Monday, February 25, 2013

Ouch to the Nth Degree

On Saturday, I felt terrible but I knew I'd feel better after the beer tasting that night. My head ached and was terribly touch sensitive. The good news was that beer tastings always made me feel better. This time, I felt much better after the tasting. In fact, I felt well enough to drink a lot of water and go right to bed. I fell asleep in bed and still felt better but I never sleep very long after drinking. It was 2-3 hours this time but I had slept during the day on Saturday so there were no worries. I woke up feeling just fine and launched into working on a writing project.

My head and neck started to hurt while this was going on. I kept telling myself that I would go back to bed in a few more minutes. Finally, my world started to cave in. My neck hurt and hurt badly like something was swelling in it and the tooth pain that tells me how far over the line I've gone went from zero to screaming in about two seconds. My head felt like an egg shell covered with nerves where someone had turned it to powder holding its form because of the membrane inside. However, having anything touch my head brought up hideous pain.

When I had my first Chiari brain surgery, the surgeon told me that he had to cut and reattach 30 muscle groups. My neck had about that much strength and the pain was every bit as bad. I was upstairs and all my medication was downstairs. I couldn't help but lie there in bed and moan constantly. At first, I was afraid to wake up Melissa but then I was afraid I couldn't.

I got serious about it and woke her up. After a few seconds of getting from dead asleep to fully awake, she started helping. Did I need medication? Yes. Did I need something to take it with? Yes. My beloved stayed there in bed with me moving as little as possible. I put on my neck brace at her suggestion and it helped me be able to lie there with my head on a pillow. We thought back to the days when things were this out of control frequently.

That helped us remember an icepack for the places where it felt as though the shell membrane of my skull had broken. I used her voice as my initial focus for a calming trance. Amazingly, I was able to breathe well enough after an hour or so of her loving care that I fell back on breathing in and out. Eventually, I made it back to sleep and woke up with a theory. I'm in some sort of sleep deprivation situation.

For a while, I was feeling as if I could accomplish anything. The flu had forced my life to a snail's pace and so I surged ahead when it was over. I was writing and playing "MLB:08" on the PS3 and I was getting important things done. The main problem was my complete failure to rest. Forcing myself into a high state of concentration to hit the fastball but not chase the breaking ball was not rest. The fact that I wasn't quite good enough for the game but was getting closer every day didn't help. I'm as competitive as the next fellow.

The fact that my sports games were the closest I could come to watching sports on TV doesn't help at all. In this fevered pitch of having to be doing something constantly, I was missing doses of medication.

As usual, I have a solution for this problem and it is organization. I need to monitor my medication doses more closely but that's the easy part. What I need more is my rest. I need to organize time each day for rest and meditation. Then there has to be another big block put aside for sleep. I can't ever improve the insomnia without setting aside time to sleep if I'm able.

There are additional technical problems but I have a pain doc appointment today. My pain doc is a genius at getting things done. His solutions will probably be far too type A for me but I can adapt them. Any improvement is better than the current situation by definition.

Tuesday, February 5, 2013

Tragic News

My sickie buddy is dead. Lois was only 63 years old according to Melissa. Her death was not entirely unexpected but the timing was. We thought she had won her second round against lung cancer. First, we were told that the lung cancer would be fatal because her heart was too damaged to try radiation. Next, we were told that a doctor had tried radiation, she had made it and that the cancer was gone. I expected to see her again someday despite my declaration that I'm too sick to make the trip to New York.

Melissa took the phone call and her reaction told me that someone was dead. I feared for her mother and sister but not Lois who was supposed to be on the mend. That's when Melissa asked about her Uncle George and I knew. Uncle George meant that it had to be Lois, his wife since shortly before my wedding. She was sick and expected to die then, too. They hurried their wedding plans because she was so sick then but she rallied and beat lung cancer.

