Almost everyone knows the Biblical story of how David killed Goliath. Those who don't tend to have a basic idea of how David the little guy killed Goliath the giant. David knew better than to attempt what we chronic pain survivors attempt. David killed Goliath with a single disabling blow from a sling stone followed up by the coup de grace. He wouldn't have had a chance in a long wrestling match with the giant. The story is that the rules of combat allowed him to gamble to fate of Israel on a single throw of a stone.
In my trinity of survival, I decided not to mention the slightly less important points in order to keep the number to a nice, simple three. Therefore, I didn't get to inspiration. This wasn't a slip on my part but more of a measured decision. I don't get inspired very easily. Little girls with lemonade stands may accomplish great things but there are underappreciatated elements to the story. If I opened a lemonade stand, my lemonade would get moldy or evaporate before anyone noticed it. The little girl needed supporters in order to accomplish anything.
David needed his faith in God to guide his hand. If David didn't have his towering faith, the story becomes that of a very stupid man who got unreasonably lucky. God was David's supporter and the truly inspiring figure in the story. Behind every little girl who goes on TV with a pilot who talks about how brave she is, you have an entire support system. Without them, you would have a tired and scared kid no matter what age she might be.
I take my inspiration from strange places. While you would be well justified to state that I know little about basketball, I draw inspiration from the Philadelphia 76ers. The trend right now is teams attempting to be Goliath. The idea is to get two or three superstars who stand as far above the traditional professional basketball player as those players stand above me. You have teams like the Miami Heat and the Boston Celtics who have a "Big Three." In the case of the Celtics, there is a fourth superstar who was brought in later.
Whether intentionally or not, my Sixers took more of a David approach. Instead of four future Hall of Fame players and eight other guys to carry their luggage, the Sixers crafted a team. Coach Doug Collins had nine or ten players whom he could mix and match against opposing superstars. In a best out of seven series, Goliath beat David but it took seven games. In truth, David lost to Goliath this time largely because David was too nervous to make his foul shots. At that, I'll admit the metaphor has been stretched beyond recognition.
As I struggled to pick out the action on the radio station 97.5 (with another station broadcasting the same game on frequency 97.3), I felt my heart sink a little. Another supporter had fallen even if they never knew that they were supporting me. Slowly but surely, my supporters are failing in this long but terrible struggle. I cannot and do not fault them yet I will fail without them. Just last week, I lost the ability to doze in front of the TV in moments of the worst pain. Yes, I do prefer the radio much of the time but I do not have the choice anymore.
It seems like only yesterday (but it has been much longer) that I lost the ability to confide my deepest, darkest and even potentially deadly secrets with someone whom they would not hurt. Once again, this supporter did what they could going so far beyond the call of duty that there are no words. There was no other choice. Even if they would allow me, I could not let my supporters bleed themselves to death trying to keep me afloat.
This sunburn is the single biggest issue in my life right now but there are pitfalls everywhere. The plumbing in this house is faulty and it nearly wiped us out last Christmas. Support came from out of nowhere in the form of a Roto-Rooter plumber who found a way to make a temporary fix while only charging us the contents of our checking account. That was less than half of what he should have charged so this was an amazing act of charity even as a one time act.
Technically, I should call on my single greatest financial supporter and dump it all on him. He owns the house, after all. Unfortunately, he is doing too much already and one more straw could break his back. This leads me to the biggest of all the losses and the one that connects them all. I was raised to believe that these people are all stronger than I am pretty much by definition. The strong are being forced to pull back step by step.
What form will my collapse take? The good news is in the inevitable dualism. I was raised to believe in my weakness but life has trained me to be clever and strong. It has also taught me that there is no one who will accept my surrender. The sunburn is getting better although it hurts just as much perversely. The blisters and burns left behind damaged skin which got rubbed raw to the point of bleeding a little. Literally in the middle of all the hurt, there is a patch of brand new healthy skin. The damaged stuff should fall off during the next couple of days leaving me with lots of healthy new skin. I may be worried about collapse but there is clear evidence of physical healing.
There is also all that healing I did in Ocean City. For two days straight, I have walked a single bag of trash out to the dumpster before the sun came up. That may sound absurdly conservative but it is more than I was able to do before. If I can keep at it, there's a chance of some important improvements. If even one room is clean and clutter free like that condo, Melissa and I could have a refuge. We could also have a base from which we could work outward.
Sorry, Goliath. I do not know how to surrender.
Monday, May 28, 2012
Friday, May 25, 2012
Second Degree Sunburn
Sorry about not continuing my posts about vacation but I've been busy trying to heal again. Huge blisters formed on both of my legs where some of the worst sunburn can be found. Blisters plus heat and redness equal something I used to joke about: second degree sunburn. I used to joke about it because I wasn't sure it was possible. Could the sun truly deliver a second degree burn?
It was either Tuesday or Wednesday when I woke up to a sight that scared the heck out of me. There was a giant blister on my right leg the size of an egg yolk. It's a strange description but I don't want to be accused of exaggerating. It isn't the size of an entire egg in or out of the shell but it is the size of the yolk from that egg. It's a very similar color as well which is what scared me the most. We all know that yellow is the color of infection and this blister is/was a sickening yellow.
The good news is that it drains completely clear. The yellow is just an optical illusion from looking through the skin. It's full of lymph and not pus. (Lymph is the liquid component of blood.) That's the good news. The other side of it is that I've been "lymphing" steadily enough to soak through all sorts of bandages. Melissa refers to it as weeping but I think that "lymphing" is more fun. She has all her medical books and loves her medical site on the 'net. I prefer my personal experience and the advice of doctors since I've had such a wide variety of what I'll call medical experience. It's a good thing that Melissa told me that lymph is actually slightly yellow from the white blood cells in it. The bandage she removed looked a lot like an aging newspaper so I'd have been looking for infection again.
It's silly of me to worry so much but I hate hospitals beyond reason. I know this and I will admit it is unreasonable as long as I'm not in a hospital at the time. I get the twitches just from visiting someone else in there. Years ago, I had a bad staph infection (which is flesh eating bacteria in the technical sense but not some awful thing from the jungle - it's the same thing that causes strep throat) that didn't respond to antibiotics for a few days as they went up the scale in "power." I don't even remember how to spell the name of the super-bug that was going around at the time but it was pronounced MERSA. That diagnosis got tossed around a bit but I don't know if I ever got it applied to me.
