Another Wet Christmas

With apologies to whoever wrote the original:

I'm dreaming of a wet Christmas
Just like the one we had last year
May your days be merry. Don't fret
Because all your Christmases are wet.

No, I didn't make fun of Christmas because I had a pleasant day. Medication and Belgian Christmas ale held the pain at bay for most of the day. Melissa put up a string of lights over the inside of our sliding glass door in addition to the tree. I'm very fond of lights hung from the ceiling despite the fact that it's a college thing. Before I met Melissa, most of my favorite Christmas memories were from college. Since our finals were pretty late in December, people got particularly festive.

After Melissa made the gesture of stringing up the lights right where I spend most of my time, I was determined to meet her at least halfway. She loves Christmas while I have a history of mocking nearly every aspect of it. WMMR and State Line Liquors each played a role in helping me stay festive. My favorite radio station eased me into the Christmas music instead of playing 100 different versions of "Jingle Bells" the day after Halloween. On Christmas Eve Day, DJ Pierre Robert had a special "Christmas Eve Spectacular." He played rock and roll Christmas music, traditional carols sung by rock bands and then continued his usual wonderful and wacky trip off the cliff. Before I knew it, I was enjoying Christmas songs by Frank Sinatra and Dean Martin.

I woke up relatively early Christmas morning despite actually going to bed the night before. That meant I could catch the tail end of the Cord Family Christmas Special. DJ Matt Cord has brought his family into the studio on Christmas morning for 20 straight years despite losing his father a few months before Christmas of 2011. He just about broke me up when he ended the show with a long series of clips from things his dad said on the air. I guess I'm still too wounded to allow myself the chance to let my own family hurt me again.

Melissa saved me from a potential morose mood by coming downstairs just as the show ended. She broke our Christmas truce and bought me a PS3 baseball game from 2008 when the Phillies won the World Series. It has Ryan Howard on the cover and he went on the become the National League MVP as the Phillies went on to win the World Series. The games come out too early in the year to reflect anything that happened that season.

In the spirit of meeting Melissa halfway, I let her watch Christmas specials on our most reliable TV channel, Antenna TV. That's actually what the network is called. They have a cable channel, too, but they feature shows from the era of antenna TV. These shows didn't seem as hokey this time around. The good cheer was inside me somehow and I'm not talking about being drunk. The lights, the company of my wife and my cats and the rest left me in a holiday mood.

Well, this is a blog about pain so I guess I better get around to it. The serious rain didn't hit until the day after but the front moving in was making itself known. I was in severe pain but it didn't affect me as much as usual. I guess it's because we kept everything so low key and within my limitations. Eventually, I demanded TV time for my new game and that kept me well occupied but the demand was in the spirit of things. I wanted Melissa to enjoy her holiday TV but I also wanted her to see me eager to play with my new toys.

I believe there was a point when the pain was just about to overwhelm me and Melissa made me some food that wasn't leftovers from a party. Serious nourishment can do the trick of keeping the pain down where I can bear it.

The day after Christmas (aka yesterday) was a different story. With all the rain we got, I spent much of the day howling in pain. I was also tired because I had gotten out of bed when Melissa got ready for work despite getting almost no sleep. She got Christmas Day off but had to work the day before and the day after to qualify for holiday pay. That's time and a half for a day she didn't actually work so she's not complaining. Today was more of a regular day of work for her but it won't stay that way.

Her family is coming to visit starting today. I look forward to it despite the extra pain. Some things are worth the pain, after all. As Tom Petty sang, "It's Christmas all over again..."

Apologies and Explanations

(As usual, I use the singular term, "pain doc," in reference to members of a practice. Some are men and some are women. Every once in a while, I may slip up and use a gender. Please excuse this. I am making a minimal attempt to protect the privacy of all the medical professionals involved.)

Last Wednesday, I made a few very pointed comments to my pain doc. Like most comments made in pain and anger, I meant the specifics of them as they applied to that particular time. Over that previous week, I had three separate appointments at that office. You probably know by now how painful it is for me to ride in the car. It's also painful to be around groups of people no matter who they are. The only real exception is when I'm drinking and it's obvious why I can't be doing that all the time. I was overwhelmed as a result and my porcupine spines were out.

The first pain doc appointment was actually more than a week before so it was actually two appointments in a week plus one related appointment this coming Friday. At the first pain doc appointment, we discussed ways of keeping me from moving so quickly down a path toward despair. My level of pain has been increasing much faster than the level of treatment my doctors can provide through narcotic medication alone.

We needed to think outside the box again. Previously, we had found solutions to some seemingly daunting problems. I was suffering from fibromyalgia symptoms but had no such diagnosis. My doctor informed me that fibro diagnosis is a process of elimination and that we had eliminated the other things. The doc put me on a fibro medication and my burning pain lessened as a result. I was trying to laugh about the bizarre things that my body does to me. I kept seeing television ads for medication to solve something called "restless leg syndrome" but I had the symptoms they were talking about in my arms. The pain doc diagnosed me with "restless arm syndrome" and put me on that medication as a test. It helped.

This latest outside the box thought concerns a medical device that I was supposed to get in 2002 or 2003. To be honest, I don't even remember what it does other than the fact that it runs an electrical current through problem areas. For years, I've shared the fact that a previous practice ordered this device for me and failed to ever secure it as a joke about inefficiency. At the end of that first appointment, the pain doc offered to make another attempt and I agreed. To be honest again, it was along the lines of a smile and nod. I didn't believe it would happen.

When I got home from that appointment, I got a call from the office stating that they needed to see me in two weeks about the device. I was at least half asleep and agreed. In fact, I was so out of it that I needed to call them back. I remembered that the appointment was for a Wednesday instead of my usual Monday but I forgot which of two Wednesdays it was. I had forgotten to write it down in my mostly asleep condition. I straightened that out in three calls or less and then I started stressing about this appointment. I tend to lose sleep before pain doc appointments and I'm not starting off with much anyway.

When I arrived at the second appointment, I was told very politely that the office had canceled my appointment. No one was sure why but I had not been informed. This was okay because mistakes happen and I can't be upset with someone who made an honest mistake and apologized. That's the sort of thing I resent my father for doing. In a way, I was relieved to not have an office visit because my sense of being overwhelmed was bad enough. I was given a prescription for the device and the information that it would be delivered to me for an in-home demonstration which is good. Remember. I don't really remember exactly what the TENS machine is supposed to do.

I got home feeling like I'd been let off the hook and the phone woke me from my nap. I was expecting a call from the medical supply company to schedule the delivery but it was the pain doc. I needed to come back to the office for a third appointment. Melissa wasn't home and I said that I would do my best because her schedule isn't quite so flexible in December. It turned out that she had off that day so I would have to come in for the second time in a week anyway.

It takes me an average of a week to recover from each appointment physically and mentally so I was still quite broken down. I was also loaded for bear because I feel the frustration from the person who has to drive me back and forth. First there was a canceled appointment and now there was another which I was unsure of how to treat.

As for the apologies, first there is the one to my beloved Melissa. Sorry I snapped at you and buried you in my frustrations. As I said before, "yelling" (I almost never raise my voice.) at the wrong person is a pet peeve of mine since I had been the target of it so many times. I'm also sorry that you had to absorb my frustration for all that time and you were buried in my feelings of being buried.

Secondly, sorry to the pain doc. I know you don't schedule appointments for the fun of it. I should have assumed that the changes were in response to commands from some higher in the food change. That person higher in the food chain is also not being malicious. They are responding to impersonal laws and professional requirements designed to "idiot proof" medicine. None of you are idiots and no idiot would survive practicing medicine for long.

My actual words were not all that severe. After all, I was taught to fear authority figures and that medical professionals were authority figures yet the fact remains that I react to stress like a porcupine. You may be pulling my spines out for weeks. The truth is that I am full of fear and helplessness. I spend most of my time like someone trapped in a raging river trying to keep my head above water and to avoid getting knocked out by debris. Sometimes, I feel like I'm drowning. You don't need to share that feeling.

Melissa saved me from my next encounter by postponing the third appointment with the medical supply company. I wasn't ready to handle it on any level. Having strangers in my home would have felt like an invasion so I would likely have treated them as invaders. I am very difficult to understand when stressed or tired. I was about 18 varieties of stressed and tired that day.

Now, I have had one day of calm waters that let me float down the stream. I got to enjoy almost 12 hours of being unconscious one day and a lovely glass of ale. When I returned to the 'net, I had 82 messages in my inbox to tell me that I need to reengage with the world soon. I'm not ready quite yet but it will work out. Life will knock me down again but I will keep getting back up. We'll take it one day at a time and be as gentle as I can to myself.

Yanking the Rug

You know the old expression "like someone pulled the rug out from under you?" I was feeling buoyant and full of excitement. The WMMR Campout for Hunger is this week and I promised myself that I would go with the donations we have gathered at various sales all year. We were going to go at a good time when stuff was going on and it was going to be fun in the service of a good cause. Unlike last year, we wouldn't go at the last minute.

Even at the last minute, something funny happened to me last year. I was having trouble walking as usual but there were cables everywhere for all the equipment needed to run a radio station on the road. I had a particularly bad near fall and was held up by a nice gentleman who was very polite. Afterward, Melissa informed me that the guy was a member of the parody hair band, "Steel Panther." In their makeup, they pull off the whole "too arrogant to share oxygen with you" act to perfection. Out of character, they're a bunch of nice guys.

