation over the last three or four years: migraines can become so bad that they cause the muscles in the neck to clamp down hard enough to cause deafness, blindness, fainting spells.

This is exactly what I look like when I have a migraine. Exactly.

The shots go in my neck, below each ear, making those seized-up muscles let go enough, hopefully, that I will be able to hear clearly. The injections are painful going in, so I’m relieved we’re only doing two locations now. In the beginning, Dr. Shots was doing a dozen little ones. After that, each point swells, sometimes leaves hickey-like bruises, and can hurt like a bitch. The muscle spasms, however, are the worst of it. Muscles that have frozen into that rigid state for a dozen years or more react badly to having a miniscule dose of “let-go” potion pushed into them. Those muscles respond with incessant spasms, cramping pain, and ongoing twitching. Let’s call all of this Rough Fix A. 

I hope the pain of the injections, of the swelling, of the muscle spasms, will all be worth it as the trigger point injections do their job. When all goes as planned, I can hear out of both ears. I don’t have to shake my head at people, point to my ear and say, “I’m deaf, can you repeat that, and louder, please?” If it all works, the muscles in my neck relax, and I can rest easier. My therapeutic massage can go deeper and work better. My range of motion is greater. And best of all, if the injections work, I think my constant, permanent, grinding, aching, stabbing migraines are a little better. Let’s call the whole of this Possible Solution B. 

We’ll call this Stupid Shit C. This is the sort of crap sold to “cure migraines.” Who buys it, you ask? People who love someone who has migraines. My fairy godmother buys me a ton of this shit, especially if it’s sold on that home shopping network, QVC. She wants me to feel better, wants to help. And, at 3 a.m. this sounds like a genius idea. When people give you shit like this, the only thing to do is to say, “Thank you. I’ll ask my neurologist/pain management doctor about it. I was really kind of you to think of me.” If the giver inquires later, you say, “My doctor said I shouldn’t do anything outside what she prescribes, but it was so very kind of you to think of me.”

Chronic pain sufferers, we have to make trade-offs. I’m willing to go through all of Rough Fix A to get to the potential calm waters of Possible Solution B. Chronic pain sufferers have to negotiate their whole lives. Will I do so I can have B?

Will I go through this horrible, painful treatment so I can have a vacation with my family? Will I give up going out with my friends any night this week so I can make a presentation on Friday for my career? Will I take antidepressants so my wife will like me better, even though it will destroy our sex life?

Will I take this pain pill now, when I need it, or will I wait to take it later because someone else needs me to be/do/have/say something for them? 

I don’t have the answers for any of you, but I remain your

Payne.

Dear Dr. Donna Wong and Connie Baker, creators of the pain scale,

Let’s talk about this pain scale business. The scale looks so simple, it’s almost insulting.

If, instead, pain was rated by how many blind monkeys eating peanut butter while being run over by a train on a scale of one to ten, people would totally get that. “I’m at six monkeys with four spoons of chunky peanut butter,” she whimpered. “Ah ha!” the doctor exclaimed, understanding her perfectly.

The problem is people start to think about it. Thoughts start out easy and reasonable, as easy and reasonable as people in a lot of pain can be, but oh, how it goes downhill. Watch it go:

Okay. I get that zero is no pain. Five is moderate pain.

But 10 … the worst pain imaginable. I have a pretty damn good imagination.

Is it worse than being tied to an ant hill, covered in honey?

Is it worse than being eaten by piranhas?

Is it worse than being boiled in oil?

I could go on and on, getting more and more gory and imaginative. I know this because, as a child, one of my English teachers called my mother to discuss a creative writing assignment that disturbed her greatly. My mother was amused. My mother rocks.

This is from a nifty webcomic called xkcd, drawn by Randall Munroe, who has a degree in physics and builds robots for NASA when he’s not entertaining us with stick figure drawings. Go visit him at http://xkcd.com/. Buy shit at his store. Make him rich and famous.

There are reasons for the pain scale. As a sweeping generalization, doctors tend to be left brain people. Lefties are about logic, exact mathematics, processes, facts. Right brainers are better at music, estimations, visual imagery (like faces or spatial abilities), language, and people skills.

The pain scale makes sense to these left-brain doctors. Being told you have red hot pokers being shoved into your eyeballs as they melt down your face doesn’t tell the docs enough usable information. It also grosses out the ones with weak stomachs and upsets the tender-hearted.

There is a magic key to the pain scale, summed up in two parts.*

The first and most important part of the magic key is knowing that if you want drugs to numb your pain, you have to give the right answer on this test. Here’s your cheat sheet:

  • Pain up to a five gets Tylenol or its kin.
  • Five to seven gets Schedule 4 drugs, things like Prodrin, Fiorcet or Toradol, or Schedule 3, Tylenol with codeine and all its friends.
  • If you want the good stuff, eight is the lucky number. Once your pain is an eight to a 10, you get the Schedule 2 drugs: hydromorphone, hydrocodone, oxycodone, and the like.

