One of the recurrent themes in the Bible is of life created out of sterility or death. With my nephew's transplant operation coming up in just a few hours, it just brings to mind powerfully the way's that we as a society working with modern medicine have worked to be able to perform acts of love to bring life from what otherwise would be only death. That is so much more true in a situation like this- where a heart transplant is the kind of life that can only come tragically from another death. In this season of reflection in preparing for Easter and in this shadow of waiting to see if my nephew will have a new lease on life, a hymn about death and renewed life seems appropriate. Now the Green Blade Riseth is a favorite of mine.
In celebrating Easter I hope we can seek not just to celebrate the past, but to find ways to participate in the renewing of life and the world.
Showing posts with label Medical. Show all posts
Showing posts with label Medical. Show all posts
Thursday, March 26, 2015
Saturday, March 14, 2015
It never rains but it pours...
Earlier this year our family all came down with the flu. I was disappointed since I normally never get the flu and we all got the flu shots, but this year was just bad luck for the flu shots not working. Ever since we got the flu our youngest son has been acting strangely. At first we just assumed he had some post flu grumpiness or that he wasn't feeling all the way better yet. But the behaviors never went away. He became very clingy, wanting to be held by his mommy all the time. He wouldn't even let me pick him up for a while. He might ask me to pick him up, but the moment I tried to lift him he'd squirm away and go running for mommy as if he were frightened. His behaviour became ritualistic and very concerned with things being the "right way." He developed phobias of pooping in the bathtub (to the point where he didn't want to take baths) and of bees (to the point where he didn't want to go outside). Finally we called the pediatrician and had a basic evaluation appointment. The doctor thinks that either he has just had a regression event into autism or some kind of anxiety class disorder has just popped out of the blue on us. His speech abilities seem unaffected and we don't know whether his socializing abilities are affected yet because he won't go outside to play with other kids these days because of his new found fear of bees. Without knowing if his social behaviors have changed, the doctor isn't sure whether its an anxiety disorder like OCD or if he is autistic like his older brother. We have a family history for both classes of disorders, so either are possibilities at this point.
I'm not sure what to think or feel about the possibility that I might have passed on being on the autistic spectrum to both of my children. We always knew there was a possibility of this happening, but Taliesin had always seemed like the obvious one where that was playing out- missing communication milestones, ritualistic, shy, and very rule based from the beginning. Lionel was always the easy going communicative one who wasn't shy of anyone. It's painful to see the easy going nature suddenly disappear in favor of a very ritualistic and anxious one where Lionel painfully afraid of situations and things he used to enjoy very much. Hopefully we can remedy much of that with proper intervention.
The narrative that autism is a state of merely being different rather than broken is easier to accept when the traits simply grow organically in place as the way things have always been. Its easier to accept it that way. You can't imagine things having been different. But when things were different and become decidedly worse in very specific ways over a short period of time, you can imagine both ways. It hurts more. It doesn't make it any less part of the person that you love, but you feel a bigger need to fix it. Striking a balance between providing opportunities for many things in life to not be as hard for him and providing acceptance and a compelling narrative of self worth is difficult at best. We don't know what the future will hold, but at least we know to be looking to know what we can do to help. Life could be easier and I wish so many hard things didn't happen so close together. But that's life...
I'm not sure what to think or feel about the possibility that I might have passed on being on the autistic spectrum to both of my children. We always knew there was a possibility of this happening, but Taliesin had always seemed like the obvious one where that was playing out- missing communication milestones, ritualistic, shy, and very rule based from the beginning. Lionel was always the easy going communicative one who wasn't shy of anyone. It's painful to see the easy going nature suddenly disappear in favor of a very ritualistic and anxious one where Lionel painfully afraid of situations and things he used to enjoy very much. Hopefully we can remedy much of that with proper intervention.
The narrative that autism is a state of merely being different rather than broken is easier to accept when the traits simply grow organically in place as the way things have always been. Its easier to accept it that way. You can't imagine things having been different. But when things were different and become decidedly worse in very specific ways over a short period of time, you can imagine both ways. It hurts more. It doesn't make it any less part of the person that you love, but you feel a bigger need to fix it. Striking a balance between providing opportunities for many things in life to not be as hard for him and providing acceptance and a compelling narrative of self worth is difficult at best. We don't know what the future will hold, but at least we know to be looking to know what we can do to help. Life could be easier and I wish so many hard things didn't happen so close together. But that's life...
Tuesday, August 26, 2014
The Passing of Genetic Destiny?
Even as far back as when Bonnie Jean and I began serious dating, we talked about the possibility that our kids would be autistic. It was just part of the package that came with the idea of marrying an autistic man. I seem to remember Bonnie Jean saying that once she understood me better, she didn't think she'd have a problem with it.
When we got pregnant after a few years of trying, it wasn't too far from our minds. The medical intake forms for the OBGYN asked if there was any history of autism in the family, and I seem to remember joking that I wondered whether the doctor would be surprised if I told him that yes there was a history of autism in the family because I had Asperger Syndrome.