She never stopped being frail so we understood each other. When I visited with her, she kept our surroundings calm and quiet. She would always give me a hug but she never squeezed because she knew it would hurt. She didn't just believe it would hurt but she knew from experience. Trying to manage my own illness over the years made me appreciate her all the more. I never asked her when she was going to get better or any other intrusive health questions and she did the same for me.

Uncle George must be beyond words. I know that I would be. My worst fear is losing Melissa and I can imagine it was the same for him. Now, that worst fear has taken place and there's nothing I can do about it. I guess I'm lucky in a way. (I'm lucky in a lot of ways like having Melissa.) Before this long illness, I took the blame for everything around me. I would have made myself personally responsible for curing George's grief despite knowing better. Grief isn't like some cut that just needs a band-aid. Grief is more like a chronic pain disease. After he gets through these first terrible days and the worse ones that might follow, he'll find a way to manage his grief. If he's incredibly strong, he might even go on with his life. My money is on George.

I haven't even come close to expressing how I feel but I suppose I'll get to that eventually. This makes one fewer person in the world who understands if I may be completely selfish for now.

Friday, February 1, 2013

Not Dead Yet! (Part 1)

There's a line from Monty Python that's so worth stealing that Ricky Buchanan, fellow sickie of Australia, already stole it to be the title of her late lamented online journal. Thankfully, it's also true although it seemed a little closer than I would have liked for a while. In addition to my chronic pain, fatigue and overall icky illness issues, I managed to catch the flu.

It struck like a bolt from the blue sky a couple of Sundays ago. I was playing a PS3 game when exhaustion sent me a warning to shut it all down right then and there. I needed to go to bed. While I was shutting things down, I was hit with such violent shaking that it triggered the headaches I only get after the very worse coughs and sneezes. These are what I imagine whiplash would be like.

I made it up the stairs where Melissa was in bed but not yet asleep thankfully. I called out to her in a panic that I couldn't stop shaking and about the pain it had triggered. She asked if I were cold which should have been a simple enough question but I didn't know. If I were cold, it would have been the worst cold I'd felt in my entire life. After I dove under the covers wearing all of my clothes, she followed and brought along her heating pad. I still shivered for an hour after the sweat started pouring out. I spent the entire next day in bed afraid to venture out until Melissa got home because I might feel that cold again.

She got home shortly after I had gotten brave enough to venture down to the couch away from my ultra-boring bedroom with Gatorade/Powerade. This stuff would end up providing nearly all of my calories for about a week. Food disgusted me except in the smallest quantities but the now sugar free sports drinks tasted good.

I spent a week in a state of being "almost better." It felt as if I needed to get up and do things to "earn my oxygen" yet I found myself staggering back to the couch a few minutes later each time. Within a few days, I found this odd happy medium. There was clear evidence right before me that I was too sick to do anything but cope so I coped. I liked the feeling of knowing my purpose in life. That purpose was to survive and try to feel the best I could feel. Seems like there's a lesson in there somewhere but I'm starting to wear out again already.

There will be more soon but I wanted you to know that I haven't given up.

Friday, January 4, 2013

One Foot Forward

That's the secret to it all. You put one foot in front of the other and, next you know, you're taking that first step. It's a big one but then so is the second. It's all about putting that  next foot forward. You get discouraged and stop but then you start again. Why? It's the only way you know how to live.

I was getting horribly frustrated about the ads for - I believe it is St. Jude's - some children's hospital where Captain Sully, the guy who made an emergency landing of a jetliner on the Hudson River, calls some sick child a real hero. Why not me? What does that kid have that I don't other than a scarier prognosis? I calmed down recently because I'm trying to cut down on anger and because that little girl deserves as many really good days as she can have. Instead of feeling jealous, I want to send her my best wishes for all the good days she can handle.