Tonight is the first of three State Line "Christmas Beer" tastings being held over about a week's time. I always enjoy the tastings but I find myself hesitant to go again. My medical costs have gone up again and I'm unsure if I want to spend the money. It doesn't help that the price is still listed as TBA on the site and that there's no list of beers. It's even more dangerous to note that the Belgian beer sale is still going on. I want to sip Belgian ale at home. The second tasting features a special guest who is apparently pretty famous in the area beer scene but I've never heard of him personally. That price is also TBA and there's no listing. Do I really want to go there and risk having to listen to some spiel from a famous guy telling us his story? That night is a benefit for the UD Ice Skating Team and I despise ice skating for personal reasons. The third tasting looks like the best one because it benefits "Toys for Tots" and admission is an unwrapped toy or $12 each plus the glass fee. With Melissa working in a toy department, we could do something nice for the kids and get in for less than the standard cost.

Will I be able to go to the campout and have energy left to enjoy the tasting? Somehow, I suspect I'd find a way even if it cost me days of pain. I'm not ready for days of pain again. In fact, I find myself thinking about staying home and saving the money for emergencies. I'm stressing about too many things right now. Up until yesterday, I was doing pretty well with the coming down and relaxing bit. Now there are too many expensive choices staring me in the face.

The result is that someone yanked the rug out from under my buoyant mood. The food needs to get to the Campout because it won't do any good sitting in Melissa's car or the garage. I wish I could get my buoyant mood back but I feel helpless right now.

My pain doc's office called me yesterday while I was asleep to schedule what is likely a pointless appointment. I woke up just long enough to remember the time and the day. I just didn't remember what week it was, of course. The two dates that sound right would both be on the right day of the week. I put a call in and have gotten several calls back. The first was an automated call promising to lower my credit card interest rate because I've made several payments on time. Nice try, putzes. I don't have a credit card! The second call was a hang up. The third call back was from the Executive Putz in charge of the NRA. He is still claiming that the government is going to come for my guns. Well, I haven't worked out in a long time but my wimpy biceps are the closest I come to having guns. Even better, he's lying about the government trying to undo the Second Amendment. I wish he were right!

Pippi chose this call to jump up on my leg, lose her balance and shred me while falling. She left at least two nice long scratches which sting like hell. In case you haven't noticed, the pain doc's office was not among these calls and it's going on four hours of waiting! I haven't decided how much longer I can wait before the bathroom will be too much of a priority. That's not even counting the fact that I got under two hours of sleep to get up and make this call. Okay. My second call was as useless as my first.

My mood has been torpedoed again. The ship is going down. Hopefully, there aren't any sharks in this water.

PDD: November 2012

Yesterday was pain doc day once again. I ended up using full scale honesty just as I knew I would. My pain doc is excellent whether I'm talking about the boss in charge of the practice, my regular monthly doctor or a former regular whom I still see occasionally. My favorite is my regular monthly doctor at the moment. She always takes me seriously which encourages me to be fully honest. There's more than one angle to look at everything.

I'm able to bring up the psychological angle to the pain without fear of her accusing me of being crazy. There are others at the same practice with whom I might not wish to talk about anxiety. My stress levels have been through the roof especially if you consider both eustress and distress. I was able to tell her that I'm having trouble keeping my head above water right now. There is something called a feedback loop that gives me a lot of trouble. If I'm feeling negative, I will see negative results that will make me feel more negative and so on. That one's easy to explain. The positive feedback loop is just as problematic for me right now. I skip rest to finish one more thought on a story project. That accomplishment feels good so I keep going. Then, I either make myself too sick to put in that hour a day or so that I can handle on a regular basis or I finish the draft. That leaves me on the ragged edge of withdrawal from a natural high.

We decided that what I need to do now is rest. I need to come down from the stress. There are a couple of State Line tastings coming up which would help me come down a lot. I tend to leave those feeling rather relaxed. The key to rest for me is avoiding things that get me keyed up but avoiding boredom most of all. We all know that there's nothing to do but hurt when you're bored


You can follow all of my online writing by following my Twitter account @John_Stapleford . I find Twitter a little weird but I made my peace with it by limiting my tweets to links.

Panic Attacks Are Fun

I was just getting a few things ready for pain doc day. I just needed to figure out what meds I was going to need first and then fill out the form for the pain doc. I was just standing there and realized that I needed my organizer to make my list which was on the other side of the room. In less than a minute, my heart was pounding and I was out of breath. I needed to sit down and did.

That's when it started taking everything I had not to explode. I wanted to scream because my two year calendar page ripped out of my organizer along with the straight edge while it was closed. My hands were shaking too badly to fit the straight edge onto the three rings of the binder. I was sitting there aware that I needed to write down my list of everything I needed re-prescribed but I couldn't remember how to say or spell any of my medicines. All I could remember was a concept of what each one did. Melissa nearly got her head bitten off because she decided to start getting ready for bed and had her back turned every time I wanted her to look at something. I'm still angry about that.

I knew I was having a panic/anxiety attack but it didn't matter. (There is a difference between the two but I can't remember what it is or mange to care.) The attack had me and there was no fighting it off. Even now, I cannot feel my lips. I need to replace my pain patch but I discovered a couple of sore spots on my ankles. It's been a few years but a sore spot on my ankle sent me to the hospital for a horrible experience. That's when I was outed as a diabetic to the medical system as a whole and when I lost all remaining respect for hospitals. They treated me like I was either harmlessly insane or hopelessly slow. Maybe this was triggered by my horror of ever going back.

In the midst of this panic attack, I need to remember that no one is sending me to the hospital. Of course, the pain doc appointment could change that conceivably but I have my main weapon. I have my ability to say the word, "no," as long as I can remain conscious. Moments like these make me consider the idea of isolating myself from the medical system as a whole. If entire religions can do it, so can I. Of course, I can't do that and take extensive pain medication so the idea remains rejected. I need to keep my uneasy peace with the system as a whole.

Whole New Levels

Maybe I got cocky. Somewhere along the line, I must have said this pain thing is no big deal. I can handle it. Maybe I got too frustrated with the state of certain affairs in my life, piled a few too many things on my back and decided I'd pay the price later. That's all guess work and I probably never will know for sure. There's a whole new level of pain and suffering that I didn't suspect existed. "Star Wars" quotes keep coming to mind. "What a lovely new smell you've discovered!" I would just rewrite it as "what lovely new agony you've discovered!"

It's just a few days before a pain doc appointment and I spent a day screaming unabashedly. Melissa thinks it's a combination of heavy stress and too much physical activity. That tells you nothing about the situation because I made a decision to keep this blog noncontroversial. One major source of stress in my life is a lifetime of controversial situations that cause me to make mountains out of mole hills seemingly at random. I find myself raging about everything except the thing that's really bothering me. Well, I've made some emotional breakthroughs so now I rage about that stuff too.

Well, I'm not here to write about emotional pain. I re-learned the fact that everything can hurt at once yesterday. The headache can merge with the arm pain somewhere in the shoulder or neck. The arm pain can lead me to seek comfortable positions that could lead to the back pain naturally yet it could also just be the screwed up signals from my brain. My legs might have hurt from crawling up the stairs because I was so certain that I'd fall. The foot pain could be straight from the pain or from the lovely ways my feet get tangled up in falls.

It's almost impossible to escape writing about the lifetime of emotional pain here. Any sensible person who doesn't make a living as a cowboy or something else that physical with such poor benefits, would have stayed in bed today. They would have insisted that getting more than two hours of sleep should be the priority. I'm not sensible once I've been triggered. The pull of "get to work you lazy ass" is even stronger. I should be able to laugh at memories of being told that I have no tolerance for pain and need to toughen up. Instead, I keep telling myself "it doesn't hurt that bad" and "you can get something done before the pain shows up. I feel these things with yesterday's agony fresh in my mind and I think I should be able to prosecute the person who put those ideas in my brain.

That's where the controversy would come into play. Days like yesterday and the night before represent a different reality from the one where I get told that it just has to get done (for many definitions of it) and that's final. There is no way to reconcile those differences. I'm not a hoarder. I'm someone who never has days that are good enough to walk out to the dumpster without severe consequences. On my bad days, I have trouble making it to the bathroom. Writing that cost me some dignity, of course, but dignity ends up being cheap. The sort of help I need is hideously expensive.

That lifetime of emotional pain wants me to declare myself to be a wastrel. The fact is that pain control is as exempt from my usual penny pinching as I can make it. Yesterday, someone who was trying to be mean (for good reason) told me very clearly that a sensible person could see me as a wastrel with my priorities too screwed up. I had started it by being just as mean if not meaner. With that memory clear in my head, I can't remember the second part to my brilliant argument. All I can think is that I had better get my lazy ass to work and earn my oxygen for the day.

There is still part of me that considers myself a genius at coping. At least I can reconcile that reality with the one I'm experiencing now. If get the job done, I might be more comfortable later while I'm screaming in agony. It's coming. I can feel a normal day's headache already there.

The Ragged Edge

I'm back on the ragged edge of coming down from a high. I found myself driven and finished the first draft of "Angel" and had to kick it to the curb. If I didn't separate myself from it, I would have kept adding scenes here and there without ever finishing a draft. Now, I have a first draft that is appropriately bad. I can wait a few days then look it over to decide what needs to be done with it next. Chances are that certain characters will need to be strengthened and others will have to be removed. It's too soon to think of that because I still like them all.

Any serious concentration means more intense pain. It's a fact of life and the fact that I love writing makes the pain more worth it. It doesn't take away the pain or the need for breaks. When I'm winding down a project, I do tend to lose the ability to rest. I keep thinking that just one more whatever will finish the job. Of course, my disability is too powerful to fight head on like that. If I can't make myself sleep, I can lie down for an hour listening to music. I can re-read something that inspired what I'm doing. Usually, I feel a bit refreshed after an hour and I'm ready to go again.

So, I kicked the "Angel" project to the curb without cab fare to complete the metaphor. You'd have thought I actually did it with the way I felt. I wanted to re-read it just one more time to check this or that potential problem but it's too early. I can't see the problems now. I still see what I meant to write. I slept about three days straight and thought I was free. That's when the trailing edge of that momentum caught me. I was impressed by some housework that Melissa did. (I want to use one of my expressions. She banged it out. She pounded it in. She nailed it and wrestled it into submission. I just don't want to embarrass her so I banged out the first draft and she simply "did" the housework.) She made a hole in the clutter.