When Taliesin was born I don't remember how it came up but I took one of my blind leaps and somehow ended up disclosing my autism to one of the nurses at the hospital who was absolutely fascinated by me. Talking about my Asperger Syndrome diagnosis can be hard even with people that I trust will react well- even to the point that I've had times that the experience leaves me shaking. But sometimes I just dive in and let it flow. Fortunately it turned out well.
When Taliesin was late with his language development milestones or broke into sobs of tears because a stranger dared smile at him, autism wasn't far from our minds. He was so scared of strangers that we had to tell the people who took care of nursery at the church not to pick him up to calm him down when he was upset. He'd calm down faster if he wasn't also screaming about someone touching and looking at him. Fortunately they were willing to believe us and reported with some bewilderment that our judgement was right, he calmed down faster on the floor than being cuddled by a stranger.
Some family members have kind of started from the assumption that every one of these signals was a definite sign that our little boy was on the autistic spectrum. But we never saw enough to consider it a justified assumption. We've let our pediatricians know our family history and routinely discussed Taliesin's quirks with him. But until recently our pediatricians had never considered that enough symptoms were falling into place to be taken seriously. It always seemed a possibility that Taliesin might just inherit a few of my quirks without getting the whole package. During our last well visit though we explained the severe social anxiety, literal concrete thinking patterns, rigid routines, and ritualistic play patterns that our son was developing. And now we've got a referral to the University for an autism screening. While the result isn't certain, we're feeling more settled that they will make an autism spectrum disorder diagnosis.
I'm starting to see a lot of my own limitations in my son. As we were describing how Taliesin literally took months of acclimatization to be willing to talk to the newly moved in neighbor kids because he'd rather just stand there and smile shyly it made me think of myself as an adult at work. It takes me a long time of adjustment- weeks to months actually-to feel comfortable with a new social group and be ready to do anything much more than just sit there and read by myself. I'm just happy to have people around so that if I choose to take the effort to interact they'll be there for me. After a long time maybe I'll find a few people that I can figure out how to talk to on a more chit chat basis. When changes in seating arrangements force me to sit by new people on a regular basis I quickly become mostly silent and miserable.
Within the last few weeks my son has finally gotten over his initial shyness to try to talk to the new neighbor children. But somehow they are just feeling confused by his choices of conversation- such as what kinds of shoes they are wearing or whether there are ravens on the roof of the building and what noise they make. And yes- he knows what ravens look like, along with a number of other birds because his bird obsessed father has been teaching him. So the little girls he is trying to befriend just ignore him, perhaps just not knowing how to react- especially given his history of not being up to speaking to them. Just to example how firmly that expectation of his silence has formed, Bonnie Jean saw one of these little girls wanting to play with Taliesin's bike but being stopped by her mom who wanted the little girl to ask Taliesin first. The little girl burst into tears, crying that Taliesin wouldn't answer. Fortunately, Taliesin was feeling social and was willing to speak to the girl and answer yes. And just like me at work trying to figure out how to chit chat with fellow employees, the comfort required to say that much took him months.
When we decided to get pregnant we knew this might be the result. I've known my life was worth living and therefore worth passing on, especially if I could make it a better life for my son than I had had- undiagnosed and coping with the emotional strain of a sometimes horridly abusive home. As much as I want to ease the difficulties, I know I won't ever be able to completely make them disappear for him, just like I can't do that for myself. Like me, he'll be likely to susceptible to episodes of anxiety and depression. Like me, he'll probably have trouble seeing into his own mind to understand the emotions churning there.
I hope that like me he'll have a passionate commitment to justice, gentleness, and truth. I hope that like me, he'll be able to take a fierce joy in obsessively enjoying life. I hope that like me he'll thirst to learn new things all his life. And I hope that, unlike me, he'll learn much earlier in life to love and understand who he is as he goes through every step of life in his own way.
When we got pregnant after a few years of trying, it wasn't too far from our minds. The medical intake forms for the OBGYN asked if there was any history of autism in the family, and I seem to remember joking that I wondered whether the doctor would be surprised if I told him that yes there was a history of autism in the family because I had Asperger Syndrome.
When Taliesin was born I don't remember how it came up but I took one of my blind leaps and somehow ended up disclosing my autism to one of the nurses at the hospital who was absolutely fascinated by me. Talking about my Asperger Syndrome diagnosis can be hard even with people that I trust will react well- even to the point that I've had times that the experience leaves me shaking. But sometimes I just dive in and let it flow. Fortunately it turned out well.
When Taliesin was late with his language development milestones or broke into sobs of tears because a stranger dared smile at him, autism wasn't far from our minds. He was so scared of strangers that we had to tell the people who took care of nursery at the church not to pick him up to calm him down when he was upset. He'd calm down faster if he wasn't also screaming about someone touching and looking at him. Fortunately they were willing to believe us and reported with some bewilderment that our judgement was right, he calmed down faster on the floor than being cuddled by a stranger.
