As far as I remember, song titles are not copyrighted so I can admit I stole the above title from the Black Keys, a band I'm getting into these days. If the Black Keys or their attorney feel differently, I'll be happy to change the title of this post. Okay. That's it for writing humor at the moment. The howling I did was in pain beyond what I was prepared to accept.
Melissa bowed to my hoarder's instincts and brought out her bottle of Amaretto. She poured me a shot in a little glass since I asked her not to use a shot glass. There was no way I was ever going to gulp down a shot of anything again but it mattered with the way my hands were shaking. The good stuff burned just a little but tasted very good. More importantly, it took the edge off my pain. When it came back, I had more warning so a cup of herbal tea helped this time.
By bedtime, I was so exhausted that I fell asleep in bed. That's not something I can do ordinarily but pain is tiring. Unlike the beer, the Amaretto doesn't have to be cold to taste good which would be useful in case of power loss. I got up this morning and read some bad news from a dear acquaintance in PA. This reminded me that some things are worse than pain. I don't have her permission to use her name but she'll know who I'm writing about if she were to read this.
By the time I finished reading, I was feeling a wreck like I was in medicine withdrawal and I realized I hadn't taken my breakfast meds yet. As a normal day sleeper, it isn't unusual for me to take my breakfast meds around 5 PM or so. It was around 2 PM and I wasn't ready to go back to sleep. I took my meds, of course. Then I decided that, if we were going to lose power, I was going to use our modern conveniences while we still had them. I drank some K-cup brewed tea and put on my "overshirt." Between the herbs and the sweat, my meds took effect quickly enough.
I've been hearing reports of power outages moving this way so I better wrap this up. There was what I hope is a great typo on weather.com and not the truth. A headline read that Sussex County was being evacuated including all 25,000 people. There are reasons why this is almost plausible and why it strikes me as absurd. First of all, Sussex is flat and sparsely populated. I joke about it being "Slower Delaware" with the country music and the farms. Still, I'm pretty sure more than 25,000 people live there. If that many people are being evacuated, I wish them well. I'm pretty sure there have to be towns of that size somewhere in Sussex. The rural, slow stuff is less true every year.
The storm hasn't made landfall yet so there is more pain to come. We'll be in a little trouble if we lose power but only if that includes gas. (We're cookin' with gas.) I know what to sniff for in case of a leak which I think is the only issue.
Monday, October 29, 2012
Sunday, October 28, 2012
Storm Prepping John Style
Living in Delaware can be such a drag. We get so little exciting weather. There can be a weather map showing the entire Mid-Atlantic region snowed in and there will be a little dot on the map depicting my house. It will have only rained there or had a dusting of snow at most. The boring weather is a double whammy as regular readers know. Rain equals pain.
Last week, I kept hearing rumors of some sort of snow hitting the area and I laughed it off. There was no substance to what I was hearing. I'd catch my favorite WMMR DJs talking about it but just the very end when they were laughing it off. (That's me for you. The station has millions of listeners but I can't resist plugging them.) They got serious enough when the rumors firmed up into Tropical Storm/Hurricane Sandy. Since hurricanes can't really miss you, we started taking the thing seriously in this household. (They can lose strength miraculously and turn into boring old rain storms, of course.)
The final step in taking this thing seriously was the realization that it would probably hit us hard. When the most trusted computer model takes the eye within 25 miles of your home, you have to take it seriously no matter how cynical you are. Besides, as one of those DJs put it, we skeptics can always keep our supplies on hand for the Mayan Apocalypse on December 12th. (Don't worry. That's something in which I truly put no faith.) Hmm...storm supplies. Why did this storm have to hit at the end of the month?
Ever have one of those things you've been meaning to do but never got around to doing? I have a number of those things quite a few of which date back to when I moved here or even when I got sick. We're talking at least a decade of procrastination. So, some company is willing to pay me for the privilege of coming here and towing away what was once a car? Compared to what I had to pay for it, they were paying chump change. Compared to the possible environmental disaster when the toxic chemicals in the thing ate through my garage floor in my own private China Syndrome? It was a good deal.
Most importantly, there was little effort involved. When the prospect of making a phone call to strangers keeps you up all night and then can knock you out for the next week, minimal effort is a big concern. They winched my former car out of the garage, I signed over the title and was given a check that would cover some pretty nice storm groceries. I dislike checks because no one trusts them anymore and it would take my credit union the better part of a week to convert it into spendable money. However, Melissa may have found a way to get the money faster without paying check cashing fees.