Honestly, I think I'm afflicted with something called "clutter blindness" that truly does exist. Part of it is being realistic about Chiari pain but just as much is this blindness. As long as the clutter stays out of my designated areas that I want clutter free, it doesn't exist. There could be a pile of papers as tall as I am (but there isn't and there never has been) and I won't notice it unless it encroaches onto my territory. My cats drive me nuts at times because it seems to me that they generate absurd amounts of clutter. The truth is that they generate small amounts of clutter that extend into my "clean" zones. Worse, my girls cause clutter to make noise. I can ignore it if it just sits there and I do. When Maddie rammed a trash can in my office at full speed just now, it made noise and I saw it was over flowing. Therefore, I'm going to deal with it right now.

That was a classic case. I came up here to write a cautionary tale of exhaustion but the ragged edge pulled me back in. There's no point in looking at "Angel" again so I'm working on a story that started as a simple exercise in describing someone. Since the entire thing started with a description of a high school girl I decided to name Dominique, I had to make the story be about someone else. One thing pulls me to the next until I collapse from exhaustion and sleep for three days.

It's a mindless state to be in. Toward the end, I'll be desperate to sleep but virtually mainlining caffeine to keep at it. I suppose that I should go meditate or something. It used to help me come down. I'm just afraid of the pain that's waiting for me "down there." I can feel it now despite the adrenaline masking it so I know it will be bad.

I want to be awake for when Melissa comes home so I can present my take on her plan to get us a new dishwasher. It involves saving a small amount in numbers of dollars but a much larger percentage by changing how we acquire comfort food. If I'm not careful, I'll present a desperate request for comfort food from a raving maniac in pain. Must make myself presentable for when she comes home."

What A Night!

State Line Liquors has been my favorite place to buy beer nearly since I was legal. Around here in Northern Delaware, they are known as the place that's open on Sundays. Delaware has Blue Laws still in effect banning bars and liquor stores (the law reads something like places that gain most of their profit from the sale of alcohol) from being open on Sundays. People have tried to change this law only to be stopped by the liquor store owners who don't want to pay employees an extra day. (That's sort of an unofficial law in Delaware. Find ways not to pay your employees!) I know that some of you are from pretty far away so I should mention that liquor stores are the only places that sell beer in the state of Delaware. You can't go into a convenience store or supermarket and buy beer. Restaurants do sell alcohol and they can remain open on Sunday. The shocked looks on the faces of people from far away used to be one of my rare pleasures as a convenience store clerk. "You don't sell beer here?"

This post isn't about Blue Laws or where you can or can't buy beer. I've lived in Delaware my whole life so I'm more surprised that things are different elsewhere. I just learned about State Line because that's where the entire University of Delaware gets its Sunday beer and that's my alma mater. They don't get a link because they aren't a place I'm recommending to the disabled.

I've written about tastings before but never cited the store. (I should probably get permission to do so but I'll just give my standard offer to take down the post instead.) I learned that drinking helps pain and it has no long term ill effects if you do it in moderation. On tasting nights, State Line will let you pay a tasting fee that has been as low as $10 and as high as $15 for which you can drink sample glasses of high quality and rare beers for the two hour session. They even provide glasses for a refundable $2 deposit.

Tonight was a particularly nice night because I can't stand for two hours so I have left early because my legs were worn out every previous night. Tonight, I mentioned my problem and they presented me with a chair before I could even ask. It was Belgian Ales night so I knew the lines would be horrendous for my Belgians. So, my friends, don't let your disabilities get in the way. If you can't stand, ask for a chair. The fine people at State Line weren't required to provide me with a chair because I'm not required to be there. They did it because they are good people. I see no reason to go to another store ever unless I'm several hundred miles away when I decide to drink. Even then, I decided to shop at State Line before my vacation because of the selection and because I just like the people.

My post election attempt at coming down succeeded and so I slept away about three full days there. I followed that with extensive work on the first draft of another novel project. I finished that draft after two all-nighters in one week. The insomnia is at its worst when I'm doing well on a project. Since then, I lost about three days and had a day when I couldn't sleep at all from pain and the desire to sleep at night. After sleeping most of last night, I slept until 5 PM.

At that point, I was lying in bed feeling miserable and in pain. Wouldn't it just be better to skip the tasting since I knew it would be crowded and I wouldn't be able to stand that long? No. It wouldn't have been better and Melissa played coach again today. She started getting ready to go out before I did. In addition to being delicious, these beer tastings are my major social activity not involving doctors. Where else can you go to dicuss the relative tastiness of hoppy beer versus malty beer in person?

Once I started moving, I felt better and then they let me use the chair. It was a small thing but that's all most of us pain sufferers ask for. Do the small things for us and we'll heft the pain around. Thanks, guys. Now, which tasting will we attend next?

Still Coming Down

The only thing more difficult than sustaining a painful and exhausting offensive is stopping the train and finding some way to relax. I played a tiny part in a massive wave that stopped enemies of the chronic pain community from destroying Medicare and so much more. My efforts were but one grain of sand on a massive beach but the entire beach was made up of individuals doing their tiny parts to make the miracle happen.

Some grains were bigger than others. A guy named Eli (last name withheld on principle) never said a word about being more than just another volunteer. He took on extra responsibility but I figured it was just his turn or something. I didn't know that he was doing some big titled job for Representative John Carney. That didn't stop him from making it possible for me to help represent the disabled community along with many others. I knew he was our leader at the phone banks because of all the extra responsibilities he took on. He drove me home from the phone banks twice when I became hopelessly symptomatic. Why not? He was just the right hand man to a Member of the U.S. House of Representatives. I'm stunned.

I'm having a laugh because I tend to feel impostor syndrome when I find out I've been working with someone like that. I feel like a phony volunteer because I wasn't the best of us all. At this moment, the impostor syndrome is losing badly. I can't fathom that this effort was one iota less than what I was capable of doing when I'm on the verge of collapse more than 24 hours after it was over. I cannot deny the pride I feel at hearing my President thank his volunteers. I was a molecule of well made steel sharpened at the tip of Obama's ground game. Violent imagery doesn't apply here so I'm not taking that further except to say that I was one of the many.

Thankfully, quite a few hours have passed since the previous paragraph. I slept, I slept deepy and I slept for a good long time. It felt awfully good to wake up afterward and have some dinner with Melissa. That was a big step in coming down. Unfortunately, I nearly forgot the next big rule. The reason why I needed to come down was that I needed to rest a good while. It's too soon for major projects or long efforts writing. I'm still in an abnormal amount of pain so I'm going to logoff here.

Coming Down

It's almost a blur. There were three days of excrutiating pain during Hurricane Sandy. Next, we had a pain doc appointment that moved on to the DMV the same day. That was killer. Finally, we had my terror of Republican policies and my need to be relevant combine to force me into three straight days of volunteering to get out the vote on the phones. That all blends into one mass memory of pain. Well, pain and working with like minded people toward a common goal.

It all culminated last night in a moment (before the big moment) when I thought I would pass out. I was crowded into a theater with a few thousand of my closest friends. (Some of them recognized me but that's the uniform. I walk around with long unkept hair, a beard that seems curlier every day, slippers to help remind people how badly I walk if the cane isn't enough and then there's my "overshirt" worn to keep my arms extra warm and sweaty to cut down on RLS/fibromyalgia pain. I call it my disabily uniform.) In any case, a very large gentleman came up right behind me screaming obscenities at the stage where the state party chairman was giving a bad and boring speech. He was screaming these right over my shoulder which was painful and he was looking like someone who wanted to incite a riot. For both reasons, I tuned up my reasonable voice and asked him to stop because he was hurting me. To my shock, he stopped.

After this, a nice lady behind me who had managed to finagle a chair started asking someone to find a chair for me. The previous gentleman insisted on making up his outbursts to me by finding me a chair. Less than a minute later, I was seated happily.

I plan on writing about all these events in detail and getting back to writing fiction (like I ever stopped completely) but I need to rest first. These dream moments can turn into nightmares for those of us with chronic pain if we can't get the brakes to work. Another storm is on its way today so I really need to stop. It's time for some herbal tea and Pearl Jam music.

The Third Day and the Bad News

After surviving the day before Hurricane Sandy brushed us here in New Castle County and the day of the storm, I thought I was done with the agony for a little while. Tuesday ended up being nearly as bad as Monday. On Monday, I gave up all pretenses of being brave and had a cup of herbal tea or a glass with some amaretto in it most of the day. It was best when I was nearly ready to fall asleep. Unfortunately, there are things worse than pain out there.

Remember my sickie buddy? After appearing to be out of the woods, Melissa's Aunt Lois was diagnosed with cancer again. After her heart attack, she cannot handle chemotherapy so the doctors told her that the cancer would probably kill her. My distraught mother-in-law didn't know any details like what stage the cancer was in. All I know is that surrender is out of the question. If I can handle day after day of agony, she can contact one of the national centers of excellence for cancer.

She needs faith that none of her family will abandon her in this fight, faith in her husband to be there for her, her faith in God that she has demonstrated and faith in the medical science that advances every day. She needs goals like contacting a treatment center and doing the things they tell her to do. She needs rewards but I don't know what exactly she likes to do. It's the trinity of survival and I plan to tell her about it when I can. I can be her substitute coach until her husband is ready if necessary. I think he'll do just fine without my help.

At some point, I was so exhausted by Monday's pain that I fell asleep at night. When I woke up on Tuesday, things seemed just fine like they had Monday morning. By Tuesday afternoon, I was ready to cry real tears from the pain alone. I was doing everything I could just to keep pace with the pain. Eventually, I slept like the dead if you'll excuse the expression only to wake up and face Wednesday.

Wednesday is another story for another day.