What I do know is that I had a crack on the bottom of my right foot. It was just very dry skin to the point of bleeding a little. On the very day that I broke down and treated it, I woke up with this band of angry red on my leg. If anything touched this band including moving air, I just about hit the ceiling from pain despite my Chiari related pain tolerance. The skin was so tight from swelling that moving the leg also made me want to hit the ceiling. I was freezing cold (in summer) and all I wanted to do was sleep so it was obvious that I had a fever. That was an infection.
This is a little bit of pain with sudden spikes if a cat decides to jump up to visit me and takes the normally safe route across my leg to my lap. Poor Maddie was in my lap but moved onto my left leg for some reason. I startled her so badly that she landed heavily on the (more seriously burned) right leg and tried to stay there for balance. I screamed at her and dumped her off to the floor. Since then, she seems to have learned where to avoid touching me.
The pain has subsided some so I am left with two major issues. One is the fear of an infection landing me in the hospital where I would have to put up with such humiliations as nurses deciding when I do and don't need medication. I've been taking my own medication to some degree or another since I was four. That's something that the pain doc can help by writing my pain scripts for more than I will take. Instead of five breakthrough pills each day whenever I choose to take them, it is one or two every four hours up to a maximum of five.
The diabetes situation is worse. They expect me to eat institutional quality food to start with but the "special diets" take all the remaining flavor away. In every technical sense, they are doing the right thing by forcing me to eat right but how can they expect me to have any sense of morale if they take away my only dependable pleasure in life? As a famous person once wrote, "You don't actually live longer. It just seems like it." Therefore, I will go to great lengths in order to avoid hospitals.
The other non-hypothetical issue facing me is the healing process. I had notions of taking great leaps forward with morning walks, showers and coffee followed by writing productivity. Instead, I have been indoors constantly fearing both getting more sunburn and getting my wounds dirty. Instead of the physical activity and the effects of being outdoors allowing me to sleep well each night, I'm sleeping every other day/night so far. If I'm lucky, the insomnia won't get any worse.
I'm trying to follow the old Chiarian mantra. "Be gentle with yourself."
It was either Tuesday or Wednesday when I woke up to a sight that scared the heck out of me. There was a giant blister on my right leg the size of an egg yolk. It's a strange description but I don't want to be accused of exaggerating. It isn't the size of an entire egg in or out of the shell but it is the size of the yolk from that egg. It's a very similar color as well which is what scared me the most. We all know that yellow is the color of infection and this blister is/was a sickening yellow.
The good news is that it drains completely clear. The yellow is just an optical illusion from looking through the skin. It's full of lymph and not pus. (Lymph is the liquid component of blood.) That's the good news. The other side of it is that I've been "lymphing" steadily enough to soak through all sorts of bandages. Melissa refers to it as weeping but I think that "lymphing" is more fun. She has all her medical books and loves her medical site on the 'net. I prefer my personal experience and the advice of doctors since I've had such a wide variety of what I'll call medical experience. It's a good thing that Melissa told me that lymph is actually slightly yellow from the white blood cells in it. The bandage she removed looked a lot like an aging newspaper so I'd have been looking for infection again.
It's silly of me to worry so much but I hate hospitals beyond reason. I know this and I will admit it is unreasonable as long as I'm not in a hospital at the time. I get the twitches just from visiting someone else in there. Years ago, I had a bad staph infection (which is flesh eating bacteria in the technical sense but not some awful thing from the jungle - it's the same thing that causes strep throat) that didn't respond to antibiotics for a few days as they went up the scale in "power." I don't even remember how to spell the name of the super-bug that was going around at the time but it was pronounced MERSA. That diagnosis got tossed around a bit but I don't know if I ever got it applied to me.
What I do know is that I had a crack on the bottom of my right foot. It was just very dry skin to the point of bleeding a little. On the very day that I broke down and treated it, I woke up with this band of angry red on my leg. If anything touched this band including moving air, I just about hit the ceiling from pain despite my Chiari related pain tolerance. The skin was so tight from swelling that moving the leg also made me want to hit the ceiling. I was freezing cold (in summer) and all I wanted to do was sleep so it was obvious that I had a fever. That was an infection.
This is a little bit of pain with sudden spikes if a cat decides to jump up to visit me and takes the normally safe route across my leg to my lap. Poor Maddie was in my lap but moved onto my left leg for some reason. I startled her so badly that she landed heavily on the (more seriously burned) right leg and tried to stay there for balance. I screamed at her and dumped her off to the floor. Since then, she seems to have learned where to avoid touching me.
The pain has subsided some so I am left with two major issues. One is the fear of an infection landing me in the hospital where I would have to put up with such humiliations as nurses deciding when I do and don't need medication. I've been taking my own medication to some degree or another since I was four. That's something that the pain doc can help by writing my pain scripts for more than I will take. Instead of five breakthrough pills each day whenever I choose to take them, it is one or two every four hours up to a maximum of five.
The diabetes situation is worse. They expect me to eat institutional quality food to start with but the "special diets" take all the remaining flavor away. In every technical sense, they are doing the right thing by forcing me to eat right but how can they expect me to have any sense of morale if they take away my only dependable pleasure in life? As a famous person once wrote, "You don't actually live longer. It just seems like it." Therefore, I will go to great lengths in order to avoid hospitals.
The other non-hypothetical issue facing me is the healing process. I had notions of taking great leaps forward with morning walks, showers and coffee followed by writing productivity. Instead, I have been indoors constantly fearing both getting more sunburn and getting my wounds dirty. Instead of the physical activity and the effects of being outdoors allowing me to sleep well each night, I'm sleeping every other day/night so far. If I'm lucky, the insomnia won't get any worse.
I'm trying to follow the old Chiarian mantra. "Be gentle with yourself."
Tuesday, May 22, 2012
When God Opens a Window...
This is out of chronological sequence and has nothing to do with the vacation. Sorry if that's confusing but I never promised chronological order overall.
