*sapphoq healing tbi
Monday, December 28, 2009
Absence and Sorrow
I've been somewhat absent from my blogs (and from as much of life as I can cancel) for several reasons. My dad has dementia and that has involved my own grief as well as his acute sense that his "mind is failing." Dad who is still driving a car (no thanks to the State of New Jersey for giving him back his license even after I informed them of his deteriorating condition) has been up to see us several times over the past few months.
Additionally the iron-deficient anemia (which I thought I had only had since August but the blood doc tells me I've had for three years) remained unmedicated for a month thanks to the shenanigans of the mail-order pharmacy in cahoots with my medical insurance plan. I could not tolerate over the counter iron. The medical insurance plan required a pre-authorization for the iron script. The mail-order company sent me back the script 28 days after they had received it. Insurance company refused to pay. Pre-auth was turned down I guess but I had not been informed directly by the insurance company. Price of prescription that was turned down: 39.99 for a thirty day supply. I need the iron pills and specifically I need the prescription iron due to things like a severe hiatal hernia and an irritated colon. So I shelled out the two twenties and practiced being glad that I had the money.
Meanwhile though, I suffered through several months of extreme heat sickness and tiredness. The t.b.i. gave me cognitive fatigue and some physical fatigue as well. The C-PAP machine stopped the feeling that I was sleep-walking through life, even though t.b.i. fatigue remains. The anemia finished me off for awhile. I am actually looking forward to visiting the gut doc in January. I feel so un-well that I am looking forward to the kind of testing that comes with visiting the gut doc.
Sometimes I think medical insurance companies run the numbers like a bettor would run the horse races. As long as the horse is winning (doesn't access the medical insurance benefits much) everything is gravy. When the horse begins stumbling a bit (needs medical attention for chronic conditions) the bettor begins to doubt his choices. When the stumbling horse falls down deal-- there is no longer any problem. Business is business. I understand that. But I also understand that human beings are not race horses and that somehow our lives should matter. My insurance company insisting that I should be able to tolerate taking over-the-counter iron for an anemia which I've had for three years flies in the face of a certain reality. So the company gets to save on my iron medicine by refusing to pay for it. A certain amount of denial on their part saves them money. But that same denial forces me, an adult on disability through no fault of my own, to spend extra money on a medical necessity. Thanks pal.
There is some inherent wrongness with insisting that a patient be able to take iron over the counter in spite of conditions that are counter-indicative to that. There is some inherent wrongness with the A.A.R.P. lobbying against any state motor vehicle agency requiring adults of a certain age to submit to driving retesting. And along with that consequently, many insurance companies failing to pay for driver evaluations conducted by a professional upon order of a physician. My dad's insurance-- a combination of Medicare and A.A.R.P. supplemental Medicare-- naturally refused to pay a dime toward his eval (one that he utterly failed I will add). That bill amounted to around 400 bucks.
So to say that I am a bit testy, irritable, and sluggish is accurate but doesn't really cover the whole truth. I've had all I can do to continue to be a participant in life rather than an observer on the sidelines. I am filled with grief. Dad knows he has dementia and he is aware that his brain is on strike. He continues to steadfastly refuse medications for all of his medical conditions as well as the brain scans that would make a definitive diagnosis possible. We do not even have a name for the monster that is beating on his brain. I love my dad and when he dies, I will miss him for the rest of my life. I hope he dies in his sleep peacefully before the real misery sets in. I feel like there should be more or better things to hope for but I haven't found those things yet.
sapphoq healing t.b.i.
I've been somewhat absent from my blogs (and from as much of life as I can cancel) for several reasons. My dad has dementia and that has involved my own grief as well as his acute sense that his "mind is failing." Dad who is still driving a car (no thanks to the State of New Jersey for giving him back his license even after I informed them of his deteriorating condition) has been up to see us several times over the past few months.