Howling for You

As far as I remember, song titles are not copyrighted so I can admit I stole the above title from the Black Keys, a band I'm getting into these days. If the Black Keys or their attorney feel differently, I'll be happy to change the title of this post. Okay. That's it for writing humor at the moment. The howling I did was in pain beyond what I was prepared to accept.

Melissa bowed to my hoarder's instincts and brought out her bottle of Amaretto. She poured me a shot in a little glass since I asked her not to use a shot glass. There was no way I was ever going to gulp down a shot of anything again but it mattered with the way my hands were shaking. The good stuff burned just a little but tasted very good. More importantly, it took the edge off my pain. When it came back, I had more warning so a cup of herbal tea helped this time.

By bedtime, I was so exhausted that I fell asleep in bed. That's not something I can do ordinarily but pain is tiring. Unlike the beer, the Amaretto doesn't have to be cold to taste good which would be useful in case of power loss. I got up this morning and read some bad news from a dear acquaintance in PA. This reminded me that some things are worse than pain. I don't have her permission to use her name but she'll know who I'm writing about if she were to read this.

By the time I finished reading, I was feeling a wreck like I was in medicine withdrawal and I realized I hadn't taken my breakfast meds yet. As a normal day sleeper, it isn't unusual for me to take my breakfast meds around 5 PM or so. It was around 2 PM and I wasn't ready to go back to sleep. I took my meds, of course. Then I decided that, if we were going to lose power, I was going to use our modern conveniences while we still had them. I drank some K-cup brewed tea and put on my "overshirt." Between the herbs and the sweat, my meds took effect quickly enough.

I've been hearing reports of power outages moving this way so I better wrap this up. There was what I hope is a great typo on weather.com and not the truth. A headline read that Sussex County was being evacuated including all 25,000 people. There are reasons why this is almost plausible and why it strikes me as absurd. First of all, Sussex is flat and sparsely populated. I joke about it being "Slower Delaware" with the country music and the farms. Still, I'm pretty sure more than 25,000 people live there. If that many people are being evacuated, I wish them well. I'm pretty sure there have to be towns of that size somewhere in Sussex. The rural, slow stuff is less true every year.

The storm hasn't made landfall yet so there is more pain to come. We'll be in a little trouble if we lose power but only if that includes gas. (We're cookin' with gas.) I know what to sniff for in case of a leak which I think is the only issue.

Storm Prepping John Style

Living in Delaware can be such a drag. We get so little exciting weather. There can be a weather map showing the entire Mid-Atlantic region snowed in and there will be a little dot on the map depicting my house. It will have only rained there or had a dusting of snow at most. The boring weather is a double whammy as regular readers know. Rain equals pain.

Last week, I kept hearing rumors of some sort of snow hitting the area and I laughed it off. There was no substance to what I was hearing. I'd catch my favorite WMMR DJs talking about it but just the very end when they were laughing it off. (That's me for you. The station has millions of listeners but I can't resist plugging them.) They got serious enough when the rumors firmed up into Tropical Storm/Hurricane Sandy. Since hurricanes can't really miss you, we started taking the thing seriously in this household. (They can lose strength miraculously and turn into boring old rain storms, of course.)

The final step in taking this thing seriously was the realization that it would probably hit us hard. When the most trusted computer model takes the eye within 25 miles of your home, you have to take it seriously no matter how cynical you are. Besides, as one of those DJs put it, we skeptics can always keep our supplies on hand for the Mayan Apocalypse on December 12th. (Don't worry. That's something in which I truly put no faith.) Hmm...storm supplies. Why did this storm have to hit at the end of the month?

Ever have one of those things you've been meaning to do but never got around to doing? I have a number of those things quite a few of which date back to when I moved here or even when I got sick. We're talking at least a decade of procrastination. So, some company is willing to pay me for the privilege of coming here and towing away what was once a car? Compared to what I had to pay for it, they were paying chump change. Compared to the possible environmental disaster when the toxic chemicals in the thing ate through my garage floor in my own private China Syndrome? It was a good deal.

Most importantly, there was little effort involved. When the prospect of making a phone call to strangers keeps you up all night and then can knock you out for the next week, minimal effort is a big concern. They winched my former car out of the garage, I signed over the title and was given a check that would cover some pretty nice storm groceries. I dislike checks because no one trusts them anymore and it would take my credit union the better part of a week to convert it into spendable money. However, Melissa may have found a way to get the money faster without paying check cashing fees.

If we're lucky, we will have storm groceries shortly after the pain doc appointment tomorrow. Oh...did I "forget" to mention that? Yes, I have a pain doc appointment scheduled for less than two hours after the various weather warnings start to get serious. Let's see. We'll have stress pain from putting together all these plans, pain from the pain doc appointment which always knocks me out, pain from a certain weather system scheduled to pay a visit and the pain of stressing about whether or not the weather will cancel everything but the pain. I will do some serious whining if I don't get my chocolate chip cookie and Diet Wild Cherry Pepsi from Wawa after the pain doc appointment.

Okay. Let's go through the worst case scenario. That would be bad indeed. The worst case scenario would mean that I would have to go to the appointment but the bank would be closed so I couldn't get my money. That would continue to spiral into having to weather the storm with no Diet Cherry Pepsi and chocolate chip cookie plus only five beers to help keep me sedated.

Oh, you were worried about the practical stuff? This is a chronic pain blog but most of you readers might be tempted to intervene if you thought I was in serious trouble. We have plenty of drinking water on hand. We have brand new flashlights with new batteries that have been tested. We have new batteries for the radio which is something they tell you to get. We have regular food and a cooler with cold packs to keep stuff cold without opening the fridge/freezer. We have filled various jugs with water for hygiene purposes. We have candles for that homey quality and to spare the batteries on the flashlights. I have a few days of Depends on hand and about a week's worth of medicine.

We're prepared for the storm or the Mayan Apocalypse or whatever but you don't come here for storm preparedness. This site is about surviving chronic pain. In the most severe circumstances, that is best accomplished with the moderate application of beer. Beer and food that's also bad for you so that you stay in that happy state short of falling asleep but where it is more difficult to stress about everything. I recommend one to two servings of beer per day over short periods of no more than a week. Remember, I am already taxing my liver with narcotics medications. You drink it slowly and enjoy the taste.

Five beers is probably enough for a three day storm if I were to be entirely practical. You just have to remember that I'm not entirely practical especially during and after stress. I want to have a 12 pack or more of extra beer on hand plus the additional Depends I've already gotten. I am a hoarder during my bad days. I may only drink two beers but I want extras just in case I'm trapped under my house and...I'm not quite that bad. I don't have justifications for my hoarding but I feel more comfortable knowing that I will not run out. Having enough keeps me from thinking up nightmare scenarios.

You want a real nightmare scenario? Here goes. I have about a week of meds on hand. What if transportation is messed up by this storm and someone buys up all my meds? What if I run out and start to experience withdrawal? I've been there before and now I'm a hoarder.

I'd rather keep things light so we'll talk about beer and the proper methods of ice cream disposal once power is lost.

So Tired

It's 6:30 AM and I've been up all night again. Why? I've been busy taking one step forward and two steps back. The whole country is doing that ridiculous dance. We took a big step forward in 2008 but a minority of people started pushing back so hard that we barely got our feet down on that one step forward. We fought inch by inch to get a watered down but still positive health care law passed known as the Affordable Care Act. The main beneficiaries in terms of actual dollars were the big insurance companies.

Here's the crux of the law. In exchange for a requirement to offer everyone insurance regardless of health status, they got a requirement for everyone to buy into the insurance system. It sounds fair to me at least from a capitalist point of view. The insurance companies get to tap into the pool of people who are so healthy that they decided against purchasing it in the past. In exchange, they have to offer a few more people coverage. It doesn't actually affect me as of right now. Melissa insures us both through her employer and I buy into Medicare.

Sounds like we should be pretty well covered after we pay our premiums, right? Of course not! The insurance company helps us in one way. It negotiates a lower price for medical services. In order for doctors to practice medicine within the insurance system, they have to agree to accept about 50% of what they charge those outside the system. My insurance isn't helping so much as it's distorting the entire picture of what is going on.

Do I really save half of my true medical costs through my insurance? Of course not! First of all, I'm paying a high premium to take part in this price fixing scheme. There goes much of my savings right there. That's not the real problem. The real problem is that the savings you'd expect only kick in after I meet a deductible. This deductible is about 10% of my annual pre-tax income. No, I'm sorry. That was the case in 2012. In 2013, the deductible will be about 20% of my pre-tax income. This is why I get collection calls.

Some of you may be muttering something about lies, damn lies and statistics right now. The difference between me and most Republicans is that I'll admit that I "massaged" the numbers and tell you how. Melissa's insurance covers us both and is deducted from her pre-tax income on each paycheck. Why did I compare the deductible to my much lower income? I'm the sick one in the family. If Melissa were to remember to take care of herself equally, my medical expenses would still be more than 90% of our total. Since we combine all our resources, my contribution would have to cover the premiums in a fair world.

How did I get to be so expensive? For starters, I've been incontinent my whole life. Try spending $20-$30 a week on what you wish you could just flush. That's when I don't have some sort of head and chest cold. Coughing and sneezing are expensive. My insurance doesn't cover those expenses at all. Let's just assume it's a good month. Good month or bad month, we can't forget my Medicare premiums. Medicare is the real reason why my doctors and I survive. They consider all the money spent toward my regular insurance deductible as money going toward their deductible. I reach the Medicare deductible in a couple of months.

What am I getting for all this money? I'm getting the fragile status quo. Every month, I see my pain doctor (twice this month since it's every 28 days) because the law requires they see me before prescribing narcotic pain medication. I've been on the same dosage of pain meds for a long time now because I'm effectively maxed out. Every 28 days, the law requires me to invest in a doctor visit where I might get an attaboy. I don't complain because it's not their fault.