Melissa warned me last night not to expect to sleep as well as I had recently. After all, I had slept past noon with the fatigue from the MMRBQ and the severe sunburn. Then I didn't do a whole lot yesterday especially compared to my activities on vacation. I was so injured/sick that I knew better. It was one of those days when you just shut it down and hope that you don't get any worse.
Thus, I was not particularly unhappy when I didn't get to sleep until 7 AM. I was so eager to attack the day that I rolled out of bed on half an hour of sleep at 7:30. Before I could get into the shower, the phone rang and it was my father. He called to tell me that the gift from him of free cable was over. (He brought this up for the first time months ago and gave a very good reason but he's funny about his privacy so I won't try to explain.) In fact, the cable had been shut off overnight while I was trying and failing to sleep. I don't want to get into his reasons so let's just say it was a generous gift way back in 2003 or so and continued to be generous even though we aren't exactly speaking. I may have my differences with him but he is most definitely not a miser. I am not upset with him in any way over this.
Unfortunately, it is still a kick in the ass. The availability of TV has been a major boon to my sanity especially when I'm too sick to do anything or when there's a sporting event on. I was on an amazing high from last week's vacation (despite the sunburn) and so this felt like a sucker punch. Everyone knows the expression, "When God closes a door, he opens a window." In this case, we were blessed with the opportunity to have a wonderful vacation and an old opportunity closed on us.
I'm not writing this to bitch and moan. Honestly, I'm hoping that a strategy to make some lemonade out of this hits me as I write. As much as I'd prefer to deny it, I made a point of watching "Doctor Who" and "Battlestar Galactica" even in Ocean City. Even if all my sports teams fall apart, I'm losing two hours of reliable entertainment during the onset of the worst pain stretches of each day. That's eight hours a week minimum where I will feel worse as a direct result. I never did see the season finale of "Breakout Kings" but that's just the bare minimum of how my strategy for handling Melissa's usual Sunday closing shift will be devastated.
What really pisses me off is that I set myself up for this. Once upon a time, I made a point of not watching TV shows because they could be taken away. I was thinking in terms of series cancellations but the same thing applies here. It's like committing to a relationship. Once you take that leap, you are vulnerable to having something taken away. My entertainment came from books, music on the radio and the 'net with all its wonders.
I need to wrap up this post. There's heavy rain if not a thunderstorm moving in and either one of those will give me a screaming headache. That means I need to find some music, take some medicine and hope my cats will comfort me without stomping on my sunburn.
Melissa warned me last night not to expect to sleep as well as I had recently. After all, I had slept past noon with the fatigue from the MMRBQ and the severe sunburn. Then I didn't do a whole lot yesterday especially compared to my activities on vacation. I was so injured/sick that I knew better. It was one of those days when you just shut it down and hope that you don't get any worse.
Thus, I was not particularly unhappy when I didn't get to sleep until 7 AM. I was so eager to attack the day that I rolled out of bed on half an hour of sleep at 7:30. Before I could get into the shower, the phone rang and it was my father. He called to tell me that the gift from him of free cable was over. (He brought this up for the first time months ago and gave a very good reason but he's funny about his privacy so I won't try to explain.) In fact, the cable had been shut off overnight while I was trying and failing to sleep. I don't want to get into his reasons so let's just say it was a generous gift way back in 2003 or so and continued to be generous even though we aren't exactly speaking. I may have my differences with him but he is most definitely not a miser. I am not upset with him in any way over this.
Unfortunately, it is still a kick in the ass. The availability of TV has been a major boon to my sanity especially when I'm too sick to do anything or when there's a sporting event on. I was on an amazing high from last week's vacation (despite the sunburn) and so this felt like a sucker punch. Everyone knows the expression, "When God closes a door, he opens a window." In this case, we were blessed with the opportunity to have a wonderful vacation and an old opportunity closed on us.
I'm not writing this to bitch and moan. Honestly, I'm hoping that a strategy to make some lemonade out of this hits me as I write. As much as I'd prefer to deny it, I made a point of watching "Doctor Who" and "Battlestar Galactica" even in Ocean City. Even if all my sports teams fall apart, I'm losing two hours of reliable entertainment during the onset of the worst pain stretches of each day. That's eight hours a week minimum where I will feel worse as a direct result. I never did see the season finale of "Breakout Kings" but that's just the bare minimum of how my strategy for handling Melissa's usual Sunday closing shift will be devastated.
What really pisses me off is that I set myself up for this. Once upon a time, I made a point of not watching TV shows because they could be taken away. I was thinking in terms of series cancellations but the same thing applies here. It's like committing to a relationship. Once you take that leap, you are vulnerable to having something taken away. My entertainment came from books, music on the radio and the 'net with all its wonders.
I need to wrap up this post. There's heavy rain if not a thunderstorm moving in and either one of those will give me a screaming headache. That means I need to find some music, take some medicine and hope my cats will comfort me without stomping on my sunburn.
Healing or Over-Planning
I spent the next few days living life to the fullest extent that I can remember. It only rained once and that was just for a couple of hours on a morning when I had slept badly the night before. Since I was still sleepy, I went back to bed and slept until nearly 10 AM. It felt good although I felt a mild regret for the hours I'd lost. When we weren't out on a mission to eat the best available food or find some souvenir for us or for friends, we spent a lot of time outside on the balcony or on the beach watching the water. It felt a little like I was absorbing calm from my environment.
Normally, I spend very little time outdoors and get almost no direct sunlight. In fact, I avoid natural light as if by plan although I believe that it is simply a byproduct of actual plans. When I opened the blinds on the second day of the vacation, I left them open all day. In fact, I kept leaving them open unless we were asleep or out somewhere. There's a line in a Pearl Jam song called "Rearview Mirror" about recovering from child abuse. The singer has left home and feels free. In Eddie Vedder's words, "Finally, the shades are raised." While there are practical reasons for keeping the blinds closed at home including the lack of conveniently placed windows for using natural light, I keep them closed in part out of shame.