Additionally the iron-deficient anemia (which I thought I had only had since August but the blood doc tells me I've had for three years) remained unmedicated for a month thanks to the shenanigans of the mail-order pharmacy in cahoots with my medical insurance plan. I could not tolerate over the counter iron. The medical insurance plan required a pre-authorization for the iron script. The mail-order company sent me back the script 28 days after they had received it. Insurance company refused to pay. Pre-auth was turned down I guess but I had not been informed directly by the insurance company. Price of prescription that was turned down: 39.99 for a thirty day supply. I need the iron pills and specifically I need the prescription iron due to things like a severe hiatal hernia and an irritated colon. So I shelled out the two twenties and practiced being glad that I had the money.
Meanwhile though, I suffered through several months of extreme heat sickness and tiredness. The t.b.i. gave me cognitive fatigue and some physical fatigue as well. The C-PAP machine stopped the feeling that I was sleep-walking through life, even though t.b.i. fatigue remains. The anemia finished me off for awhile. I am actually looking forward to visiting the gut doc in January. I feel so un-well that I am looking forward to the kind of testing that comes with visiting the gut doc.
Sometimes I think medical insurance companies run the numbers like a bettor would run the horse races. As long as the horse is winning (doesn't access the medical insurance benefits much) everything is gravy. When the horse begins stumbling a bit (needs medical attention for chronic conditions) the bettor begins to doubt his choices. When the stumbling horse falls down deal-- there is no longer any problem. Business is business. I understand that. But I also understand that human beings are not race horses and that somehow our lives should matter. My insurance company insisting that I should be able to tolerate taking over-the-counter iron for an anemia which I've had for three years flies in the face of a certain reality. So the company gets to save on my iron medicine by refusing to pay for it. A certain amount of denial on their part saves them money. But that same denial forces me, an adult on disability through no fault of my own, to spend extra money on a medical necessity. Thanks pal.
There is some inherent wrongness with insisting that a patient be able to take iron over the counter in spite of conditions that are counter-indicative to that. There is some inherent wrongness with the A.A.R.P. lobbying against any state motor vehicle agency requiring adults of a certain age to submit to driving retesting. And along with that consequently, many insurance companies failing to pay for driver evaluations conducted by a professional upon order of a physician. My dad's insurance-- a combination of Medicare and A.A.R.P. supplemental Medicare-- naturally refused to pay a dime toward his eval (one that he utterly failed I will add). That bill amounted to around 400 bucks.
So to say that I am a bit testy, irritable, and sluggish is accurate but doesn't really cover the whole truth. I've had all I can do to continue to be a participant in life rather than an observer on the sidelines. I am filled with grief. Dad knows he has dementia and he is aware that his brain is on strike. He continues to steadfastly refuse medications for all of his medical conditions as well as the brain scans that would make a definitive diagnosis possible. We do not even have a name for the monster that is beating on his brain. I love my dad and when he dies, I will miss him for the rest of my life. I hope he dies in his sleep peacefully before the real misery sets in. I feel like there should be more or better things to hope for but I haven't found those things yet.
sapphoq healing t.b.i.
Labels: brain+damage, death, dementia, h.m.o.s, loss, parent
¶ 7:09 PM 0 comments links to this post
Saturday, November 14, 2009
On Politics and Swear Words
After reading Steve Michael's three latest rants and Jeremy Crow's Volume 24 over at the Itching for a Coffee blog, I found that I could not resist adding my own thoughts such as they are. In googling the words "a$$ fu3k," I found that there is indeed an internet cafe by that name which in fact does not have to do with political acts. The suggestion that parents can send their college-age kids to D.C. if they "want to be a$$ fu3ks" struck me as hysterical.
I prefer the word asswipe which is more versatile. It has 41 definitions in the Urban Dictionary. Some of those definitions actually reference the political. A Google search also yields a couple of vids, a site that has funny pictures and games on it, a forum insulting owners of a car, and references to a bad contractor in Toronto.
I myself have no inherent love for politicians as a whole nor of crooked ones specifically. Those of us who have gone to college or sought higher edumacation have to exert some effort if we are to aspire to greatness or even to employment. My dad instilled in me a hefty dose of Protestant work ethic. (In my own patchwork of careers I have certainly suffered from a lack of willingness many times to put to use the values he taught me about work but that is simply and utterly not his fault). As I matured I learned the truth of the saying attributed to Albert Einstein: "Insanity: doing the same thing over and over again and expecting different results." I shortened this axiom to "If I want something different, I have to do something different."