If we're lucky, we will have storm groceries shortly after the pain doc appointment tomorrow. Oh...did I "forget" to mention that? Yes, I have a pain doc appointment scheduled for less than two hours after the various weather warnings start to get serious. Let's see. We'll have stress pain from putting together all these plans, pain from the pain doc appointment which always knocks me out, pain from a certain weather system scheduled to pay a visit and the pain of stressing about whether or not the weather will cancel everything but the pain. I will do some serious whining if I don't get my chocolate chip cookie and Diet Wild Cherry Pepsi from Wawa after the pain doc appointment.
Okay. Let's go through the worst case scenario. That would be bad indeed. The worst case scenario would mean that I would have to go to the appointment but the bank would be closed so I couldn't get my money. That would continue to spiral into having to weather the storm with no Diet Cherry Pepsi and chocolate chip cookie plus only five beers to help keep me sedated.
Oh, you were worried about the practical stuff? This is a chronic pain blog but most of you readers might be tempted to intervene if you thought I was in serious trouble. We have plenty of drinking water on hand. We have brand new flashlights with new batteries that have been tested. We have new batteries for the radio which is something they tell you to get. We have regular food and a cooler with cold packs to keep stuff cold without opening the fridge/freezer. We have filled various jugs with water for hygiene purposes. We have candles for that homey quality and to spare the batteries on the flashlights. I have a few days of Depends on hand and about a week's worth of medicine.
We're prepared for the storm or the Mayan Apocalypse or whatever but you don't come here for storm preparedness. This site is about surviving chronic pain. In the most severe circumstances, that is best accomplished with the moderate application of beer. Beer and food that's also bad for you so that you stay in that happy state short of falling asleep but where it is more difficult to stress about everything. I recommend one to two servings of beer per day over short periods of no more than a week. Remember, I am already taxing my liver with narcotics medications. You drink it slowly and enjoy the taste.
Five beers is probably enough for a three day storm if I were to be entirely practical. You just have to remember that I'm not entirely practical especially during and after stress. I want to have a 12 pack or more of extra beer on hand plus the additional Depends I've already gotten. I am a hoarder during my bad days. I may only drink two beers but I want extras just in case I'm trapped under my house and...I'm not quite that bad. I don't have justifications for my hoarding but I feel more comfortable knowing that I will not run out. Having enough keeps me from thinking up nightmare scenarios.
You want a real nightmare scenario? Here goes. I have about a week of meds on hand. What if transportation is messed up by this storm and someone buys up all my meds? What if I run out and start to experience withdrawal? I've been there before and now I'm a hoarder.
I'd rather keep things light so we'll talk about beer and the proper methods of ice cream disposal once power is lost.
Last week, I kept hearing rumors of some sort of snow hitting the area and I laughed it off. There was no substance to what I was hearing. I'd catch my favorite WMMR DJs talking about it but just the very end when they were laughing it off. (That's me for you. The station has millions of listeners but I can't resist plugging them.) They got serious enough when the rumors firmed up into Tropical Storm/Hurricane Sandy. Since hurricanes can't really miss you, we started taking the thing seriously in this household. (They can lose strength miraculously and turn into boring old rain storms, of course.)
The final step in taking this thing seriously was the realization that it would probably hit us hard. When the most trusted computer model takes the eye within 25 miles of your home, you have to take it seriously no matter how cynical you are. Besides, as one of those DJs put it, we skeptics can always keep our supplies on hand for the Mayan Apocalypse on December 12th. (Don't worry. That's something in which I truly put no faith.) Hmm...storm supplies. Why did this storm have to hit at the end of the month?
Ever have one of those things you've been meaning to do but never got around to doing? I have a number of those things quite a few of which date back to when I moved here or even when I got sick. We're talking at least a decade of procrastination. So, some company is willing to pay me for the privilege of coming here and towing away what was once a car? Compared to what I had to pay for it, they were paying chump change. Compared to the possible environmental disaster when the toxic chemicals in the thing ate through my garage floor in my own private China Syndrome? It was a good deal.
Most importantly, there was little effort involved. When the prospect of making a phone call to strangers keeps you up all night and then can knock you out for the next week, minimal effort is a big concern. They winched my former car out of the garage, I signed over the title and was given a check that would cover some pretty nice storm groceries. I dislike checks because no one trusts them anymore and it would take my credit union the better part of a week to convert it into spendable money. However, Melissa may have found a way to get the money faster without paying check cashing fees.
If we're lucky, we will have storm groceries shortly after the pain doc appointment tomorrow. Oh...did I "forget" to mention that? Yes, I have a pain doc appointment scheduled for less than two hours after the various weather warnings start to get serious. Let's see. We'll have stress pain from putting together all these plans, pain from the pain doc appointment which always knocks me out, pain from a certain weather system scheduled to pay a visit and the pain of stressing about whether or not the weather will cancel everything but the pain. I will do some serious whining if I don't get my chocolate chip cookie and Diet Wild Cherry Pepsi from Wawa after the pain doc appointment.