Prescription drugs are covered by another insurer and this one is very good. My medication co-pays are relatively low yet they add up. My real problem is that I spend all this money to stay at the point where it takes everything I have to survive. There's a great U2 song called "Running to Stand Still" that gets a lot of this point across. I have to take medication to stay at the point where I don't have to cry out in pain most of the time as long as the weather is stable. Even with that medication, I get agitated and the downward cycle begins. The agitation gives me head pain and the twitches. The twitches hurt as the twitching muscles get tired and cramp. This goes on for hours sometimes and I get frustrated which leads to more pain.

If I'm very smart and devote everything to symptom control, I can limit how bad things get sometimes. I doubt I'll ever try to walk on hot coals or anything but I can use meditation to go somewhere outside where the pain is taking place. I can sense it but without feeling it. Of course, putting yourself into a trance while already agitated and in pain is not something to try at home unless you don't have a choice.

There's another problem with devoting everything to pain control. Things don't get done around here. For the moment, I seem to have - knock on wood - stabilized my routines so that major bills get paid more or less on time. Even using pen and paper, it isn't easy trying to chase my bills around when they come more steadily than my income. It's fun trying to convince a utility that a few days doesn't mean much. I know you sent me a bill with a due date for the 15th. The third Wednesday of the month happens to be the 21st. That's when I get paid so that's when you get paid. Deal with it.

Those of us who are very sick need more help not less. The only organization capable of redistributing income on the level that's necessary is the Federal Government. Instead of raising the necessary money from the people who pretend to be "job creators," the big discussion is about making budget cuts to pay down debt. That just reminds me of my current pet peeve (other than the existence of the Republican party) and that is health insurance advertising. I want to scream every time I hear some smarmy announcer explain how his company is going to cut health care costs by making everyone more healthy. There was no healthy choice to prevent me from needing brain surgery and there was no realistic way to prevent me from getting diabetes once I was too sick to exercise. I have the genetic pre-disposition or so it seems.

If health care is a big cost to business and insurers keep offering incentives for "healthy choices," it won't be long before people start losing their jobs for getting sick. It happened to me once long ago while working for a temp agency but they had the easy out of simply ending my contract. Without naming names or companies, my job went to the relative of someone who was sleeping with the big boss. Diabetics lose their jobs on a regular basis as well now. Do sick people need more help or less?

There could be more help coming but this election is huge. Every four years, the Republicans find someone more like Darth Vader to nominate for President. This isn't about any percentage of the population: 99%, 1%, 47% or whatever number we're talking about for the day. This is about 100% of us. No one would truly benefit from a Mittens Presidency. More crony capitalism would damage the economy to the point where the Friends of Mittens can't even make money by moving jobs overseas. Our national security wouldn't benefit from building more battleships when some idiot with a rowboat and an outboard motor packed with explosives can damage them in port.

I'm so tired because people can't see their best interests when they are sitting right under their noses. I'm so tired because I have to struggle while an idiot US Senate candidate talks about balanced budget amendments and not paying Congress when the budget isn't passed. Gee. I guess that means only millionaires can afford to serve in Congress now because Tea Party idiots will never allow a budget to pass on time. A rising tide lifts all boats so why are you trying to sink the country?

Happy Birthday to Me!

Happy Birthday to me! Happy Birthday to me! Glucklich Geburtstag auch. (That's Happy Birthday in German or would be if I had a keyboard with the proper symbols.) I'm 38 years old today and I was actually born pretty close to when I sat down to write this. It was sometime in the 5 AM hour.

Why am I in such a good mood? Well, it's my birthday and I've been promised beer and cake but not at the same time. Normally, I'd enjoy the beer but hold on to a sour mood because of some perceived failure in my life. Yesterday, I had an epiphany about the whole thing. Pierre Robert was doing his Workforce Blocks on WMMR and this can be a little depressing for me. These are blocks (three or more) of songs requested by and dedicated to people in the workforce. I haven't been in the workforce since I was disabled.

Well, an unemployed gentleman requested a block from Pierre and justified it by saying it's hard looking for a job. Pierre can be an elequent gentleman and he gave a little speech about how being unemployed can be a tough job. It's not just the task of looking for a job but all the other little stressors that add up. (That's me summing up Pierre, of course. If you've met him or listened to him you'd know why I have no chance of quoting him successfully.)

It took me a minute but I realized something. Managing this disability is my full-time job. I don't get to leave this job at the end of the day and I don't get days off from it. It's 24/7/365 if you follow that. I get help from others but it is all my job at the end of the day. Those of you who suffer from chronic pain know how it is.

Here's the hard part. Every chance you get, you need to raise a glass (literally or metaphorically) and celebrate the fact that you're still alive. Ups and downs aside, you've done your job and lived another year. It's not just chronic pain either. I lived through bullying and all sorts of abuse but I came through it with the help of a few good people. I had a diagnosed major depression and I lived through that. At 25, I was a newlywed diagnosed with Chiari. Some of you have an idea of what I've been through since then. I've made it to 38 now!

If you think I'm tooting my horn too much, I don't really care but you should remember that personal morale is part of my job. I've been worrying about trying to do so much more than manage my disability and that's foolish. Disability management is too difficult to add other stresses to it. Paying my bills is a good thing and so is writing. Paying my bills lets me enjoy such comforts as light and running water. Writing is something I do first and foremost for me. I want to be that next bestselling author who remains famous for a century or longer but that's not why I do it. It's just what I do.

I'm 38 now and I'm still alive. That gives me more time to make my mark on the world. There's a non-writing project I'd like to attempt and I call it the "Make A (Little) Wish Foundation." I'd like to make it so that survivors of severe trauma could experience something like what the "Make A Wish Foundation" does for kids. We have soldiers returning home without limbs. Maybe they need some new clothes with some special tailoring. I contacted a men's clothing store about that idea and it went nowhere. That's no reason to stop. It's a reason to try again and possibly go bigger. These same people who suffer from traumatic injuries might need help paying for that wheelchair van their families might have to buy. Better yet, there are modifications that can be made to existing cars to allow one to drive without the use of legs. I know that from my time in the spina bifida community. What about stair lifts and sit down showers? The list is endless because disability is so complex.

I've been handicapped and then disabled my whole life. I've managed my own disabilities for most of that time now. This is something to celebrate. I'd like to spend a week or more drinking good beer with old friends and Melissa who counts as both an old friend and the love of my life. That won't happen but today is to remind me to keep the celebration going at least in my heart. Every day is an accomplishment and a step forward.

Thank you to all of you who have sent me birthday greetings. It's much appreciated. Woohoo! Let me cheer you on for all those complexities in your lives. Please feel free to toot your own horns. I don't know your lives well enough. I just know that mine is a special sort of difficult and I've made it another year. 38!

Still Alive (sorta)

Last Monday was my makeup appointment at the pain doc's office for the postponement at the end of September. I should have been happy that I only had to wait an hour past my appointment time to see the doctor. Unfortunately, that was an hour in the main waiting room where CNN was blasting on both TVs. I'm a diehard liberal Democrat but the news failed to catch my attention. For one thing, I heard about the reports they were explaining over and over again at least a week before. The TV wasn't just boring but was genuinely painful.

I'd been worried that I had a worsening problem with sensory overload because the problem has come up recently. Melissa did assure me that the TVs were, in fact, loud. It was like having a bad teacher repeat herself (the anchor at the time was a woman) over and over at top volume. For a brief time, the coverage was so bad that I stopped caring about the election but that was a very brief time.

The next phase of the appointment was a pleasant surprise. A nurse with whom I have had a mostly terrible relationship was nice to me. She asked about taking my vitals and I said no. Instead of arguing, she did what I asked despite the fact that the head doc wants vitals taken. I'm sure he'd be willing to give me a break but I haven't spoken with him yet. My nemesis was polite almost to the point of warmth and explained the reasons for the delay. I know that sounds terrible but I believe in giving credit for people who take steps in the right direction. She took big steps that way. Normally, I don't like being told something I already know like the fact that the day of postponed appointments from the week beforte had to be made up but I appreciated it this time. It let me know that nothing else was going wrong.

My doctor was her usual cooperative self including her explanations for things she couldn't do for me. I like that sort of thing. When I ask someone for something, no has to be an acceptable answer. Otherwise I'm a tyrant and an awfully pathetic one at that. The rest of the appointment was as painless as these things can be. It didn't take long to get home once things got started.

Unfortunately, I was already in a state of terrible agitation with twitching all over. I did what I could about it which was sleep a lot on Monday and Tuesday. By Wednesday, I had what I thought were symptoms I get when I sleep too long all at once. I get congested in all sorts of nasty and unpleasant ways. Worse, I had the cold sweats. It felt as if I hadn't showered in days and all that sweat left me with damp chills. The good news is that there's an easy remedy for feeling dirty. I forced myself to overcome the odd exhaustion that still plagued me and got my shower.

When I got out of the shower, I couldn't dry off because I was sweating so badly. When Melissa fixed dinner, I felt much better. Yay, wifey! On Thursday, I had a terrible sore throat but that was treatable as well. Friday brought false hope. I improved a lot on Friday which is understandable for payday. That just happened to be the night when Melissa had to stay up with me holding my hand because I was miserable. We're talking miserable enough to borrow trouble. If Melissa hadn't been here, I might have given in and found some minor self destructive behavior in which to indulge. She stayed with me and was wonderful.

I woke up on Saturday feeling like an elephant or a certain cat named Meekers was sitting on my chest. I didn't think I could get out of bed but I did. After some medicine and some time in the bathroom, I felt able to breathe. (If you don't understand the bathroom part, try having a coughing or sneezing fit while incontinent.) There was no game plan for the way I felt. Most people would stay in bed but I felt that's what caused the congestion to become so severe so fast.