Being able to leave the blinds open was a small step but it was symbolic of how I felt in Ocean City. By Monday, I could feel the healing seeping into all aspects of my life. Even my marriage seemed to improve despite the fact that it is the best part of my life at home already. Melissa explained it that the difference might be as simple as being able to speak to each other in a normal tone of voice almost all the time. At home, she might be in the kitchen and I might be watching TV but we have to shout to each other to have any chance of being heard. Even then, it's like playing telephone as a kid where I feel as if every word has been repeated through ten people with a 50/50 chance of being misheard each time. The most repeated word in our marriage is certain to be, "Huh?" Talking between the kitchen and the couch was an easy matter and so was talking between the balcony and the couch. We didn't even have to shout from the bedroom because we were either in there together or one of us was napping.
Even though I have so much trouble walking, I was much more mobile even in the condo versus at home. Thus, I was able to get up and get my own drink/snack and offer to get Melissa something. At home, I stay glued to my recliner and engage in an endless series of "while you're up" requests. That has to wear her down although she denies it most of the time so I made the effort to fend for myself as much as possible. I found us chatting in front of the TV or while she was reading without generating any ill will.
I hope the healing aspect is pretty clear by now because I'm going to get into the second part. How was this healing taking place? Could I find some way to take lessons learned and move them home? I decided that I would get up every day before 8 AM and eat a healthy breakfast that is designed to produce some productive bathroom time. I decided that I was going to get more sun because the light had to be what was making me sleepy enough to sleep through the night every night. I was going to start a major cleaning offensive that would leave the house as clean and free of clutter as the condo and...no pressure there.
There is such a thing as too much of a good thing and that includes planning no matter how hard I try to deny it to myself. My ability to do more at the condo was directly related to the fact that I stopped as soon as it threatened to become too much. There's a note in my private journal where I decided to come inside from the balcony because a headache was threatening. My life was so uncluttered that I was able to drop everything and take my meds right away without ten distractions. Coming home with a detailed plan of how to spend every moment of every day would be like coming home with a car full of souvenirs - more clutter.
Normally, I spend very little time outdoors and get almost no direct sunlight. In fact, I avoid natural light as if by plan although I believe that it is simply a byproduct of actual plans. When I opened the blinds on the second day of the vacation, I left them open all day. In fact, I kept leaving them open unless we were asleep or out somewhere. There's a line in a Pearl Jam song called "Rearview Mirror" about recovering from child abuse. The singer has left home and feels free. In Eddie Vedder's words, "Finally, the shades are raised." While there are practical reasons for keeping the blinds closed at home including the lack of conveniently placed windows for using natural light, I keep them closed in part out of shame.
Being able to leave the blinds open was a small step but it was symbolic of how I felt in Ocean City. By Monday, I could feel the healing seeping into all aspects of my life. Even my marriage seemed to improve despite the fact that it is the best part of my life at home already. Melissa explained it that the difference might be as simple as being able to speak to each other in a normal tone of voice almost all the time. At home, she might be in the kitchen and I might be watching TV but we have to shout to each other to have any chance of being heard. Even then, it's like playing telephone as a kid where I feel as if every word has been repeated through ten people with a 50/50 chance of being misheard each time. The most repeated word in our marriage is certain to be, "Huh?" Talking between the kitchen and the couch was an easy matter and so was talking between the balcony and the couch. We didn't even have to shout from the bedroom because we were either in there together or one of us was napping.
Even though I have so much trouble walking, I was much more mobile even in the condo versus at home. Thus, I was able to get up and get my own drink/snack and offer to get Melissa something. At home, I stay glued to my recliner and engage in an endless series of "while you're up" requests. That has to wear her down although she denies it most of the time so I made the effort to fend for myself as much as possible. I found us chatting in front of the TV or while she was reading without generating any ill will.
I hope the healing aspect is pretty clear by now because I'm going to get into the second part. How was this healing taking place? Could I find some way to take lessons learned and move them home? I decided that I would get up every day before 8 AM and eat a healthy breakfast that is designed to produce some productive bathroom time. I decided that I was going to get more sun because the light had to be what was making me sleepy enough to sleep through the night every night. I was going to start a major cleaning offensive that would leave the house as clean and free of clutter as the condo and...no pressure there.
There is such a thing as too much of a good thing and that includes planning no matter how hard I try to deny it to myself. My ability to do more at the condo was directly related to the fact that I stopped as soon as it threatened to become too much. There's a note in my private journal where I decided to come inside from the balcony because a headache was threatening. My life was so uncluttered that I was able to drop everything and take my meds right away without ten distractions. Coming home with a detailed plan of how to spend every moment of every day would be like coming home with a car full of souvenirs - more clutter.
Monday, May 21, 2012
The Great Crisis: Sunday
Sunday started off pleasantly enough with a cup of average to bad coffee and a sliced apple. Melissa had gone to a tiny supermarket Saturday night that had little to no coffee selection so I ended up with Folgers. I woke up at 7:30 AM after waking up no more than twice in the night. My first thought was attacking the day. This is one of those concepts that I use differently from a lot of others. The attacking part involves getting out of bed and getting into the shower as soon as humanly possible or drinking coffee at home to keep the shower available for Melissa.
This was a glorious shower where I was sure that I had all the time I needed and I wasn't paying for the water. I didn't exactly linger since water isn't something you waste but not having to pay for it directly was a burden off my mind. Coffee and my apple tasted wonderful on the balcony although some nearby construction and the sun chased me inside by 8 AM. (My dislike of direct sunlight will come into play at the end of the week.) It was time to dispense my pills for the week.
I didn't panic when I came up short on pain pills. Obviously, there was an easy explanation involving how I screwed it up. Perhaps I had put my hands on a surplus that even I had forgotten as I came so close to running out. On the other hand, the bottle was dated for the correct date. I tried to suppress my choking sense of panic as it came on. Melissa works for the pharmacy company, after all, but just not in the pharmacy. She would know what to do.
By the time she woke up less than an hour later, I was fighting off my panic with a purely defensive rage. When I get angry, I can hold off my anxiety related symptoms for a little while. Obviously, I had no real reason to be angry until it was proven to be something other than an honest mistake. When Melissa got up, she tried to call the pharmacy that had my meds and had been allowed to fill them under the emergency circumstances. (I have a contract with the pain doc that limits me to a single pharmacy in a single location due to the controlled nature of narcotics medicines.) The fact that we had no house phone and her cell phone coverage was terrible complicated this to the point where I was near panic again.