Okay. Let's go through the worst case scenario. That would be bad indeed. The worst case scenario would mean that I would have to go to the appointment but the bank would be closed so I couldn't get my money. That would continue to spiral into having to weather the storm with no Diet Cherry Pepsi and chocolate chip cookie plus only five beers to help keep me sedated.
Oh, you were worried about the practical stuff? This is a chronic pain blog but most of you readers might be tempted to intervene if you thought I was in serious trouble. We have plenty of drinking water on hand. We have brand new flashlights with new batteries that have been tested. We have new batteries for the radio which is something they tell you to get. We have regular food and a cooler with cold packs to keep stuff cold without opening the fridge/freezer. We have filled various jugs with water for hygiene purposes. We have candles for that homey quality and to spare the batteries on the flashlights. I have a few days of Depends on hand and about a week's worth of medicine.
We're prepared for the storm or the Mayan Apocalypse or whatever but you don't come here for storm preparedness. This site is about surviving chronic pain. In the most severe circumstances, that is best accomplished with the moderate application of beer. Beer and food that's also bad for you so that you stay in that happy state short of falling asleep but where it is more difficult to stress about everything. I recommend one to two servings of beer per day over short periods of no more than a week. Remember, I am already taxing my liver with narcotics medications. You drink it slowly and enjoy the taste.
Five beers is probably enough for a three day storm if I were to be entirely practical. You just have to remember that I'm not entirely practical especially during and after stress. I want to have a 12 pack or more of extra beer on hand plus the additional Depends I've already gotten. I am a hoarder during my bad days. I may only drink two beers but I want extras just in case I'm trapped under my house and...I'm not quite that bad. I don't have justifications for my hoarding but I feel more comfortable knowing that I will not run out. Having enough keeps me from thinking up nightmare scenarios.
You want a real nightmare scenario? Here goes. I have about a week of meds on hand. What if transportation is messed up by this storm and someone buys up all my meds? What if I run out and start to experience withdrawal? I've been there before and now I'm a hoarder.
I'd rather keep things light so we'll talk about beer and the proper methods of ice cream disposal once power is lost.
Thursday, October 25, 2012
So Tired
It's 6:30 AM and I've been up all night again. Why? I've been busy taking one step forward and two steps back. The whole country is doing that ridiculous dance. We took a big step forward in 2008 but a minority of people started pushing back so hard that we barely got our feet down on that one step forward. We fought inch by inch to get a watered down but still positive health care law passed known as the Affordable Care Act. The main beneficiaries in terms of actual dollars were the big insurance companies.
Here's the crux of the law. In exchange for a requirement to offer everyone insurance regardless of health status, they got a requirement for everyone to buy into the insurance system. It sounds fair to me at least from a capitalist point of view. The insurance companies get to tap into the pool of people who are so healthy that they decided against purchasing it in the past. In exchange, they have to offer a few more people coverage. It doesn't actually affect me as of right now. Melissa insures us both through her employer and I buy into Medicare.
Sounds like we should be pretty well covered after we pay our premiums, right? Of course not! The insurance company helps us in one way. It negotiates a lower price for medical services. In order for doctors to practice medicine within the insurance system, they have to agree to accept about 50% of what they charge those outside the system. My insurance isn't helping so much as it's distorting the entire picture of what is going on.
Do I really save half of my true medical costs through my insurance? Of course not! First of all, I'm paying a high premium to take part in this price fixing scheme. There goes much of my savings right there. That's not the real problem. The real problem is that the savings you'd expect only kick in after I meet a deductible. This deductible is about 10% of my annual pre-tax income. No, I'm sorry. That was the case in 2012. In 2013, the deductible will be about 20% of my pre-tax income. This is why I get collection calls.
Some of you may be muttering something about lies, damn lies and statistics right now. The difference between me and most Republicans is that I'll admit that I "massaged" the numbers and tell you how. Melissa's insurance covers us both and is deducted from her pre-tax income on each paycheck. Why did I compare the deductible to my much lower income? I'm the sick one in the family. If Melissa were to remember to take care of herself equally, my medical expenses would still be more than 90% of our total. Since we combine all our resources, my contribution would have to cover the premiums in a fair world.
How did I get to be so expensive? For starters, I've been incontinent my whole life. Try spending $20-$30 a week on what you wish you could just flush. That's when I don't have some sort of head and chest cold. Coughing and sneezing are expensive. My insurance doesn't cover those expenses at all. Let's just assume it's a good month. Good month or bad month, we can't forget my Medicare premiums. Medicare is the real reason why my doctors and I survive. They consider all the money spent toward my regular insurance deductible as money going toward their deductible. I reach the Medicare deductible in a couple of months.