When I found that the journey to excellence, achievement, and promotions in my chosen field involved perseverance and hard work, I had to engage in battling my native laziness and inertia if I wanted to get anywhere. After my motor vehicle accident about six years ago and traumatic brain injury which profoundly altered the course of my life, once again I had to really apply myself in order to learn how to compensate for my neurological difficulties. Whining about how my bosses had better connections didn't help me get promotions. Remaining embittered about my current state of affairs hindered me from being able to make any lasting changes to my life and circumstance. And so, my dad's hard-driving work ethic continues to inform me about what it takes for me to achieve my goals even today when the cognitive fatigue prevents me from being able to work. I can sit and whine about how "everyone else" has it better, has it going on, was able to access the services that I cannot access. Or I can continue to strive to be the best spike I can be and never mind who has it better, has it going on, was able to get more help, or never got disabled in the first place.
The concerns that both of my co-team members over at Itching have expressed in regard to the R-word being hurled at anyone who dares criticizes the President I believe are justified. That anyone should have to qualify any criticism of the person or policies or actions of Obama with, "Hey I am not a racist. I have friends who are black. I don't hate blacks..." informs me that this pressure-- this willingness of some segments of society to judge others as being racist because of political views-- is very much a real presence. And yeah, that some of the world's worst are embracing Obama and congratulating him is downright scary.
I have a traumatic brain injury. I curse fluently. I always have cursed fluently. The thing is, that since my injury, I am more likely to curse openly and publicly at times and places where others would rather I did not. With some difficulty, I am able to hold back on the cursing somewhat so that my message is not lost in the flood of colorful language. I may not agree that cursing or appearance should "matter" to those who are listening to me, reading my stuff, trying to help me with my vocational or medical problems. The reality is that it does matter to the more genteel folks around me. And so I endeavor to inhibit my dis-inhibitions for the sake of getting my voice heard.
In this day and age of renewed interest in "protecting the children" it is almost risky to curse in a blog. As some of us learned on Yahoo 360 (may that stinking corpse rot forever), censorship is not something that is applied equally in all circumstances. Criticizing the corporation became inherently more dangerous than putting a picture of a penis on one's profile was. Crow got kicked from 360. Unfortunately my writing was not talented enough to enjoy that distinction. Perhaps someday. Meanwhile, there is Blogspot. The folks at Google don't seem to be as hung up about these things. Yet, I ask myself how many curse words and which ones will get the blog Itching for a Coffee put on restricted status. I don't want that blog to be forced into "by invitation only" because quite frankly we don't have enough readers to remain a viable outreach if that were to happen. So then do I censor my buddy Steven by asking him to "tone it down" or at the very least "not to say the c-word and to limit the cursing" to some arbitrary number per paragraph? Do I dash a panicked e-mail off to Crow asking him for his input? Or do I just allow the chips to fall where they may? Or something else entirely?
Up through my twenties, I did not engage in a whole lot of intercourse because quite frankly I figured that if I got pregnant before marriage my father would "kill" me. I will point out here that I was mostly self-supporting in my twenties and living away from home. Yes, computers and the internet are all over the place. True no one can watch their under-aged kids "all the time." These two realities do not divorce from parents their responsibility to monitor the activities of their children. Parents, tend to your children. It is a dangerous world. Folks curse on blogs. Predators lay waiting in chat rooms. Kids can be exposed to ideas and values different from your own. My dad never told me "Don't get pregnant before you are married or else." Because his values were conveyed to me, my actions reflected those values even when he wasn't watching. Surely you parents of today are able to deliver clear messages about what is acceptable behavior in your offspring to your offspring. And just maybe, if you do so, your kids as adults won't choose to be asswipes living in D.C. or elsewhere whining about how they got left out of the lucky lottery-- or worse-- running for public office.
sapphoq healing t.b.i.
I prefer the word asswipe which is more versatile. It has 41 definitions in the Urban Dictionary. Some of those definitions actually reference the political. A Google search also yields a couple of vids, a site that has funny pictures and games on it, a forum insulting owners of a car, and references to a bad contractor in Toronto.