The point Captain Sully was making is one very near and dear to my heart. There is a degree of heroism inherent in the way those of us with chronic pain live. Airline pilots spend entire careers training and staying ready for a single moment like Sully's Hudson River landing. That's not even mentioning any military careers airline pilots may have had before civilian flying. Those of us living with chronic pain are in training for something as well. We may never know it but we can touch lives.

Someday, I may smile at someone and get them to laugh in the face of their pain. That's victory enough but some of us are fiction writers and prefer the dramatic. What if that person were planning on killing themselves slowly or quickly? What if they were considering taking up smoking like I did purely because I believed it would kill me? What if someone came to you after the worst day to date in their entire illness and you pointed them toward the hope that tomorrow or the next day would probably be better?

You don't even need to reach out. Some of us suffer from terrible social anxiety. Personally, I consider myself to be pretty eloquent at the keyboard but I would stumble over my own name verbally. Live your own life and deal with your own life's obstacles and that makes you a hero. If you fall down, it's not a defeat. It's just another obstacle.

I've taken a lot of falls recently both metaphorical and physical. I stopped taking my diabetes medication and stopped testing blood sugar out of frustration. I stopped using my CPAP machine because I was sleeping better without it due to specific technical issues that can be resolved. There's no need to waste any time of self recrimination and blame. When you're on the ground after a fall, you can choose to lie there and sulk but there will come a point where you start to feel a little ridiculous and you get back up. Then you put one foot in front of the other to take a step. After that, you take another step. Maybe you fall again quickly but you might not. If you do, so what! Get back up and start forward again.

Don't worry. I'm not advocating that you try to get back up and take these steps on your own. If you're lucky, you have family and other loved ones to help you up and to hold your hand as you take the steps. I'm already thinking about who I'll choose to lean on in the coming days.

Captain Sully will almost certainly never make an ad with me as his hero but I believe he's with all of us in spirit. I am hoping to work toward bringing the disabled community together in this networked world. The idea came to me while I was watching an ad for a website for people with MS. It is MSconnect or something very close. A search on that should get you there sooner or later. Their slogan is "give what you know."

MS and Chiari have symptoms similar enough that doctors often mistake one for the other. That makes me believe Zipperheads and whatever silly name MS patients use for themselves could make good allies. The medicine may be very different but let's get connected and work on getting as many solutions as possible for those every day issues that are different for us. I'm giving you what I know and I want what you know. To put my very small notoriety in the Chiari community where my mouth is, write me at staple11@nospam.msn.com (removing the nospam, of course) and I will set you up to post your thoughts on this blog.

We'll make fun of the doctors, share success stories about how we reduced our pain by one metric iota or whatever. Just remember that you're responsible for what you write. Don't libel or slander anyone, please, and don't write any hit pieces. As Debra, a giant in the Chiari community might say, "Be gentle with yourselves and be gentle with each other."

Still Going Strong

I don't want anyone to worry about my last post. Rage is just another symptom now. The most important people in my life are aware of it now and my doctors will be soon. My goal is to just to soldier on. There is a certain degree of bravery involved in enduring something. As long as we do all that we can to cope and to avoid hurting others, we have had a good day. While I won't compare myself to a soldier under fire or some other sort of conventional hero, I can take pride in my endurance.

I was terribly upset because I had hurt my in-laws for no good cause as if there would be a good cause for such a thing. I'd forgotten about Melissa and her uncanny ability to help me. Judy and Barbara seem to have picked up Melissa's method for dealing with my raging moments as well as Melissa herself. They listen to what I'm saying, try to pick out anything of importance - Is he raging because he's overstimulated or because the house is on fire? - and then let the whole thing go when I'm done. It's too much to ask of someone but, as Melissa reminds me, they are family and that's what families are supposed to do. It's a shame I didn't learn that until now.

Looking at rage as just another symptom isn't a cop out. I look at my symptoms straight on and in every other way I can come up with and then work on tactics to deal with them. It sounds silly but I think I'll try counting to ten the next time I feel like lashing out at Melissa. That's what they say to do when you need to pick up a baby when you're frustrated. I'm very thankful that my rage has never been physical because it would not be appropriate to forgive myself so easily.