We decided that we were going to use connections and ask the local pharmacy to allow us to call the one in Delaware. There was no store for the company in Ocean City much to our surprise. Therefore, we went off on a trek to find Berlin, Maryland, the day after making the long drive. I thought my head was going to explode and I discovered that I had used my keychain supply of the medicine while trying not to run out. Therefore, I was in a great mood as we searched for the Berlin pharmacy.
It turned out that Berlin was less than 15 minutes from Ocean City to our good fortune. Melissa identified herself and backed it up with formal identification to the store manager who gave us essentially unlimited access to the phone. (Obviously, we didn't decide to call Alaska for the hell of it anyway. Trust received is almost always rewarded.) The pharmacist on duty had not been there the night when the pills were filled but I was right about the inventory control. In an hour or so, my story was confirmed and I was told that the medicine would be waiting for me in Delaware. Since I almost certainly had enough for the week, I was perfectly happy about this.
In fact, I was ecstatic about the way we had been treated in the Berlin store. (I wish I could use the company name but I could be angry with them in the future. Other companies have retaliated against employees for 'net postings so I must err on the side of caution.) The store manager was not the only one to treat us well. We were allowed to sit in the pharmacy despite not being pharmacy customers for their store. When I pounced on a pharmacist to tell him the story, he took it with good grace despite the fact that I had my pained face on which looks a lot like an angry face and he had nothing to do with the problem. We took the time to do a little shopping for things we had forgotten and all the employees were friendly. Kudos to the Berlin store! I wish I could identify you.
When the pharmacist called back to confirm that he had my pills, I was in considerable pain even by home standards. I was considering skipping the lunch out that I had "extorted" from the all too willing Melissa. We had come to Ocean City for seafood but several rib restaurants caught my eye. We had what might have been our best meal of the whole week at "J.R.'s Ribs" just south of where we stayed on 138th Street.
First of all, this is very relevant to the whole pain blog theme because I arrived in agony. Secondly, it's relevant because "J.R.'s Ribs" might be the best restaurant ever from the point of accomodating special needs. There were few people there and so the hostess allowed me to pick the ideal table from the entire dining area. I had mentioned my criteria of muted lighting, a minimum of hustle and bustle plus having my back to the wall if possible. (There weren't even any Mafia jokes except from me to Melissa privately.) They actually dimmed the lighting in the area without me asking.
Then there was the food...oh, the food. We started off with warm bread and whipped butter which we decided could not be topped. Then our two appetizers arrived. One was onion loaf which looked like a bunch of onion rings that had gotten stuck together in the fryer somehow. I asked about the origin of this but no one could confirm or deny this except to agree that it looked very much like that. Obviously, that couldn't be topped until it was by an Ocean City specialty called crab toast. The simple description of this might be an unbreaded crab cake on a piece of toasted bread topped with cheese. That does not do it or the tartar sauce that comes on the side with it any justice. It is a small slice of heaven that I thought would be the meal's highlight except that I'm sure you're following the theme.
Since the restaurant was all but empty when we arrived, the entrees came out a little sooner than I would have liked but this was okay. I wanted to take the ribs home for dinner anyway. I ate my sides which were good but didn't compare to the rest of the meal but they were sides anyway. I just wanted to taste the one rib in case I didn't like it. I've had experiences with other restaurants where I've taken food home, looked forward to it for hours and then had it disappoint me.
The waitress and the manager both stopped by and seemed so genuinely interested in making us happy over having us spend money that I confided in them. Chances were that the ribs were just cold by my standards since I'm a fanatic about hot entrees. (At home, I've been known to reheat a good dinner in the microwave more than once to enjoy it at the desired temperature.) The waitress took my ribs back to the kitchen where they were reheated and I had another taste. All plans of taking these ribs "home" with me were abandoned. I ate every piece of meat off every bone to the point of checking particles set aside as likely bone, gristle or fat a second time. Most of those turned out to be edible and delicious as well. I do not understand how the ribs managed to have just the right amount of "heat" in the aftertaste without being tangy but they did. Just writing this is making me hungry. Needless to say, I think everyone (especially chronic pain sufferers) should visit "J.R.'s" in Ocean City. Melissa even got a free rose and a discount for Mother's Day.
Unfortunately, my escape from the pain ended with the meal. I was in a crisis when we returned to the condo and was miserable for the five minutes it took me to treat it like a crisis. Melissa made me my favorite herbal tea and then I settled down for a nap/meditation session in the bedroom. It was a success as the pain dropped back down to normal levels.
That night, I discovered something else on the balcony. The condo was literally about the ideal distance away from the main road and from the less traveled road just behind the oceanfront properties. Neither bothered me unless something else was already wrong. We took a little walk down to the beach before bed to see the majesty of the ocean. I enjoyed a bottle of an excellent Belgian white before heading to bed with Melissa. My eyes told me that I would fall asleep standing up if I tried to hold out any longer.
This was a glorious shower where I was sure that I had all the time I needed and I wasn't paying for the water. I didn't exactly linger since water isn't something you waste but not having to pay for it directly was a burden off my mind. Coffee and my apple tasted wonderful on the balcony although some nearby construction and the sun chased me inside by 8 AM. (My dislike of direct sunlight will come into play at the end of the week.) It was time to dispense my pills for the week.
I didn't panic when I came up short on pain pills. Obviously, there was an easy explanation involving how I screwed it up. Perhaps I had put my hands on a surplus that even I had forgotten as I came so close to running out. On the other hand, the bottle was dated for the correct date. I tried to suppress my choking sense of panic as it came on. Melissa works for the pharmacy company, after all, but just not in the pharmacy. She would know what to do.
By the time she woke up less than an hour later, I was fighting off my panic with a purely defensive rage. When I get angry, I can hold off my anxiety related symptoms for a little while. Obviously, I had no real reason to be angry until it was proven to be something other than an honest mistake. When Melissa got up, she tried to call the pharmacy that had my meds and had been allowed to fill them under the emergency circumstances. (I have a contract with the pain doc that limits me to a single pharmacy in a single location due to the controlled nature of narcotics medicines.) The fact that we had no house phone and her cell phone coverage was terrible complicated this to the point where I was near panic again.