I myself have no inherent love for politicians as a whole nor of crooked ones specifically. Those of us who have gone to college or sought higher edumacation have to exert some effort if we are to aspire to greatness or even to employment. My dad instilled in me a hefty dose of Protestant work ethic. (In my own patchwork of careers I have certainly suffered from a lack of willingness many times to put to use the values he taught me about work but that is simply and utterly not his fault). As I matured I learned the truth of the saying attributed to Albert Einstein: "Insanity: doing the same thing over and over again and expecting different results." I shortened this axiom to "If I want something different, I have to do something different."
When I found that the journey to excellence, achievement, and promotions in my chosen field involved perseverance and hard work, I had to engage in battling my native laziness and inertia if I wanted to get anywhere. After my motor vehicle accident about six years ago and traumatic brain injury which profoundly altered the course of my life, once again I had to really apply myself in order to learn how to compensate for my neurological difficulties. Whining about how my bosses had better connections didn't help me get promotions. Remaining embittered about my current state of affairs hindered me from being able to make any lasting changes to my life and circumstance. And so, my dad's hard-driving work ethic continues to inform me about what it takes for me to achieve my goals even today when the cognitive fatigue prevents me from being able to work. I can sit and whine about how "everyone else" has it better, has it going on, was able to access the services that I cannot access. Or I can continue to strive to be the best spike I can be and never mind who has it better, has it going on, was able to get more help, or never got disabled in the first place.
The concerns that both of my co-team members over at Itching have expressed in regard to the R-word being hurled at anyone who dares criticizes the President I believe are justified. That anyone should have to qualify any criticism of the person or policies or actions of Obama with, "Hey I am not a racist. I have friends who are black. I don't hate blacks..." informs me that this pressure-- this willingness of some segments of society to judge others as being racist because of political views-- is very much a real presence. And yeah, that some of the world's worst are embracing Obama and congratulating him is downright scary.
I have a traumatic brain injury. I curse fluently. I always have cursed fluently. The thing is, that since my injury, I am more likely to curse openly and publicly at times and places where others would rather I did not. With some difficulty, I am able to hold back on the cursing somewhat so that my message is not lost in the flood of colorful language. I may not agree that cursing or appearance should "matter" to those who are listening to me, reading my stuff, trying to help me with my vocational or medical problems. The reality is that it does matter to the more genteel folks around me. And so I endeavor to inhibit my dis-inhibitions for the sake of getting my voice heard.
In this day and age of renewed interest in "protecting the children" it is almost risky to curse in a blog. As some of us learned on Yahoo 360 (may that stinking corpse rot forever), censorship is not something that is applied equally in all circumstances. Criticizing the corporation became inherently more dangerous than putting a picture of a penis on one's profile was. Crow got kicked from 360. Unfortunately my writing was not talented enough to enjoy that distinction. Perhaps someday. Meanwhile, there is Blogspot. The folks at Google don't seem to be as hung up about these things. Yet, I ask myself how many curse words and which ones will get the blog Itching for a Coffee put on restricted status. I don't want that blog to be forced into "by invitation only" because quite frankly we don't have enough readers to remain a viable outreach if that were to happen. So then do I censor my buddy Steven by asking him to "tone it down" or at the very least "not to say the c-word and to limit the cursing" to some arbitrary number per paragraph? Do I dash a panicked e-mail off to Crow asking him for his input? Or do I just allow the chips to fall where they may? Or something else entirely?
Up through my twenties, I did not engage in a whole lot of intercourse because quite frankly I figured that if I got pregnant before marriage my father would "kill" me. I will point out here that I was mostly self-supporting in my twenties and living away from home. Yes, computers and the internet are all over the place. True no one can watch their under-aged kids "all the time." These two realities do not divorce from parents their responsibility to monitor the activities of their children. Parents, tend to your children. It is a dangerous world. Folks curse on blogs. Predators lay waiting in chat rooms. Kids can be exposed to ideas and values different from your own. My dad never told me "Don't get pregnant before you are married or else." Because his values were conveyed to me, my actions reflected those values even when he wasn't watching. Surely you parents of today are able to deliver clear messages about what is acceptable behavior in your offspring to your offspring. And just maybe, if you do so, your kids as adults won't choose to be asswipes living in D.C. or elsewhere whining about how they got left out of the lucky lottery-- or worse-- running for public office.
sapphoq healing t.b.i.
