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."
Friday, January 4, 2013
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.
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.
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..."
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..."
Wednesday, December 19, 2012
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.
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.
Thursday, November 29, 2012
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.
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.
Tuesday, November 27, 2012
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.
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.
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