We decided that we were going to use connections and ask the local pharmacy to allow us to call the one in Delaware. There was no store for the company in Ocean City much to our surprise. Therefore, we went off on a trek to find Berlin, Maryland, the day after making the long drive. I thought my head was going to explode and I discovered that I had used my keychain supply of the medicine while trying not to run out. Therefore, I was in a great mood as we searched for the Berlin pharmacy.
It turned out that Berlin was less than 15 minutes from Ocean City to our good fortune. Melissa identified herself and backed it up with formal identification to the store manager who gave us essentially unlimited access to the phone. (Obviously, we didn't decide to call Alaska for the hell of it anyway. Trust received is almost always rewarded.) The pharmacist on duty had not been there the night when the pills were filled but I was right about the inventory control. In an hour or so, my story was confirmed and I was told that the medicine would be waiting for me in Delaware. Since I almost certainly had enough for the week, I was perfectly happy about this.
In fact, I was ecstatic about the way we had been treated in the Berlin store. (I wish I could use the company name but I could be angry with them in the future. Other companies have retaliated against employees for 'net postings so I must err on the side of caution.) The store manager was not the only one to treat us well. We were allowed to sit in the pharmacy despite not being pharmacy customers for their store. When I pounced on a pharmacist to tell him the story, he took it with good grace despite the fact that I had my pained face on which looks a lot like an angry face and he had nothing to do with the problem. We took the time to do a little shopping for things we had forgotten and all the employees were friendly. Kudos to the Berlin store! I wish I could identify you.
When the pharmacist called back to confirm that he had my pills, I was in considerable pain even by home standards. I was considering skipping the lunch out that I had "extorted" from the all too willing Melissa. We had come to Ocean City for seafood but several rib restaurants caught my eye. We had what might have been our best meal of the whole week at "J.R.'s Ribs" just south of where we stayed on 138th Street.
First of all, this is very relevant to the whole pain blog theme because I arrived in agony. Secondly, it's relevant because "J.R.'s Ribs" might be the best restaurant ever from the point of accomodating special needs. There were few people there and so the hostess allowed me to pick the ideal table from the entire dining area. I had mentioned my criteria of muted lighting, a minimum of hustle and bustle plus having my back to the wall if possible. (There weren't even any Mafia jokes except from me to Melissa privately.) They actually dimmed the lighting in the area without me asking.
Then there was the food...oh, the food. We started off with warm bread and whipped butter which we decided could not be topped. Then our two appetizers arrived. One was onion loaf which looked like a bunch of onion rings that had gotten stuck together in the fryer somehow. I asked about the origin of this but no one could confirm or deny this except to agree that it looked very much like that. Obviously, that couldn't be topped until it was by an Ocean City specialty called crab toast. The simple description of this might be an unbreaded crab cake on a piece of toasted bread topped with cheese. That does not do it or the tartar sauce that comes on the side with it any justice. It is a small slice of heaven that I thought would be the meal's highlight except that I'm sure you're following the theme.
Since the restaurant was all but empty when we arrived, the entrees came out a little sooner than I would have liked but this was okay. I wanted to take the ribs home for dinner anyway. I ate my sides which were good but didn't compare to the rest of the meal but they were sides anyway. I just wanted to taste the one rib in case I didn't like it. I've had experiences with other restaurants where I've taken food home, looked forward to it for hours and then had it disappoint me.
The waitress and the manager both stopped by and seemed so genuinely interested in making us happy over having us spend money that I confided in them. Chances were that the ribs were just cold by my standards since I'm a fanatic about hot entrees. (At home, I've been known to reheat a good dinner in the microwave more than once to enjoy it at the desired temperature.) The waitress took my ribs back to the kitchen where they were reheated and I had another taste. All plans of taking these ribs "home" with me were abandoned. I ate every piece of meat off every bone to the point of checking particles set aside as likely bone, gristle or fat a second time. Most of those turned out to be edible and delicious as well. I do not understand how the ribs managed to have just the right amount of "heat" in the aftertaste without being tangy but they did. Just writing this is making me hungry. Needless to say, I think everyone (especially chronic pain sufferers) should visit "J.R.'s" in Ocean City. Melissa even got a free rose and a discount for Mother's Day.
Unfortunately, my escape from the pain ended with the meal. I was in a crisis when we returned to the condo and was miserable for the five minutes it took me to treat it like a crisis. Melissa made me my favorite herbal tea and then I settled down for a nap/meditation session in the bedroom. It was a success as the pain dropped back down to normal levels.
That night, I discovered something else on the balcony. The condo was literally about the ideal distance away from the main road and from the less traveled road just behind the oceanfront properties. Neither bothered me unless something else was already wrong. We took a little walk down to the beach before bed to see the majesty of the ocean. I enjoyed a bottle of an excellent Belgian white before heading to bed with Melissa. My eyes told me that I would fall asleep standing up if I tried to hold out any longer.
Travel Day: Saturday
I'm writing this completely from memory because I didn't write in my private journal last Saturday. I was too busy hurrying up, waiting and then rushing. There had been a problem with my breakthrough pain meds on pain doc day. Despite the fact that I was days away at most from running out, the pharmacy was out of the pills. I had counted that I would run out of the pills on Wednesday if I took maximum doses and by Friday in any case.
So, Melissa was out on Friday night on a massive search for a pharmacy in the same company that had my pills. She came through as she always does when something is so important. I may bitch and moan on occasion but she is my life partner and true love in truth in addition to being my wife. She's also helplessly devoted to certain things so she walked in the American Cancer Society's "Relay for Life." Thus, she walked over five miles on the night before we left for vacation. She comes through for everyone unless you give her reason not to.
We had a heck of a time doing last minute packing like always. I hadn't slept, she hadn't slept enough and we hadn't done much of anything to prepare until that day. Even so, we got on the road and we slogged through my travel pain. Just as I thought I was going to explode from frustration, we checked in to find the condo and found the condo.