Labels: censorship, Obama, politics, t.b.i., tbi, traumatic+brain+injury
¶ 8:17 PM 0 comments links to this post
Tuesday, October 20, 2009
ReCreation for folks with t.b.i.
A big shout-out to Sun Valley Adaptive Sports http://www.svasp.org/ of Idaho for providing children, teens, and adults with various disabilities opportunities to learn and participate in activities like rock-climbing, fly-fishing, acting, hiking, rafting, and bowling.
S.V.A.S. also serves people returning from the war with traumatic brain injuries. Participants who may be veterans or on active duty (primarily living in Idaho) are offered week-long camps. The camps are free, and for wounded warriors also free to their spouses. The Associated Press article
http://www.google.com/hostednews/ap/article/ALeqM5jLqA0GapHCQTjMuLRWk_-l1qZGJAD9BDKJD00 titled "Veterans Find Healing on the Water," by Jesse L. Bonner talks a bit about a recent fly fishing camp as well as about one vet who has been gifted with paid singing lessons upon his return home. The article left me wistfully wishing for such an organization here.
On my own wish list of things to do before I die are: para-sailing, hang-gliding, jumping out of an airplane with a parachute, and sleeping on the side of a cliff in one of those cool looking cocoon sleeping bags. I want to do each of those things at least once. (I have nixed bungee jumping on the grounds that I don't find the idea of dangling upside down appealing).
After my injury, I found that some friends were unable to hang with my personality changes, self-centeredness that often accompanies t.b.i., and intensity. Some friends backed away for awhile, some left permanently. A few stuck around through the worst of my recovery. I felt isolated because I was no longer able to work and thus lacked the socialization inherent in the workplace. I was in physical pain and mentally depressed. I was excluded from rehab and day program participation due to personal circumstance-- the insurance companies were fighting over who would pay the bills. I was also tired as h3ll most of the time. I socialized in the needle-sticking neurodoc's waiting room with others who were also in physical pain, at the pool where I was able to get some physical therapy (thanks to Ike Boka, a dedicated anesthesiologist in private practice), and in the rooms of recovery (from active addiction). Via the internet, I met others who also have traumatic brain injuries and I re-learned how to write in understandable sentences. There were the many nights in the brain injury chat room http://www.braininjurychat.org/ spent with others trying to remember the names of the seven dwarfs. And there was the dog. I wasn't able to walk her at first and hired folks to do so. When I did resume our daily walks, she too became part of reconnecting with others.
The internet became central to my rehab (along with vision therapy-- a shout-out to Dr. Fox and Judy). The folks in the brain injury chat room informed that I would have to be in charge of my own cognitive rehab. I found sites that offered games and other things to help my injured brain. I found people on the internet. As I progressed, I began to acquire some blogs for writing in. Through blogging, I met my good friend Jeremy Crow who got me involved in creating backgrounds for e-stationary. I also discovered places where I learned how to write goals. I slowly began to dream again. And I realized a dream of traveling cross country alone.
Today I am still walking the dog. And yes, I still like swimming in cold water in the woods, birding, and traveling about. (My tastes in reading have changed. Pre-trauma I read mostly fiction. Post-trauma I read mostly computer-related books). Aside from the t.b.i. support groups in Albany run by Peter Kahrmann and continued participation in rooms of recovery, I am also engaged in various writing pursuits. And I found the virtual world of Second Life where I practice 3D building in an effort to combat my visual perception problems. I crochet cotton washcloths and occasionally create an original pattern in needlepoint. I don't object to spending time alone. I am comfortable with my own company. I also like spending kick-back time with others who have dogs, are interested in crocheting or needlepoint or drinking coffee, or who also enjoy traveling.