What am I getting for all this money? I'm getting the fragile status quo. Every month, I see my pain doctor (twice this month since it's every 28 days) because the law requires they see me before prescribing narcotic pain medication. I've been on the same dosage of pain meds for a long time now because I'm effectively maxed out. Every 28 days, the law requires me to invest in a doctor visit where I might get an attaboy. I don't complain because it's not their fault.
Prescription drugs are covered by another insurer and this one is very good. My medication co-pays are relatively low yet they add up. My real problem is that I spend all this money to stay at the point where it takes everything I have to survive. There's a great U2 song called "Running to Stand Still" that gets a lot of this point across. I have to take medication to stay at the point where I don't have to cry out in pain most of the time as long as the weather is stable. Even with that medication, I get agitated and the downward cycle begins. The agitation gives me head pain and the twitches. The twitches hurt as the twitching muscles get tired and cramp. This goes on for hours sometimes and I get frustrated which leads to more pain.
If I'm very smart and devote everything to symptom control, I can limit how bad things get sometimes. I doubt I'll ever try to walk on hot coals or anything but I can use meditation to go somewhere outside where the pain is taking place. I can sense it but without feeling it. Of course, putting yourself into a trance while already agitated and in pain is not something to try at home unless you don't have a choice.
There's another problem with devoting everything to pain control. Things don't get done around here. For the moment, I seem to have - knock on wood - stabilized my routines so that major bills get paid more or less on time. Even using pen and paper, it isn't easy trying to chase my bills around when they come more steadily than my income. It's fun trying to convince a utility that a few days doesn't mean much. I know you sent me a bill with a due date for the 15th. The third Wednesday of the month happens to be the 21st. That's when I get paid so that's when you get paid. Deal with it.
Those of us who are very sick need more help not less. The only organization capable of redistributing income on the level that's necessary is the Federal Government. Instead of raising the necessary money from the people who pretend to be "job creators," the big discussion is about making budget cuts to pay down debt. That just reminds me of my current pet peeve (other than the existence of the Republican party) and that is health insurance advertising. I want to scream every time I hear some smarmy announcer explain how his company is going to cut health care costs by making everyone more healthy. There was no healthy choice to prevent me from needing brain surgery and there was no realistic way to prevent me from getting diabetes once I was too sick to exercise. I have the genetic pre-disposition or so it seems.
If health care is a big cost to business and insurers keep offering incentives for "healthy choices," it won't be long before people start losing their jobs for getting sick. It happened to me once long ago while working for a temp agency but they had the easy out of simply ending my contract. Without naming names or companies, my job went to the relative of someone who was sleeping with the big boss. Diabetics lose their jobs on a regular basis as well now. Do sick people need more help or less?
There could be more help coming but this election is huge. Every four years, the Republicans find someone more like Darth Vader to nominate for President. This isn't about any percentage of the population: 99%, 1%, 47% or whatever number we're talking about for the day. This is about 100% of us. No one would truly benefit from a Mittens Presidency. More crony capitalism would damage the economy to the point where the Friends of Mittens can't even make money by moving jobs overseas. Our national security wouldn't benefit from building more battleships when some idiot with a rowboat and an outboard motor packed with explosives can damage them in port.
I'm so tired because people can't see their best interests when they are sitting right under their noses. I'm so tired because I have to struggle while an idiot US Senate candidate talks about balanced budget amendments and not paying Congress when the budget isn't passed. Gee. I guess that means only millionaires can afford to serve in Congress now because Tea Party idiots will never allow a budget to pass on time. A rising tide lifts all boats so why are you trying to sink the country?
Here's the crux of the law. In exchange for a requirement to offer everyone insurance regardless of health status, they got a requirement for everyone to buy into the insurance system. It sounds fair to me at least from a capitalist point of view. The insurance companies get to tap into the pool of people who are so healthy that they decided against purchasing it in the past. In exchange, they have to offer a few more people coverage. It doesn't actually affect me as of right now. Melissa insures us both through her employer and I buy into Medicare.
Sounds like we should be pretty well covered after we pay our premiums, right? Of course not! The insurance company helps us in one way. It negotiates a lower price for medical services. In order for doctors to practice medicine within the insurance system, they have to agree to accept about 50% of what they charge those outside the system. My insurance isn't helping so much as it's distorting the entire picture of what is going on.
Do I really save half of my true medical costs through my insurance? Of course not! First of all, I'm paying a high premium to take part in this price fixing scheme. There goes much of my savings right there. That's not the real problem. The real problem is that the savings you'd expect only kick in after I meet a deductible. This deductible is about 10% of my annual pre-tax income. No, I'm sorry. That was the case in 2012. In 2013, the deductible will be about 20% of my pre-tax income. This is why I get collection calls.