I tried alternating two strategies. For starters, I stayed upright until I was too exhausted to sit comfortably. That sent me back to bed for six hour stretches. Individual stretches might have been shorter but none were longer. I didn't want to fill up again. Melissa and I spent the time like any self respecting invalids lacking TV reception would. We watched "MASH" on DVD. It's probably my all-time favorite show anyway but, when the alternatives are watch more or stand up, I watched more. I think we've watched ten hours or more in the last 24 real life hours.

As night approached, I started to worsen fairly drastically but I remembered that there's a fever reducer in my narcotic pain meds. I doubt that I ever had a fever but I improved and read a little more about armored vehicles. That's when I came upstairs to play more "Diablo II" and try to avoid the frustration of trying to sleep when our bodies are programmed to feel the worst for the day. So far, so good. I haven't felt the despair of poorly timed insomnia and I should be good and tired when Melissa leaves for the day.

It would be nice to have a good Sunday. I can't watch football but I can hope for pleasant dreams.

Coming Down

I woke up around noon to answer the phone and waited for the "next representative" to have the pleasure of hanging up on a person instead of a machine. I remember that this was slightly more disheartening from my days working on the Dark Side. That's when the significance of those first two words hit me. I woke up which means I had slept. That means my sleepless streak was broken. I wasn't rested by any stretch of the imagination so I went back to sleep. Those are some lovely words. I went back to sleep. Later on, I got up so that I could go upstairs and go back to sleep in bed.

Close to midnight, I got up for real feeling a little disoriented with that euphemistically stated "fuzzy tongue" experience. I've been up for a few hours now yet I think I may be headed back to bed soon. The down cycle is underappreciated. No, I don't appreciate sleep enough. There are enough hours in the day to get things done if you keep it reasonable.

Obviously, reasonable for a Chiarian is not reasonable for a healthy person. I'm happy to accomplish one thing in a day. It doesn't even have to be a completed project. It doesn't even have to be all that much progress in measurable terms. My latest writing project was stalled and I came to the realization that it needed more characters. Who cares that they don't make sense exactly where I introduced them? I can always fix that in the next draft.

Neither routines nor drafts are set in stone. I am a day sleeper yet it's pretty obvious that I don't see the pain doc at night. I break my routines when necessary. In fact, I look forward to breaking routines that fail to amuse me enough.

Well, no sense running off on a tangent because I'm trying to keep this short and sweet. I was right. The bad streaks always end just like the good ones. I stopped trying to make myself sleep and it happened. That's not to say it was easy. I didn't start this insomnia streak by trying to make myself sleep. It started when I was overly excited about a project I was working on and couldn't stop thinking about it. I was pleased at the extra productivity at first. The trying to sleep thing came later.

The bad times always get worse until they get better.

The Down Side of Insomnia

Insomnia is one of those good news/bad news situations. The good news is that you have all sorts of time at your disposal. If it doesn't go to the extreme of literally no sleep, you can be quite productive as an insomniac. My writing projects tend to go well when I can't sleep. "Twice in a Lifetime" would probably be a half written first draft without a period of no sleep. "Angel" is benefiting from this current stretch. I made another breakthrough on how best to get through the difficulty of writing in two general time periods. I skipped it and wrote what happened. A first draft is a slogging process, after all.

Unfortunately, there are limits to what my body and mind can tolerate. Right now, I'm at the point where I cannot stay awake or asleep. I write a few sentences and then my eyes close. I dream something very convincing. It's almost convincing enough to make me believe it as a memory except that it's too weird to withstand more than a few seconds of waking scrutiny. I go back and forth over and over. Those last few seconds of dreaming managed to mix the last few (spoken) lines of Pearl Jam's "Evenflow" with a "Star Wars" theme. It didn't make enough sense for me to go into details.

Yesterday was better. Yesterday started off with me finding a website combining the basic rules of the ancient Asian board game, "Go," with a server for playing it. I was even able to watch a pair of beginners play a game for a while. I want to immerse myself in this ancient game as a way of trying to hold on to my brain power. That requires more than watching a couple of beginners make move after move with no apparent rhyme or reason. Fellow online journaller Magnus Itland just pointed me to a URL that should let me play against the computer. Yes, the computer opponent wiped the floor with me in my first game. I need to have some sort of guiding strategy concerning where I put my stones.

I don't even know for sure if there are any books on Go strategy in print. I had hoped to use the Nook for this but I never did manage to get that upgraded. I have no idea if it's been reduced to the status of expensive paperweight or if Barnes and Noble will take in trade towards an upgrade. Other things came up and overwhelmed my priorities there.

One of the problems of being so far past my limits concerning time spent awake is that everything is overwhelming. Last night, I had a one person flame war on Facebook. I didn't mean to do it but I pushed an old friend's buttons and then she pushed mine. Next thing I knew, I was spiralling out of control mentally. Maybe I'm not sick but just lazy. Maybe our finances would be fine if I weren't always spending all our money. Maybe I'm the root of all that's wrong in the world and that's how you can help yourself by using logical absurdity.

My doctors both mental and physical tell me that my illness is real. They are trained to uncover fakes even those who are fooling themselves. While some of the damage done to me is psychological, the basis of it all is physical. Two centimeters of my brain stem governing autonomic body functions (breathing and heart beat are two common examples but there are so many more) tried to exist in the same space as two centimeters of my spine. No one knows how long this went undiagnosed but it was likely years if not decades. I also have an extreme example of tethered cord syndrome. The physical basis of my illness is the pressure damage to my autonomic nervous system and the spine. My brain sends out some of the wrong signals including pain and jerking movements and my spine garbles some of the signals even further. That's overly simplified and leaves out the damage from the botched first brain surgery but it's more than enough.

I am sick and sick people require more rest not less. I have adaptations that help me live a more normal life but I am crushingly ill on my best days. The Chiarian/Zipperhead motto is, "Be gentle with yourself." I need to remember how to reincorporate that set of adaptations with the ones I use to increase productivity. Maybe a nice cup of my favorite tea might set things on a slightly better path.

Thank God for Melissa in the literal sense. She was tired after a long day at work but she talked me down from the metaphorical ledge. She used my own logic to do it which helped her. I probably could have muddled through it on my own but I didn't have to because I have such a wonderful wife. There is no replacement for the voice of experience whether it comes from your own mind or a coach. This insomnia is becoming unbearable yet I know that it could be a good sign. These long sleeping droughts always break sooner or later. Usually, I feel ready to fall apart then sleep instead.

Insomnia ain't all sunshine and bunnies.

Best Wishes Through Indirect Writing

One thing I try to do here in this blog is be discrete about using names. Someone I care about a lot has become very ill and the news was sudden for me. I guess you might call her an aunt but I know her better on a first name basis. My heart also goes out to her husband, the silent gentle giant of the family. Shortly before my wedding, she had a battle with cancer that she won. Neither of us like to say a whole lot about how we feel although you wouldn't know it in my case. Without ever saying a word, she inspired me to donate platelets when I was active in the Blood Bank. I guess I need to get active again because it appears that her cancer is back. Obviously, those directly involved would know who I am writing about.

She has my full support and love. I wish I could stop right there without explaining but she was unable to quit smoking after her first bout with cancer. As I told her on the phone, it would have been better for her to quit but I've been through quitting back in 1998 or so. It was a miserable experience in some ways comparable with what I go through these days. When I was in Baltimore, I walked past a group smoking out on the street and caught a whiff. The fresh cigarette smoke smelled delicious. All things being equal, I never would have quit.

All things were not equal. I had only been a serious smoker for five years while this special person has smoked most of her life and is considerably older than I am. Melissa had just lost her father to something heart and lung related so his smoking certainly contributed to his death. In my case, I started smoking with my eyes wide open. I knew it was a deadly habit and I wanted it to kill me. By 1998, I hadn't been suicidal in quite a while so smoking no longer made sense. My fellow sickie started smoking in the days before it was known to be so dangerous when society encouraged smoking. She has been told to quit or she will die soon but it will be a struggle nonetheless.

She suffers from a chronic pain disorder and we are careful to avoid comparisons. Boredom is a terrible part of being sick and boredom is a terrible part of quitting smoking. During my brief smoking relapse after being told I needed brain surgery (2000?), I was grateful to have something to occupy my hands. I am a busy person by nature. Right now, I'm physically exhausted and want to go to sleep but I can't handle the distractions. I had to come out to the office and load two very mentally undemanding computer games. By switching back and forth between the two, I was able to stay busy enough without reaching the concentration level that would inflict agony. I had to quit playing one of the games to start writing this.

My sickie buddy is one of the rare people I can stand to be around while feeling less than at my best. My in-laws try very hard and they are also among those people in short doses while Melissa tops the list. The difference with my sickie buddy is that she keeps her voice down because that's what she prefers. I can't imagine her shining a light in my eyes. She remembers to ask before touching me which isn't something where the point is that I'll be likely to say no. It's the recognition that I require a tiny additional layer of space. She offers me a degree of respect that I don't ever expect from others but always appreciate. You either have to live with me like Melissa or live through the experience for yourself to appreciate.

Well, my buddy was admitted to the hospital with breathing problems and it was discovered that she had a mild heart attack. It just goes to show you how advanced modern medicine is that the heart attack was not the cause for immediate concern. Like me but to a more advanced stage, her overall health is more a cause for concern than anything specific. They discovered a spot on her lung where the previous cancer was while investigating the breathing.

I do not know whether the cancer's return is strongly suggested or confirmed as returned at this point. If it has returned, I do not know what stage it would be. I'm thankful that I've never had to know the intimate details of cancer in any form beyond the little I learned in a college course. All I do know is that my buddy was allowed to return home and that it's being treated as good news at this point.

I did hear talk of her running over nurses like I would although I would hope she asked them what lines she really shouldn't cross before doing so. In my hospital trips, the point when I was able to start lobbying to go home effectively was the point where I was declared "better enough." According to the nurses, this was pure coincidence. There was no way they'd send me home before they were good and ready to do so no matter how many tests I refused.