I do feel the lack of a work-related role in my life. Some days I miss being able to work. I am slowly accepting my loss of a career-- acceptance is not the same thing as approval-- and tackling the organization and care of our home. I plan to stay happily married. I hope to be able to publish the novel I am writing someday (and actually get paid for it); to travel throughout the world via trains, planes, and cruise ships; to meet Jimmy Buffett.
sapphoq healing t.b.i.
S.V.A.S. also serves people returning from the war with traumatic brain injuries. Participants who may be veterans or on active duty (primarily living in Idaho) are offered week-long camps. The camps are free, and for wounded warriors also free to their spouses. The Associated Press article
http://www.google.com/hostednews/ap/article/ALeqM5jLqA0GapHCQTjMuLRWk_-l1qZGJAD9BDKJD00 titled "Veterans Find Healing on the Water," by Jesse L. Bonner talks a bit about a recent fly fishing camp as well as about one vet who has been gifted with paid singing lessons upon his return home. The article left me wistfully wishing for such an organization here.
On my own wish list of things to do before I die are: para-sailing, hang-gliding, jumping out of an airplane with a parachute, and sleeping on the side of a cliff in one of those cool looking cocoon sleeping bags. I want to do each of those things at least once. (I have nixed bungee jumping on the grounds that I don't find the idea of dangling upside down appealing).
After my injury, I found that some friends were unable to hang with my personality changes, self-centeredness that often accompanies t.b.i., and intensity. Some friends backed away for awhile, some left permanently. A few stuck around through the worst of my recovery. I felt isolated because I was no longer able to work and thus lacked the socialization inherent in the workplace. I was in physical pain and mentally depressed. I was excluded from rehab and day program participation due to personal circumstance-- the insurance companies were fighting over who would pay the bills. I was also tired as h3ll most of the time. I socialized in the needle-sticking neurodoc's waiting room with others who were also in physical pain, at the pool where I was able to get some physical therapy (thanks to Ike Boka, a dedicated anesthesiologist in private practice), and in the rooms of recovery (from active addiction). Via the internet, I met others who also have traumatic brain injuries and I re-learned how to write in understandable sentences. There were the many nights in the brain injury chat room http://www.braininjurychat.org/ spent with others trying to remember the names of the seven dwarfs. And there was the dog. I wasn't able to walk her at first and hired folks to do so. When I did resume our daily walks, she too became part of reconnecting with others.
The internet became central to my rehab (along with vision therapy-- a shout-out to Dr. Fox and Judy). The folks in the brain injury chat room informed that I would have to be in charge of my own cognitive rehab. I found sites that offered games and other things to help my injured brain. I found people on the internet. As I progressed, I began to acquire some blogs for writing in. Through blogging, I met my good friend Jeremy Crow who got me involved in creating backgrounds for e-stationary. I also discovered places where I learned how to write goals. I slowly began to dream again. And I realized a dream of traveling cross country alone.
Today I am still walking the dog. And yes, I still like swimming in cold water in the woods, birding, and traveling about. (My tastes in reading have changed. Pre-trauma I read mostly fiction. Post-trauma I read mostly computer-related books). Aside from the t.b.i. support groups in Albany run by Peter Kahrmann and continued participation in rooms of recovery, I am also engaged in various writing pursuits. And I found the virtual world of Second Life where I practice 3D building in an effort to combat my visual perception problems. I crochet cotton washcloths and occasionally create an original pattern in needlepoint. I don't object to spending time alone. I am comfortable with my own company. I also like spending kick-back time with others who have dogs, are interested in crocheting or needlepoint or drinking coffee, or who also enjoy traveling.
I do feel the lack of a work-related role in my life. Some days I miss being able to work. I am slowly accepting my loss of a career-- acceptance is not the same thing as approval-- and tackling the organization and care of our home. I plan to stay happily married. I hope to be able to publish the novel I am writing someday (and actually get paid for it); to travel throughout the world via trains, planes, and cruise ships; to meet Jimmy Buffett.
sapphoq healing t.b.i.
Labels: dreams, recreation, t.b.i., tbi, traumatic+brain+injury
¶ 4:23 PM 0 comments links to this post