Some of you may be muttering something about lies, damn lies and statistics right now. The difference between me and most Republicans is that I'll admit that I "massaged" the numbers and tell you how. Melissa's insurance covers us both and is deducted from her pre-tax income on each paycheck. Why did I compare the deductible to my much lower income? I'm the sick one in the family. If Melissa were to remember to take care of herself equally, my medical expenses would still be more than 90% of our total. Since we combine all our resources, my contribution would have to cover the premiums in a fair world.
How did I get to be so expensive? For starters, I've been incontinent my whole life. Try spending $20-$30 a week on what you wish you could just flush. That's when I don't have some sort of head and chest cold. Coughing and sneezing are expensive. My insurance doesn't cover those expenses at all. Let's just assume it's a good month. Good month or bad month, we can't forget my Medicare premiums. Medicare is the real reason why my doctors and I survive. They consider all the money spent toward my regular insurance deductible as money going toward their deductible. I reach the Medicare deductible in a couple of months.
What am I getting for all this money? I'm getting the fragile status quo. Every month, I see my pain doctor (twice this month since it's every 28 days) because the law requires they see me before prescribing narcotic pain medication. I've been on the same dosage of pain meds for a long time now because I'm effectively maxed out. Every 28 days, the law requires me to invest in a doctor visit where I might get an attaboy. I don't complain because it's not their fault.
Prescription drugs are covered by another insurer and this one is very good. My medication co-pays are relatively low yet they add up. My real problem is that I spend all this money to stay at the point where it takes everything I have to survive. There's a great U2 song called "Running to Stand Still" that gets a lot of this point across. I have to take medication to stay at the point where I don't have to cry out in pain most of the time as long as the weather is stable. Even with that medication, I get agitated and the downward cycle begins. The agitation gives me head pain and the twitches. The twitches hurt as the twitching muscles get tired and cramp. This goes on for hours sometimes and I get frustrated which leads to more pain.
If I'm very smart and devote everything to symptom control, I can limit how bad things get sometimes. I doubt I'll ever try to walk on hot coals or anything but I can use meditation to go somewhere outside where the pain is taking place. I can sense it but without feeling it. Of course, putting yourself into a trance while already agitated and in pain is not something to try at home unless you don't have a choice.
There's another problem with devoting everything to pain control. Things don't get done around here. For the moment, I seem to have - knock on wood - stabilized my routines so that major bills get paid more or less on time. Even using pen and paper, it isn't easy trying to chase my bills around when they come more steadily than my income. It's fun trying to convince a utility that a few days doesn't mean much. I know you sent me a bill with a due date for the 15th. The third Wednesday of the month happens to be the 21st. That's when I get paid so that's when you get paid. Deal with it.
Those of us who are very sick need more help not less. The only organization capable of redistributing income on the level that's necessary is the Federal Government. Instead of raising the necessary money from the people who pretend to be "job creators," the big discussion is about making budget cuts to pay down debt. That just reminds me of my current pet peeve (other than the existence of the Republican party) and that is health insurance advertising. I want to scream every time I hear some smarmy announcer explain how his company is going to cut health care costs by making everyone more healthy. There was no healthy choice to prevent me from needing brain surgery and there was no realistic way to prevent me from getting diabetes once I was too sick to exercise. I have the genetic pre-disposition or so it seems.
If health care is a big cost to business and insurers keep offering incentives for "healthy choices," it won't be long before people start losing their jobs for getting sick. It happened to me once long ago while working for a temp agency but they had the easy out of simply ending my contract. Without naming names or companies, my job went to the relative of someone who was sleeping with the big boss. Diabetics lose their jobs on a regular basis as well now. Do sick people need more help or less?
There could be more help coming but this election is huge. Every four years, the Republicans find someone more like Darth Vader to nominate for President. This isn't about any percentage of the population: 99%, 1%, 47% or whatever number we're talking about for the day. This is about 100% of us. No one would truly benefit from a Mittens Presidency. More crony capitalism would damage the economy to the point where the Friends of Mittens can't even make money by moving jobs overseas. Our national security wouldn't benefit from building more battleships when some idiot with a rowboat and an outboard motor packed with explosives can damage them in port.
I'm so tired because people can't see their best interests when they are sitting right under their noses. I'm so tired because I have to struggle while an idiot US Senate candidate talks about balanced budget amendments and not paying Congress when the budget isn't passed. Gee. I guess that means only millionaires can afford to serve in Congress now because Tea Party idiots will never allow a budget to pass on time. A rising tide lifts all boats so why are you trying to sink the country?
Friday, October 19, 2012
Happy Birthday to Me!
Happy Birthday to me! Happy Birthday to me! Glucklich Geburtstag auch. (That's Happy Birthday in German or would be if I had a keyboard with the proper symbols.) I'm 38 years old today and I was actually born pretty close to when I sat down to write this. It was sometime in the 5 AM hour.