Coming Down Off the Ledge (the slow way)

The title refers to my recent state of mind with a cat joke thrown in for good measure. My cats love to perch on a banister at the top of a stairwell and we fought it for a long time. We were afraid that they would fall and injure themselves. Eventually, we gave up the fight and I now refer to that ledge as the "cat balcony." Both of them fell and merely startled themselves (and me) before walking away unharmed. Now, I forget occasionally and yell at them to come down and then add...the slow way!

So, I was listening to the radio and the newest Shinedown song came on. It's called "Unity" for some reason but the lyrics almost seemed to be reaching out to me. First there's a reference to something not really starting until you're out of hope or something like that. I'm more confident about the chorus. It starts off swimming in a sea of despair then gets to the moment of truth being when you realize that you're not scared. I thought I'd be able to quote it but my head hurts too much. Listening to this song made me remember that I'm not scared.

What helped me reach this conclusion? I was summoned for jury duty. Mail difficulties I've mentioned before that have nothing to do with the Post Office caused me to get this summons fairly late. There was a moment of panic when I couldn't get in touch with anyone at the court but there ended up being a good reason. It was called Labor Day. I got in touch with a court official the next morning who told me exactly what I needed to do. I need to get a document from the Social Security Administration and fax a copy along with a form to the court.

There was no bluster, threatening or deadlines thrown in my face. This is part of the legal process. I'm not asking for any back door favors here. I'm not cutting corners or anything. This wasn't a straw breaking any poor camel's back. It was just another straw and one with which I have some experience. The system is meant to choose jurors qualified to handle the case. I am most decidedly unqualified and any lawyer taking one look at me would have me disqualified in two seconds. The system and I are looking for the same outcome here.

Here's some practical advice while I'm unburdening myself. Social Security Disability is an automatic excuse from jury duty. For once, the executive (Social Security) and the judicial branches of government trust each other to be competent. Social Security put me through a rigorous process before I was qualified for Social Security Disability Income. I suppose they look at it the way I would. That's not something anyone would willing to go through if they just wanted out of jury duty. All you have to do is present proof that you have qualified for SSDI.

This is more along the lines of practical advice. When someone sends you documents, organize and keep them. They can only help you unless someone obtains a search warrant for your house. If you're doing something to justify a legitimate search warrant, I'm not interested in helping you. File boxes are cheap and they prevent the need for frantic searches for documents that might actually be expensive to replace later on. Luckily, Social Security Documents are free even though they are a hassle. It could have been a lot worse. I wish I'd written down this fellow's position when he answered the phone. It would be nice to do a better job documenting the a positive contact with judicial system. They do a good job most of the time and no one ever notices unless they have a complaint.

This somewhat positive partial result has no bearing on a the other crises that are beating down my door symbolically. Then again, it might just help. I've been frustrated about the tasting I won't be able to attend this Thursday night. The first frustrating thing is that it is one of my favorite concepts possible, "Beers of Germany," and we would have the money Friday morning. This is just the monetary "Twilight Zone" of the month. The second point of irritation is that they are serving actual German food instead of the usual pretzels and cheese.

Okay. It's time to stop fretting and remember the trinity here. Nothing in this shakes my faith in God or Melissa. Before I let myself get down for not being able to set aside between 26 and 30 dollars for this one event, it's time to remember what I have done. I have written two drafts of what I consider to be some of my finest fiction work. I have undertaken a major organizational project using the organizer Melissa bought me mostly to serve as a fetish piece. I organized an outing to go see my best friend in another state and overcame all the misgivings about it to complete the task.

As for my treats, I had a great time with my best friend. In addition, all the beers involved in the tasting on Thursday will be on sale the next day. It's not quite as good a deal because I miss out on all the social stuff but I enjoy drinking more when it comes at a slower pace. I might have drunk more than a six pack of beer at the tasting and likely fallen asleep in the car on the way home. I'm hoping to buy twice as much but in slightly smaller batches and really get an idea of what I like. Then again, it takes me much of a six pack to decide whether or not I like a beer and then the rest to enjoy it. Mind you that this is done at a rate of one to (at most) two bottles a night.

Finally, Melissa helped me out of my funk by delving into the DVD collection and watching some good TV episodes with me. We watched the first five episodes of "Burn Notice" Season One most recently and they are great. I picked up on things that proved important later and had some laughs from the special features. The actors are hilarious doing commentary. It's just good to remember things we like to do together.

The headaches are just as bad and the overall body aches are worse but there are good things in life.

PDD: August 2012

This was a bad one but it's easy to admit that it was no one's fault. My regular doctor was out sick so I was thrown back to the lions...err...back into the main group. Please keep in mind that I was in moderate to severe pain before I even arrived for the appointment. The practice had CNN on the TV as is usual but this happened to be during the Republican National Convention so there were lies being repeated left and right all over the place. I was starting off at a pretty high agitation level in any case.

A face more familiar to Melissa than me brought me back to a room I'd never seen before. Turns out there's a new proceedure where you go back to have your vitals updated and then you get back in line for your real appointment. It's gotten to the point where having my vitals taken scares me. I've experienced severe pain from blood pressure cuffs for years but this was a new level of pain. Since this nurse has helped me out on a couple of occasions recently, I did my very best not to complain. Instead, I panted with the pain and the nurse got the point very easily.

The funny part came when they weighed me. I'm not talking the sort of funny that anyone could get but the sort of funny that comes from years of severe pain. I tried to climb on the scale which was to my left only to have my left arm utterly fail on me. I fell against the wall and scared the nurse and Melissa and I insisted on cooperating as best I could. No one will be able to say anything about me being a difficult patient outside hospitals. After this, I was brought to my real room and I came to a horrible yet true conclusion. I was going to be in agony and bored out of my mind at the same time. It shouldn't be possible but I've experienced it more often than I'd care to admit.

There was only one thing left for me to do and that was make a joke out of it. In Las Vegas, you can bet on just about anything or so I have heard. One common bet is the over/under bet. This usually applies to the combined score of two teams in a big game. I joked with Melissa many times that the over/under for pain doc visits was three hours. I believe that is a pretty accurate number when you take the decade or more that I have spent going to the practice especially if you don't take into account the improvements from the clinic system. There have probably been an equal number of visits that took over three hours than those that took under three hours.

When one of my favorite doctors looked slightly dazed from the long day she was facing, I caught up to her to deliver the news. Vegas is taking a beating today. You guys missed the over/under and now all those poor bookies are in trouble. That got me a sympathy laugh.

I left in horrible pain and it took me a week to recover enough to write this. Worse yet, I left in terrible financial straits and with no samples of my most expensive meds. I've since begged for and gotten enough to make it through payday so that helps a lot. I was fretting about spending a whole week going off that medicine and now that doesn't need to happen. Hopefully, the two weeks I'll need before the next visit won't start the next financial crisis.

It's hard to depict just how bad it was last week because I'm so calmed down compared to then. I spent a fair amount of time discussing hopelessness with anyone who would listen. You might say that I'm half a step ahead of those feelings now. I won the small victory over the fear of withdrawal so that helped. It's just hard to see any scenario in which things improve any time soon. I'm beginning to think that death could be a blessing again. Then again, I might just need some more sleep.

It was August with temperatures in the 90s when my Fall/Winter symptoms started to set in this year. There is no such thing as fair so I won't ask what planet that would be fair on. I just feel as if I'm being attacked from all sides again. As if I didn't have enough to worry about, I have to contact the court system and figure out how best to prove I'm disabled. That deadline is approaching fast and I'm so tired. Please make it stop.

The Price Is...Unavoidable

For the last few weeks, I have been writing up a storm. Two drafts of a novella aren't a bad month's production for me. I've been working on my fantasy world as well. With the introductory short stories finished or ready for serious feedback anyway, I started the first novel in the "Book of Names" series. I have been keeping crazy hours working for 24-36 hours at a time and then collapsing in pain and exhaustion.

It wasn't that long ago that I was on the edge of despair. Not only was I in constant extreme pain but I was accomplishing nothing as far as I was concerned. Those of you who have been reading since the beginning might remember the Trinity of Coping. First, you need faith in something to help you through. That's double for me with religious faith and faith in Melissa whom I call my health coach half jokingly. The second and third parts of this trinity are accomplishments and treats. If you accomplish nothing, it leads to feelings of total helplessness which cause you to lose faith among other things. Maybe it's just how I was raised but I find it tough to justify my existence at times even though I know you're not supposed to do that.

The third element is treats. Everyone needs something pleasant to anticipate and that's never more true than it is for someone who is in almost constant pain. If you're lying in bed embracing the peaceful nothingness of meditation because every thought brings too much pain, you need to know that something good will happen soon. We've had some highs and lows at this Stapleford household. The highest high was the week spent soaking in the peace down at Ocean City. The lowest point was losing our cable TV which had been such a dependable source of entertainment. I'm lucky enough to live with my beloved wife who understands this principle.

Recently, I've been working on accomplishments to the best of my ability. As far back as Christmas or Easter, I started a major push on the "Book of Names" project. I asked for and got colored pencils so that I could draw a map on some hex paper I'd printed. This allowed me to determine things like where the characters started, where they needed to end up and what was in between. I've had a book on world creation for a few years which I used to generate some things like what weather to expect and how to keep characters who are hundreds of miles apart on the same timeline.

Then, of course, I had the "Twice in a Lifetime" concept pop into my head. It didn't seem like something I'd get around to writing any time soon but it turned out to be fun. Even if what I've written is utter dreck, I am a writer and producing dreck is part of the process. There's a quote about writing first drafts where someone once said, "I give myself permission to write a shitty first draft." It's okay as long as the second draft is less shitty and so on.