The second part of the magic key is that 10 on the scale means the worst pain YOU have ever felt.

But to rate pain a 10 as your personal worst, it has to be compared to other, previous pain, which is problematic. We forget past pain. It’s a gift our minds give to us, this hazy recall of past hurts.

But it’s also a problem when we’re trying to measure *this pain* on the pain scale against all the past pain we’ve been through. Keeping a pain journal or making an note on a calendar with words like “flaming swords” or “dripping acid” might help.

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As much as I hate these things, they do help organize thoughts. At the end of the month, when it’s time to visit the pain management doctor, it’s so easy to forget how many bad days there really were. How many crushing migraines happened that first week? What did I take? Where did the pool boy go? These are questions that need answers so you can get the pills you need to survive the next month.

Yours in pain and in pleasure,

Payne.

*One of my favorite podcasts, Radiolab, did a show on pain. The last segment has a smart lady talking about exactly this stuff, and how her father, a doctor, recommends gaming the pain-scale system this way. It’s very much worth listening to.

Dear Feelings,

My therapist says I use a lot of content words, but no feeling words.

How do I feel about that?

Distant. My emotions are distant things. I’m swathed in a cocoon of Wellbutrin, Lexapro, and Seroquel. Very little gets in, very little gets out.

I know I love my people, but it’s soft, safe emotion. I know I’m worried about my dog, who is sick, but the worry, which should be sharp and ragged, tipped with dripping reds and tarry blacks, is a warm red, a dark gray.

Are the LEGOs in pain, or are they sadistically predicting the amount of pain they will cause when you step on them? You know it’s the latter. The fact that there is no LEGO dungeon yet boggles my mind.

 

Pain is dulled by the soft layers wrapped around me. Lesser hurts, cuts and scrapes go unfelt, barely noticed beyond the sharpness of their first insult.

The persistent, deep, jagged, stabbing, shearing, grinding pain of the migraine stays, but I can sink into a meditative state where the pain is there, but I can almost set it aside for a time, felt but unattended.

So when Counselor Deb asks, “How do you feel?” My answer is no. And no thank you. Keep your feelings. I’ll keep the cocoon.

As always,

Payne.

Dear Pain,

The problem with you, Pain, is that you are a sneaky bitch. I never know exactly when you’re going to come slipping in the door and kick me in the head.

No. 7 is when you start to beg your loved ones to shoot you. Conversations go like this. Me: If I was a dog in this much pain, all the time, you’d put me down. Loved One: Probably. Me: So you’re just being selfish. Loved One: Probably. Me: So get the shotgun. Loved One: I looked. I can’t find it. Will hot tea help. Me. Damnit. Yes.

I’ve had a few good days in a row; this is an extreme rarity. I’ve gotten things scratched off my to-do list that have resided there for YEARS. I’ve cleared more than 500 books off my bookshelves and dusted five years of dust off those bastards as well. I did six loads of laundry. I shaved my legs. I started this writing project. I finished editing my mother’s will, which includes a Special Needs Trust to keep me out of the poorhouse when she dies and I’m still … well, this. But the moment Pain opens that door, I’m reduced to this.

This lump of screaming pain. I’m laying on the couch right now, counting down 20 minutes. That’s the magical amount of time I have to wait to see if the last handful of Dilaudad and Xanax and Tramadol and muscle relaxers have done anything to take the edge off this horrible mass of lightning strikes exploding across my skull. The pain is crashing, and smashing, and awful. I’m being banged about by pots and pans, they slam against the outside of my skull.

What was that, doctor? You’d like me to enumerate my pain on your convenient, oh-so-sterile pain scale? Where 0 is no pain, and 10 is being eaten alive by angry sharks with acidic saliva?

It’s about a Fuck-You-point-five. Did you hear the part about the lightning and the pots? Jeezus.

Top is a scan of a “normal” brain. Bottom is a migraine brain. Both are then exposed to a migraine trigger — light: low, medium and high. The migraine brain overreacts enormously, unable to manage the stimuli.

There have been billions of dollars poured into fighting breast cancer. We can give old men a pill and they can have an erection that lasts all day. Are your eyes too dry? It’s now a disease, with a prescription. Heaven forfend you have wrinkles, but we’ll shoot you up with bovine toxins until your face freezes into a caricature, and then don’t you feel pretty.

But no one seems to be studying pain. No one seems to be inventing better drugs for pain. Every illness brings pain. Every injury brings pain. The consequences of long-term, chronic pain are enormous and devastating. Why aren’t we doing something about it?

That’s 20 minutes, boys and girls.

You’ll find me back in the pill bottle, but always,

Payne.