Why am I in such a good mood? Well, it's my birthday and I've been promised beer and cake but not at the same time. Normally, I'd enjoy the beer but hold on to a sour mood because of some perceived failure in my life. Yesterday, I had an epiphany about the whole thing. Pierre Robert was doing his Workforce Blocks on WMMR and this can be a little depressing for me. These are blocks (three or more) of songs requested by and dedicated to people in the workforce. I haven't been in the workforce since I was disabled.
Well, an unemployed gentleman requested a block from Pierre and justified it by saying it's hard looking for a job. Pierre can be an elequent gentleman and he gave a little speech about how being unemployed can be a tough job. It's not just the task of looking for a job but all the other little stressors that add up. (That's me summing up Pierre, of course. If you've met him or listened to him you'd know why I have no chance of quoting him successfully.)
It took me a minute but I realized something. Managing this disability is my full-time job. I don't get to leave this job at the end of the day and I don't get days off from it. It's 24/7/365 if you follow that. I get help from others but it is all my job at the end of the day. Those of you who suffer from chronic pain know how it is.
Here's the hard part. Every chance you get, you need to raise a glass (literally or metaphorically) and celebrate the fact that you're still alive. Ups and downs aside, you've done your job and lived another year. It's not just chronic pain either. I lived through bullying and all sorts of abuse but I came through it with the help of a few good people. I had a diagnosed major depression and I lived through that. At 25, I was a newlywed diagnosed with Chiari. Some of you have an idea of what I've been through since then. I've made it to 38 now!
If you think I'm tooting my horn too much, I don't really care but you should remember that personal morale is part of my job. I've been worrying about trying to do so much more than manage my disability and that's foolish. Disability management is too difficult to add other stresses to it. Paying my bills is a good thing and so is writing. Paying my bills lets me enjoy such comforts as light and running water. Writing is something I do first and foremost for me. I want to be that next bestselling author who remains famous for a century or longer but that's not why I do it. It's just what I do.
I'm 38 now and I'm still alive. That gives me more time to make my mark on the world. There's a non-writing project I'd like to attempt and I call it the "Make A (Little) Wish Foundation." I'd like to make it so that survivors of severe trauma could experience something like what the "Make A Wish Foundation" does for kids. We have soldiers returning home without limbs. Maybe they need some new clothes with some special tailoring. I contacted a men's clothing store about that idea and it went nowhere. That's no reason to stop. It's a reason to try again and possibly go bigger. These same people who suffer from traumatic injuries might need help paying for that wheelchair van their families might have to buy. Better yet, there are modifications that can be made to existing cars to allow one to drive without the use of legs. I know that from my time in the spina bifida community. What about stair lifts and sit down showers? The list is endless because disability is so complex.
I've been handicapped and then disabled my whole life. I've managed my own disabilities for most of that time now. This is something to celebrate. I'd like to spend a week or more drinking good beer with old friends and Melissa who counts as both an old friend and the love of my life. That won't happen but today is to remind me to keep the celebration going at least in my heart. Every day is an accomplishment and a step forward.
Thank you to all of you who have sent me birthday greetings. It's much appreciated. Woohoo! Let me cheer you on for all those complexities in your lives. Please feel free to toot your own horns. I don't know your lives well enough. I just know that mine is a special sort of difficult and I've made it another year. 38!
Why am I in such a good mood? Well, it's my birthday and I've been promised beer and cake but not at the same time. Normally, I'd enjoy the beer but hold on to a sour mood because of some perceived failure in my life. Yesterday, I had an epiphany about the whole thing. Pierre Robert was doing his Workforce Blocks on WMMR and this can be a little depressing for me. These are blocks (three or more) of songs requested by and dedicated to people in the workforce. I haven't been in the workforce since I was disabled.
Well, an unemployed gentleman requested a block from Pierre and justified it by saying it's hard looking for a job. Pierre can be an elequent gentleman and he gave a little speech about how being unemployed can be a tough job. It's not just the task of looking for a job but all the other little stressors that add up. (That's me summing up Pierre, of course. If you've met him or listened to him you'd know why I have no chance of quoting him successfully.)
It took me a minute but I realized something. Managing this disability is my full-time job. I don't get to leave this job at the end of the day and I don't get days off from it. It's 24/7/365 if you follow that. I get help from others but it is all my job at the end of the day. Those of you who suffer from chronic pain know how it is.
Here's the hard part. Every chance you get, you need to raise a glass (literally or metaphorically) and celebrate the fact that you're still alive. Ups and downs aside, you've done your job and lived another year. It's not just chronic pain either. I lived through bullying and all sorts of abuse but I came through it with the help of a few good people. I had a diagnosed major depression and I lived through that. At 25, I was a newlywed diagnosed with Chiari. Some of you have an idea of what I've been through since then. I've made it to 38 now!