My first reaction to the condo was slight disappointment. The last one (7 years ago) was bigger. Then I started to settle into the place and realized just how wonderful it was. First of all, the balcony was high enough to see the ocean from it. As Melissa moved all our stuff into the place, I realized just how big it was. It was, in fact, the perfect size. I had plenty of room to sit around especially with the balcony.
Unfortunately, we had just completed a three hour drive and I was beyond tired. Every ache and pain from home was there and I had a few moments of despair. With no reclining chair or kitties for comfort, how was I going to recover? That's when Melissa and I found a couple of pillows that fit just right against the wall so that I could rest my head just right. I suppose it was good that my feeling of being able to "take on the world" was tempered before I could get too sick.
We spent some time on the balcony and used the two AC units to make the place into what many would consider a deep freeze. Much to my surprise, I was ready for bed when Melissa was.
So, Melissa was out on Friday night on a massive search for a pharmacy in the same company that had my pills. She came through as she always does when something is so important. I may bitch and moan on occasion but she is my life partner and true love in truth in addition to being my wife. She's also helplessly devoted to certain things so she walked in the American Cancer Society's "Relay for Life." Thus, she walked over five miles on the night before we left for vacation. She comes through for everyone unless you give her reason not to.
We had a heck of a time doing last minute packing like always. I hadn't slept, she hadn't slept enough and we hadn't done much of anything to prepare until that day. Even so, we got on the road and we slogged through my travel pain. Just as I thought I was going to explode from frustration, we checked in to find the condo and found the condo.
My first reaction to the condo was slight disappointment. The last one (7 years ago) was bigger. Then I started to settle into the place and realized just how wonderful it was. First of all, the balcony was high enough to see the ocean from it. As Melissa moved all our stuff into the place, I realized just how big it was. It was, in fact, the perfect size. I had plenty of room to sit around especially with the balcony.
Unfortunately, we had just completed a three hour drive and I was beyond tired. Every ache and pain from home was there and I had a few moments of despair. With no reclining chair or kitties for comfort, how was I going to recover? That's when Melissa and I found a couple of pillows that fit just right against the wall so that I could rest my head just right. I suppose it was good that my feeling of being able to "take on the world" was tempered before I could get too sick.
We spent some time on the balcony and used the two AC units to make the place into what many would consider a deep freeze. Much to my surprise, I was ready for bed when Melissa was.
PDD: May 2012
My pain doc day was actually May 7th but I had to postpone writing about it for reasons that should seem obvious at the end. After my previous appointment was canceled by the doctor's office, this last one could not have been more...or less...important in the grand scheme. I wanted to document my increasing pain as it spiralled ever upward. I had been worried that I was even starting to exceed my proper dosage of breakthrough pain meds on a regular basis.
Well, circumstances made it so I could not pick those pills I was so worried about without getting a new prescription so I got to see how I handled not having any surplus pills. I did just fine so I was able to go into the appointment without worrying about that. I was, however, very concerned over the pain spiral which continued after a small break.
The pain doc listened to me describe my situation and agreed to keep everything the same for a month while I carried out a plan so secret that I never hinted at it here. I wrote about rewards as the third part in the Trinity of Pain Survival in one of my first entries and mentioned the concert/festival that I attended yesterday as the big reward. Shortly after I wrote that, Melissa and I had several people tell us that we looked beaten down so to speak. Why didn't we get out for more than an evening or a day?
Therefore, Melissa hatched a beautiful plan involving a week-long vacation in Ocean City, Maryland. We belong to a vacation club and have since we got married but we had only used one of our pre-paid weeks in 12 years. This was a waste but the inability to plan ahead had hurt our chances every time. We always chickened out in fear that we didn't have enough money and would lose the week in a cancellation or we'd end up going somewhere on a poverty budget. Melissa's plan avoided those problems beautifully.
Thus, I brought up the advanced concept to my pain doc. We were going to have the most relaxing week that we could manage. We were going to do nothing but eat, drink (beer) and sleep unless the mood struck us. If what I really needed to make my pain improve was relaxation, we would know by the time we got back.
My doctor loved the idea which I'm sure was colored by knowledge of me and how little I drink when I drink. (I don't like the sensation of being drunk because it reminds me of some symptoms.) We spent a little time chatting about details including how excited we were about going. That's a key element of my strategy of rewards. Even a little anticipation adds to the effect because it means you can look forward to something and have a date which will mark one day as something very different.
The reason why I couldn't write about this was that I was leaving my house unattended for more than seven days. I know it's paranoid but you could probably find my address if you chose to waste the time on it. Thus, a thief could have found an unattended house and it would have been an investment for him.
Well, circumstances made it so I could not pick those pills I was so worried about without getting a new prescription so I got to see how I handled not having any surplus pills. I did just fine so I was able to go into the appointment without worrying about that. I was, however, very concerned over the pain spiral which continued after a small break.
The pain doc listened to me describe my situation and agreed to keep everything the same for a month while I carried out a plan so secret that I never hinted at it here. I wrote about rewards as the third part in the Trinity of Pain Survival in one of my first entries and mentioned the concert/festival that I attended yesterday as the big reward. Shortly after I wrote that, Melissa and I had several people tell us that we looked beaten down so to speak. Why didn't we get out for more than an evening or a day?
Therefore, Melissa hatched a beautiful plan involving a week-long vacation in Ocean City, Maryland. We belong to a vacation club and have since we got married but we had only used one of our pre-paid weeks in 12 years. This was a waste but the inability to plan ahead had hurt our chances every time. We always chickened out in fear that we didn't have enough money and would lose the week in a cancellation or we'd end up going somewhere on a poverty budget. Melissa's plan avoided those problems beautifully.
Thus, I brought up the advanced concept to my pain doc. We were going to have the most relaxing week that we could manage. We were going to do nothing but eat, drink (beer) and sleep unless the mood struck us. If what I really needed to make my pain improve was relaxation, we would know by the time we got back.
My doctor loved the idea which I'm sure was colored by knowledge of me and how little I drink when I drink. (I don't like the sensation of being drunk because it reminds me of some symptoms.) We spent a little time chatting about details including how excited we were about going. That's a key element of my strategy of rewards. Even a little anticipation adds to the effect because it means you can look forward to something and have a date which will mark one day as something very different.