So, looking at this head on, I'll issue a few apologies and ask for suggestions. At the doctor's office, the docs have me cornered physically whenever they enter the room. As silly as that may sound, it has always made a difference to me. I may have to ask them to turn around and give me a ten count when I can feel myself ready to snap. It can't hurt to ask. In my own home, I can try to wait it out through a ten count and then leave the room if it doesn't work. To my great surprise, there can be big benefits to not leaving the room. If I leave the room, I can always come back.

It doesn't count for much because I haven't exactly caught on with a wide following but let me offer anyone who reads this a blanket apology. If I have insulted you over the past couple of years, I'm sorry. While the circumstances were the fault of no one, I could have handled them better. I'm sorry and now it's time to move on.

Wednesday, January 2, 2013

Rage: the New Old Symptom

I am a pretty even tempered person who has never raised a hand in anger since I was a young child. Therefore, it is pretty disconcerting to feel that seething anger toward well meaning people or situations that are no one's fault. I decided that it was a character flaw and that I was unlikeable. That's when I heard a radio broadcast/PSA on WMMR about traumatic brain injury and rage. The rage they described was unlike anything I've experienced which was why it made some sense to me that there could be a link. I have some significant brain damage but it did not happen suddenly as the result of a mortar shell. God help those vets who are dealing with this all at once. I had time to adapt as the damage was taking place.

Writing this is shaming so I find myself beating around the bush in my head. Every time I go to the pain doc, Melissa has to tell me to calm down. I think I'm just winding up for the potential conflict but the truth is that I've started feeling a towering rage toward people who are trying to help. Usually, they escape the brunt of it because I've loosed it on Melissa accidentally but my cold rage came right out of me toward the pain doc last visit.

It gets worse. Every time I feel my symptoms triggered by having a few people around, the rage builds up in me even worse. Melissa has heard many a tirade about her family whom I consider to be my own. They are wonderful people but they are not silent like I am most of the time. To be more accurate, I am so used to the ambient noise I put out that it feels normal to me. If someone else puts out that same amount of mere background noise, I can feel my temper ticking.

When it explodes, I don't scream and yell while waving my arms wildly. No, I'm much worse than that. I say mean things to those whom I love and/or care about. Those mean things are targeted very carefully to cause maximum hurt per word. My rage is efficient and cold. I want to see my targets flinch or force them to fight back. I accuse my beloved of not loving me though the specifics are not blog appropriate.

Then, the force of the rage is expended and I feel an equally awful sense of loss. How could I possibly say these things to my favorite people? One time, shortly after I started to make the connection, I begged Melissa's forgiveness and she shrugged it off. She had been aware of this for quite some time but had come to the conclusion before I had. She has been willing to consider it another bit of sickness that she vowed to accept in October of 1999.

I need to do something about this. Just because I can justify calling it a symptom does not make it right. It's not only hurtful to others but it hurts me. How long before I lose all distinctions between me and my hot tempered father? Of course, that's another example. The man never actually hauled off and decked me no matter what his urges were. The damage he did was mostly through well targeted comments that might as well have been designed to destroy. He and I both use smart bombs instead of relying on carpet bombing. The target is destroyed but the surrounding area might well not notice.

Usually, these entries are meant to help people by showing them how I survive and handle symptoms but not this one. In this case, I'm asking for help. How do I deal with this towering rage triggered by someone preparing a nice meal and, therefore, banging pots and pans slightly? I'm telling you that this is about people who are trying to help or otherwise be nice to me. If it were about intent to harm me, it would be a pleasure to give them both metaphorical barrels. How do I warn people that this might happen? No one (except possibly you) reads this blog. I am asking your forgiveness in advance until I get this under control.

Thursday, December 27, 2012

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..."