If you think I'm tooting my horn too much, I don't really care but you should remember that personal morale is part of my job. I've been worrying about trying to do so much more than manage my disability and that's foolish. Disability management is too difficult to add other stresses to it. Paying my bills is a good thing and so is writing. Paying my bills lets me enjoy such comforts as light and running water. Writing is something I do first and foremost for me. I want to be that next bestselling author who remains famous for a century or longer but that's not why I do it. It's just what I do.
I'm 38 now and I'm still alive. That gives me more time to make my mark on the world. There's a non-writing project I'd like to attempt and I call it the "Make A (Little) Wish Foundation." I'd like to make it so that survivors of severe trauma could experience something like what the "Make A Wish Foundation" does for kids. We have soldiers returning home without limbs. Maybe they need some new clothes with some special tailoring. I contacted a men's clothing store about that idea and it went nowhere. That's no reason to stop. It's a reason to try again and possibly go bigger. These same people who suffer from traumatic injuries might need help paying for that wheelchair van their families might have to buy. Better yet, there are modifications that can be made to existing cars to allow one to drive without the use of legs. I know that from my time in the spina bifida community. What about stair lifts and sit down showers? The list is endless because disability is so complex.
I've been handicapped and then disabled my whole life. I've managed my own disabilities for most of that time now. This is something to celebrate. I'd like to spend a week or more drinking good beer with old friends and Melissa who counts as both an old friend and the love of my life. That won't happen but today is to remind me to keep the celebration going at least in my heart. Every day is an accomplishment and a step forward.
Thank you to all of you who have sent me birthday greetings. It's much appreciated. Woohoo! Let me cheer you on for all those complexities in your lives. Please feel free to toot your own horns. I don't know your lives well enough. I just know that mine is a special sort of difficult and I've made it another year. 38!
Sunday, October 7, 2012
Still Alive (sorta)
Last Monday was my makeup appointment at the pain doc's office for the postponement at the end of September. I should have been happy that I only had to wait an hour past my appointment time to see the doctor. Unfortunately, that was an hour in the main waiting room where CNN was blasting on both TVs. I'm a diehard liberal Democrat but the news failed to catch my attention. For one thing, I heard about the reports they were explaining over and over again at least a week before. The TV wasn't just boring but was genuinely painful.
I'd been worried that I had a worsening problem with sensory overload because the problem has come up recently. Melissa did assure me that the TVs were, in fact, loud. It was like having a bad teacher repeat herself (the anchor at the time was a woman) over and over at top volume. For a brief time, the coverage was so bad that I stopped caring about the election but that was a very brief time.
The next phase of the appointment was a pleasant surprise. A nurse with whom I have had a mostly terrible relationship was nice to me. She asked about taking my vitals and I said no. Instead of arguing, she did what I asked despite the fact that the head doc wants vitals taken. I'm sure he'd be willing to give me a break but I haven't spoken with him yet. My nemesis was polite almost to the point of warmth and explained the reasons for the delay. I know that sounds terrible but I believe in giving credit for people who take steps in the right direction. She took big steps that way. Normally, I don't like being told something I already know like the fact that the day of postponed appointments from the week beforte had to be made up but I appreciated it this time. It let me know that nothing else was going wrong.
My doctor was her usual cooperative self including her explanations for things she couldn't do for me. I like that sort of thing. When I ask someone for something, no has to be an acceptable answer. Otherwise I'm a tyrant and an awfully pathetic one at that. The rest of the appointment was as painless as these things can be. It didn't take long to get home once things got started.
Unfortunately, I was already in a state of terrible agitation with twitching all over. I did what I could about it which was sleep a lot on Monday and Tuesday. By Wednesday, I had what I thought were symptoms I get when I sleep too long all at once. I get congested in all sorts of nasty and unpleasant ways. Worse, I had the cold sweats. It felt as if I hadn't showered in days and all that sweat left me with damp chills. The good news is that there's an easy remedy for feeling dirty. I forced myself to overcome the odd exhaustion that still plagued me and got my shower.
When I got out of the shower, I couldn't dry off because I was sweating so badly. When Melissa fixed dinner, I felt much better. Yay, wifey! On Thursday, I had a terrible sore throat but that was treatable as well. Friday brought false hope. I improved a lot on Friday which is understandable for payday. That just happened to be the night when Melissa had to stay up with me holding my hand because I was miserable. We're talking miserable enough to borrow trouble. If Melissa hadn't been here, I might have given in and found some minor self destructive behavior in which to indulge. She stayed with me and was wonderful.
I woke up on Saturday feeling like an elephant or a certain cat named Meekers was sitting on my chest. I didn't think I could get out of bed but I did. After some medicine and some time in the bathroom, I felt able to breathe. (If you don't understand the bathroom part, try having a coughing or sneezing fit while incontinent.) There was no game plan for the way I felt. Most people would stay in bed but I felt that's what caused the congestion to become so severe so fast.