The reason why I couldn't write about this was that I was leaving my house unattended for more than seven days. I know it's paranoid but you could probably find my address if you chose to waste the time on it. Thus, a thief could have found an unattended house and it would have been an investment for him.
Tuesday, May 8, 2012
Pitching an Idea
This is a copy of an email I sent out today to a mailing list. Hopefully, it wouldn't offend anyone anyway but I'm pretty sure that emails I write are my intellectual property. I'm almost certain that I'm on safe groud legally but, if anyone has a problem with it, I'll almost certainly delete the post.
Call me silly but I had an idea not too long ago and I decided to act on it today. While I don't have the resources to make donations to all or any of the causes out there that I find most worthwhile, I do have personal experiences. Not all of them are negative. The day when I bought my latest suit way back for my sister's wedding was a great day. Normally, I have very little patience for anything that might focus my attention on my body so trying on clothes tends to be something just short of hell.
Being fitted for a suit at the local "Mens Wearhouse" was a completely different experience. Melissa and I like to note that those of us who are out shape need not look terrible. One of the most important steps in looking good is finding clothes that you would want to wear that also fit you well. Both parts of this are equally important. Someone could probably make clothes to fit me by sewing together pieces of old fashioned potato sacks but I'd look terrible no matter how well it fit.
On that day, the sales associate and I had picked out my usual bland colored clothes that fit reasonably well. Just before she had started chalking them up for tailoring, I saw something that just caught my eye and mentioned it to Melissa. I'd always liked how pinstripe suits looked on other people but I assumed I'd look terrible in them. The associate heard me, disappeared and returned with a pinstripe suit in my approximate size. Over the next few minutes, I fell in love with a suit of clothes. Normally, I prefer male sales associates because there's no worrying about whether or not they think I look repulsive.
This woman associate made me feel utterly comfortable despite the fact that I had essentially undone her work. When I looked at myself in the mirror, I liked what I saw. More importantly, the carefully neutral look on the associate's face was replaced by a genuine looking smile of approval. My parents hate the way I dress 99% of the time. They were worried that I would show up to the wedding looking shabby because I look shabby almost all the time in their opinions. Thus, they contributed money toward the suit so that lack of money would not be the "excuse" that time.
I was worried that they would hate my pinstripe suit and want their money back. Instead, I felt a certain degree of approval from them. Maybe they just behave at weddings because they had been approving at my wedding too but I loved the suit and I still do.
To quote Bill Cosby, "I told you that story so I could tell you this one."
After reading and responding to Jodie's post about bravery, I decided to risk the pain and all involved in most efforts. After looking up contact information on their website, I decided to contact "Mens Wearhouse" and pitch them an idea. I felt foolish because I was talking to someone who was trained to handle customer complaints at a store level but their marketing department is inaccessible to calls or emails.
If I felt so good when I was able to get a suit of clothes that fit so well, how must it feel to have a severe injury or illness that alters your body more visibly than mine. What about all the amputees who have come back from military service, etcetera? What about breast cancer survivors or sufferers? Why not find a way to give these people some help adjusting to their new shapes? Why not help them feel good about themselves even for just a little while?
I hate talking on the phone especially to strangers and I'm already paying for the effort in pain. If I can throw an idea out there that might catch on, it sure would help reduce that shame even if just for a little while.
Call me silly but I had an idea not too long ago and I decided to act on it today. While I don't have the resources to make donations to all or any of the causes out there that I find most worthwhile, I do have personal experiences. Not all of them are negative. The day when I bought my latest suit way back for my sister's wedding was a great day. Normally, I have very little patience for anything that might focus my attention on my body so trying on clothes tends to be something just short of hell.
Being fitted for a suit at the local "Mens Wearhouse" was a completely different experience. Melissa and I like to note that those of us who are out shape need not look terrible. One of the most important steps in looking good is finding clothes that you would want to wear that also fit you well. Both parts of this are equally important. Someone could probably make clothes to fit me by sewing together pieces of old fashioned potato sacks but I'd look terrible no matter how well it fit.
On that day, the sales associate and I had picked out my usual bland colored clothes that fit reasonably well. Just before she had started chalking them up for tailoring, I saw something that just caught my eye and mentioned it to Melissa. I'd always liked how pinstripe suits looked on other people but I assumed I'd look terrible in them. The associate heard me, disappeared and returned with a pinstripe suit in my approximate size. Over the next few minutes, I fell in love with a suit of clothes. Normally, I prefer male sales associates because there's no worrying about whether or not they think I look repulsive.
This woman associate made me feel utterly comfortable despite the fact that I had essentially undone her work. When I looked at myself in the mirror, I liked what I saw. More importantly, the carefully neutral look on the associate's face was replaced by a genuine looking smile of approval. My parents hate the way I dress 99% of the time. They were worried that I would show up to the wedding looking shabby because I look shabby almost all the time in their opinions. Thus, they contributed money toward the suit so that lack of money would not be the "excuse" that time.
I was worried that they would hate my pinstripe suit and want their money back. Instead, I felt a certain degree of approval from them. Maybe they just behave at weddings because they had been approving at my wedding too but I loved the suit and I still do.
To quote Bill Cosby, "I told you that story so I could tell you this one."
After reading and responding to Jodie's post about bravery, I decided to risk the pain and all involved in most efforts. After looking up contact information on their website, I decided to contact "Mens Wearhouse" and pitch them an idea. I felt foolish because I was talking to someone who was trained to handle customer complaints at a store level but their marketing department is inaccessible to calls or emails.
If I felt so good when I was able to get a suit of clothes that fit so well, how must it feel to have a severe injury or illness that alters your body more visibly than mine. What about all the amputees who have come back from military service, etcetera? What about breast cancer survivors or sufferers? Why not find a way to give these people some help adjusting to their new shapes? Why not help them feel good about themselves even for just a little while?
I hate talking on the phone especially to strangers and I'm already paying for the effort in pain. If I can throw an idea out there that might catch on, it sure would help reduce that shame even if just for a little while.
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