So, what do you think happens when I write for days at a time often until I'm overcome by pain and fatigue? Well, I just told you. I'm overcome by pain and fatigue. I just spent most of two days lying down in a room with no clocks meditating and sleeping back and forth. When the pain is too much to stand while conscious, it's best to be unconscious. There were a number of days lost that way earlier in the week where I was in bed with a view of the clock. The ratio is probably three or four to one of days lost to productive days. Otherwise, I spend all my time lounging about in discomfort severe enough to require all the same medication.

The price is not right but there's no point in dwelling on that. I've already chosen a profession where the perceived cost of entry has dropped so low that there is a belief that anyone can do it. Oddly enough, that actually raises the bar on what you need to do in order to get in. Fewer people are reading fewer authors while the number of people who consider themselves writers has skyrocketed. The odds suck and most people who fail do so because they spend more time thinking of the odds than writing.

The price is too high but I wouldn't be me if I failed to pay it. The price for normal life is way too high for all of us with chronic pain. In order to get something more out of life, I have to be willing to pay an even higher price. Pardon the slightly cynical laugh that you couldn't hear. None of this matters as long as I'm writing dreck except for the fact that I do this sort of thing for myself anyway. I find an amazing degree of joy in creating worlds. Perhaps I enjoy creating people interacting in this world even more. It makes up for a lot to be able to write about a life so different from mine that I could never have lived it. At the same time, these fictional people have to solve the same problems as you and I.

Later this month, I'm going to hang out with my best friend for a few hours in his hometown. It's going to cause me extra pain that I could avoid by not taking the trip. Life is pain so, if you want to live, pain is unavoidable.

The next thing I write might just be about how to cut down on pain at the margins. It's not all about popping pills although they do help the most.

Not the New Normal

After a July so full of pain that I could hardly do anything, I've written two drafts of a new fictional project in August. I hesitate to call it a novel at a mere 185 pages but it could grow into one through future drafts. I didn't bring it up here to brag about it or anything. I'm bringing it up because I've been able to exceed my expectations by so much here in August and because of the topic. It's a story of love and loss due to a fictional terminal disease.

I'm a writer. It's how I self identify and how I choose to interact with the world at large. I'm also someone who lives with chronic pain. I've struggled with the idea of writing a novel about someone surviving my own illness and thriving but that just seemed like wish fulfillment. My abortive attempts felt more like times when I tried to write football stories with me as a star quarterback.

My favorite author, Stephen R. Donaldson, once wrote that he needs the connection of two ideas for a story to come to life. He calls those two ideas the familiar and the exotic. His most famous books are about a leper hero named Thomas Covenant who refuses to accept the magical land he's transported to as real. Donaldson wrote that his father was a specialist doctor in a place where leprosy was common so that was the familiar. The exotic was the idea of someone who didn't believe the story. That was the genesis of "Thomas Covenant, the Unbeliever."

I liked the idea of the familiar and the exotic so I started off with the idea of writing about a sick and dying person. I thought that the exotic might be switching roles and having the sick person not be the protagonist. I would write about a caretaker who loved her instead but that wasn't exotic enough. There was one time when I believed that Melissa had cancer and the idea stuck with me long after cancer was ruled out and the real problem was healed.

The exotic came to me in the form of the "Twilight" books. Why not write about young love and focus my ideas on loving descriptions of people. Forget writing about real looking people! I needed to let myself write through the eyes of someone who had just fallen madly in love for the first time. There was also no reason to be realistic about the illness that's killing her. I needed symptoms that would make a reader wince. I also needed to write something to show how being disabled is okay in the eyes of those who love you. It may not be easy to care for someone like me but that doesn't stop Melissa from loving me.

My main problem with the "Twilight" books is that they promote the idea that a 17 year old can know exactly what she needs in life. I was sure I knew everything at 17 and I can't tell you how many things I had dead wrong. Therefore, I decided to play out a little dark fantasy of my own. If I were to die and leave Melissa behind, I would want her to be happy. In my moments of doubt, I wonder if it might not be better for her to find happiness with someone else now. That's just the doubt talking, of course. Why not give my healthy protagonist a happy ending of sorts.

Since he's not the disabled one, why not make him a tiny bit of a hero? It was the "Twilight" influence again. Why not show that someone who is terminally ill holding the attention of the guy who is just a little tough? Why not mix in some action to ease the "in your face" morals of the story? I would have absolutely no problem with writing a commercial success, of course.

There's a moral to this story as well. I feel crappy again. One part of the trinity of surviving chronic pain is accomplishments. Therefore, I used my insomnia to be productive in between sessions of day sleeping and twitching and I wrote between severe pain attacks. Now I feel crappy but I'm still pleased with myself. It's easier to feel crappy after wearing myself out. It's too damn hard when I start off that way.

The New Normal

I'm going to use certain terms here in this blog and define them as I go. These are personal definitions for things that take place in my life. Where possible, I stick to accepted medical terms but I just don't know them all. My doctors are also too busy to act as my medical dictionary.

The point is that I'm worried about establishing another new normal. You might also call it my baseline level of illness. This is how sick I can expect to be on a daily basis without factoring in any aggravating or mitigating circumstances. Since pretty much any day would have both aggravating and mitigating circumstances, it's a lot of guess work. Experience and input from doctors does help make it an educated guess at least.

A shift in my baseline illness isn't always easy to detect. There are too many aggravating and mitigating factors to explain plus there is a reliable degree of seasonal variation. There are signs that point to a change and I can't help but notice them. It's the sort of information my doctors really need. One sign is that I have a series of good or bad days in a row under a variety of conditions. Another sign is that my coping strategies start to fail. You could call that a bad sign.

I've been going downhill since the beginning of July and this scares me. It's too early for my Fall symptom changes and I have been doing all I can to be better. My summer symptoms are dominated by massive crippling headaches. They can be vise grip headaches where it feels as if someone is trying to crush my scalp or ice pick headaches where the pain is concentrated on a tiny point as if someone is trying to jab...you get the picture.

Right now, I'm suffering from a classic Winter symptom where it feels as if my bones are aching from the inside out. It is worst at the joints but all the major bones seem to come into play. My upper body is worse than the lower probably because I use it more. Then again, I keep my pain patch on my thigh these days so it might have more effect on the lower body. It's better to consider all possibilities but I think it's the greater use.

Yesterday, I had the dizzy headache. There is an area of pain that seems to contain the whole Bermuda triangle (Nope. I'm not a believer. If you combine the number of flights in that area with the unreliable extreme weather, you're just going to lose people.) for my body's internal compass. I can't tell up from down or left from right. Normally, I can still putter along or cling to something until it passes. Yesterday, I had it hit me in the dark right beside the bed. It wasn't the first attack of the day but it was the worst. Earlier, I'd fallen going up the stairs but it was a nice soft fall forward.

The fall on the bed would have been far worse if there hadn't been such a nice surface to land on. I could not get up from my position lying face down. Thankfully, Melissa was there to talk me through it because the Bermuda triangle drowns out all thought. I let gravity slide me off the bed to my knees but that didn't help. I was stuck clinging to the side like I was trying to climb into a boat. Eventually, I used my contact with the bed to guide me up all the way on it and crawled to my pillow. I get angry with myself in situations like this. My inner critic insists that I must look like such a faker to my audience (of one) and so I try to fight my way out of it. It's almost always a bad idea.

I know I can't be the only one with such a harsh inner critic so I hope the rest of you take heart in this. Lay there as long as you need to lay there. Anyone who wants to give you a hard time needs to take a long look inside themselves. I discovered that I was okay lying completely flat but the mere thought of elevating made me dizzy so I just stayed where I was. Melissa coached me through my momentary impatience but she's not always there. Getting up before you're ready is just asking for another fall. I've had falls in doctors' offices where the staff was ready to call an ambulance but I assured them I was okay. All they wanted from me was for me not to hurry.

So, I've had terrible headaches well beyond my normal range that lasted entirely too long. I had severe dizzy symptoms. (I'm trying to relax myself through more of them trying to set in right now. The meditative breathing is helping some.) I'm spending absurd amounts of time in bed. Is this another change in my baseline illness? Am I losing more ground? I don't know yet because there has been a rash of severe weather and I react badly to that.

My confession is that the thought of this as the new normal sent me spiralling downward. I started thinking seriously about death but not in a suicidal way. I was just thinking about signing a DNR order (do not resuscitate) in view of my overall health. With my family history, I'm pretty much guaranteed a heart attack or stroke at a young age. Someone asked about how we handle the things we can't control on a mailing list I enjoy and I tried to answer. My inner critic (in my mother's voice) insists that I put far too many things in that category but my doctors disagree. They agree with me that I can make some improvements at the margins but my main health problems are beyond my control. Of course, signing a DNR without having any life threatening condition in place might not even be allowed so I went to see my coach.

She was struggling with Facebook and this made me think of a few things. One is that I have had major improvements in my activity level since a low last winter. There were days when I only got out of my comfy chair to use the bathroom. I walked up the stairs without thinking about it or planning anything. Melissa resolved her own Facebook issue using methods I taught her. Maybe I should continue trying to cope with things the way they are.

There's plenty of time after a first heart attack or stroke doesn't kill me to sign a DNR or create a living will. There's also no reason why I can't have some quality of life after the worst case scenario. The methods I taught Melissa to control her Facebook issue didn't even exist until after I got sick. I can continue to contribute even if things got so much worse. My pain doc assured me that there are additional steps left to take to control my symptoms.

When I was going into my third year of illness, I knew in my heart that I couldn't survive a third year. That was the beginning of 2003 and things have gotten worse since then. Thankfully, they've also gotten better or else I wouldn't have made it.

Even another retreat to a new normal doesn't have to stop me. Maybe I need to move out of this house that causes so much stress. Why does someone like me live with stairs on a daily basis anyway? There's always a next step. Sometimes, you just have be there to see what it will be. Until then, I will bitch, moan and soldier on.