I tried alternating two strategies. For starters, I stayed upright until I was too exhausted to sit comfortably. That sent me back to bed for six hour stretches. Individual stretches might have been shorter but none were longer. I didn't want to fill up again. Melissa and I spent the time like any self respecting invalids lacking TV reception would. We watched "MASH" on DVD. It's probably my all-time favorite show anyway but, when the alternatives are watch more or stand up, I watched more. I think we've watched ten hours or more in the last 24 real life hours.
As night approached, I started to worsen fairly drastically but I remembered that there's a fever reducer in my narcotic pain meds. I doubt that I ever had a fever but I improved and read a little more about armored vehicles. That's when I came upstairs to play more "Diablo II" and try to avoid the frustration of trying to sleep when our bodies are programmed to feel the worst for the day. So far, so good. I haven't felt the despair of poorly timed insomnia and I should be good and tired when Melissa leaves for the day.
It would be nice to have a good Sunday. I can't watch football but I can hope for pleasant dreams.
I'd been worried that I had a worsening problem with sensory overload because the problem has come up recently. Melissa did assure me that the TVs were, in fact, loud. It was like having a bad teacher repeat herself (the anchor at the time was a woman) over and over at top volume. For a brief time, the coverage was so bad that I stopped caring about the election but that was a very brief time.
The next phase of the appointment was a pleasant surprise. A nurse with whom I have had a mostly terrible relationship was nice to me. She asked about taking my vitals and I said no. Instead of arguing, she did what I asked despite the fact that the head doc wants vitals taken. I'm sure he'd be willing to give me a break but I haven't spoken with him yet. My nemesis was polite almost to the point of warmth and explained the reasons for the delay. I know that sounds terrible but I believe in giving credit for people who take steps in the right direction. She took big steps that way. Normally, I don't like being told something I already know like the fact that the day of postponed appointments from the week beforte had to be made up but I appreciated it this time. It let me know that nothing else was going wrong.
My doctor was her usual cooperative self including her explanations for things she couldn't do for me. I like that sort of thing. When I ask someone for something, no has to be an acceptable answer. Otherwise I'm a tyrant and an awfully pathetic one at that. The rest of the appointment was as painless as these things can be. It didn't take long to get home once things got started.
Unfortunately, I was already in a state of terrible agitation with twitching all over. I did what I could about it which was sleep a lot on Monday and Tuesday. By Wednesday, I had what I thought were symptoms I get when I sleep too long all at once. I get congested in all sorts of nasty and unpleasant ways. Worse, I had the cold sweats. It felt as if I hadn't showered in days and all that sweat left me with damp chills. The good news is that there's an easy remedy for feeling dirty. I forced myself to overcome the odd exhaustion that still plagued me and got my shower.
When I got out of the shower, I couldn't dry off because I was sweating so badly. When Melissa fixed dinner, I felt much better. Yay, wifey! On Thursday, I had a terrible sore throat but that was treatable as well. Friday brought false hope. I improved a lot on Friday which is understandable for payday. That just happened to be the night when Melissa had to stay up with me holding my hand because I was miserable. We're talking miserable enough to borrow trouble. If Melissa hadn't been here, I might have given in and found some minor self destructive behavior in which to indulge. She stayed with me and was wonderful.
I woke up on Saturday feeling like an elephant or a certain cat named Meekers was sitting on my chest. I didn't think I could get out of bed but I did. After some medicine and some time in the bathroom, I felt able to breathe. (If you don't understand the bathroom part, try having a coughing or sneezing fit while incontinent.) There was no game plan for the way I felt. Most people would stay in bed but I felt that's what caused the congestion to become so severe so fast.
I tried alternating two strategies. For starters, I stayed upright until I was too exhausted to sit comfortably. That sent me back to bed for six hour stretches. Individual stretches might have been shorter but none were longer. I didn't want to fill up again. Melissa and I spent the time like any self respecting invalids lacking TV reception would. We watched "MASH" on DVD. It's probably my all-time favorite show anyway but, when the alternatives are watch more or stand up, I watched more. I think we've watched ten hours or more in the last 24 real life hours.
As night approached, I started to worsen fairly drastically but I remembered that there's a fever reducer in my narcotic pain meds. I doubt that I ever had a fever but I improved and read a little more about armored vehicles. That's when I came upstairs to play more "Diablo II" and try to avoid the frustration of trying to sleep when our bodies are programmed to feel the worst for the day. So far, so good. I haven't felt the despair of poorly timed insomnia and I should be good and tired when Melissa leaves for the day.
It would be nice to have a good Sunday. I can't watch football but I can hope for pleasant dreams.
Subscribe to:
Posts (Atom)