Some family members have kind of started from the assumption that every one of these signals was a definite sign that our little boy was on the autistic spectrum. But we never saw enough to consider it a justified assumption. We've let our pediatricians know our family history and routinely discussed Taliesin's quirks with him. But until recently our pediatricians had never considered that enough symptoms were falling into place to be taken seriously. It always seemed a possibility that Taliesin might just inherit a few of my quirks without getting the whole package. During our last well visit though we explained the severe social anxiety, literal concrete thinking patterns, rigid routines, and ritualistic play patterns that our son was developing. And now we've got a referral to the University for an autism screening. While the result isn't certain, we're feeling more settled that they will make an autism spectrum disorder diagnosis.
I'm starting to see a lot of my own limitations in my son. As we were describing how Taliesin literally took months of acclimatization to be willing to talk to the newly moved in neighbor kids because he'd rather just stand there and smile shyly it made me think of myself as an adult at work. It takes me a long time of adjustment- weeks to months actually-to feel comfortable with a new social group and be ready to do anything much more than just sit there and read by myself. I'm just happy to have people around so that if I choose to take the effort to interact they'll be there for me. After a long time maybe I'll find a few people that I can figure out how to talk to on a more chit chat basis. When changes in seating arrangements force me to sit by new people on a regular basis I quickly become mostly silent and miserable.
Within the last few weeks my son has finally gotten over his initial shyness to try to talk to the new neighbor children. But somehow they are just feeling confused by his choices of conversation- such as what kinds of shoes they are wearing or whether there are ravens on the roof of the building and what noise they make. And yes- he knows what ravens look like, along with a number of other birds because his bird obsessed father has been teaching him. So the little girls he is trying to befriend just ignore him, perhaps just not knowing how to react- especially given his history of not being up to speaking to them. Just to example how firmly that expectation of his silence has formed, Bonnie Jean saw one of these little girls wanting to play with Taliesin's bike but being stopped by her mom who wanted the little girl to ask Taliesin first. The little girl burst into tears, crying that Taliesin wouldn't answer. Fortunately, Taliesin was feeling social and was willing to speak to the girl and answer yes. And just like me at work trying to figure out how to chit chat with fellow employees, the comfort required to say that much took him months.
When we decided to get pregnant we knew this might be the result. I've known my life was worth living and therefore worth passing on, especially if I could make it a better life for my son than I had had- undiagnosed and coping with the emotional strain of a sometimes horridly abusive home. As much as I want to ease the difficulties, I know I won't ever be able to completely make them disappear for him, just like I can't do that for myself. Like me, he'll be likely to susceptible to episodes of anxiety and depression. Like me, he'll probably have trouble seeing into his own mind to understand the emotions churning there.
I hope that like me he'll have a passionate commitment to justice, gentleness, and truth. I hope that like me, he'll be able to take a fierce joy in obsessively enjoying life. I hope that like me he'll thirst to learn new things all his life. And I hope that, unlike me, he'll learn much earlier in life to love and understand who he is as he goes through every step of life in his own way.
Sunday, May 8, 2011
Speaking in Church
I suppose I'm finally considered an adult, first time ever being asked to speak as one of the main speakers on a subject in a family ward on a special occasion. In any case, the Bishop requested I speak to address the concerns and feelings of women who were not mothers on mother's day. He recommended I use as a text the talk on The Eternal Blessings of Marriage by Richard G. Scott. He requested I cover the subject from the subject material of who women are and how they should be treated. I didn't end up using Elder Scott's talk much because its all about how to treat one another within marriage and part of my target audience is, shall we say, unmarried women. And most of what he had to say was about how wonderful marriage was and how we should treat our spouses wonderfully. Not specifically about the concerns of women without children. Given that I'm a married man with a child the talk suffered from problems of me having to establish my authority to speak about such concerns and also from cultural balancing issues were I can't talk about the concerns and feelings such women have without brushing up against and possibly being somewhat critical of the cultural dynamics that create those concerns in the first place. If I don't go far enough I'd be rather irrelevant to actual concerns, if I state the problems with too little delicacy it comes across as an offensive attack on LDS beliefs.
I was only informed of my assignment to write this talk a week and a half ahead of time and only 3 days of that time period were after my finals were done. So lets say this was a rush production. I'm very pleased with how it turned out, however, and several members of the ward thanked me for my comments profusely. Since I figured getting this talk right mattered a lot more than my privacy, I included things that I normally don't talk about. Several parts I actually changed when I actually went to say them, for instance I said "I think it was a miracle I married such a wonderful woman" instead of leaving it as stated in the original planned text. This would have been more polished, but I finished it at 1:30 AM on Sunday morning. So, here is the talk:
I was only informed of my assignment to write this talk a week and a half ahead of time and only 3 days of that time period were after my finals were done. So lets say this was a rush production. I'm very pleased with how it turned out, however, and several members of the ward thanked me for my comments profusely. Since I figured getting this talk right mattered a lot more than my privacy, I included things that I normally don't talk about. Several parts I actually changed when I actually went to say them, for instance I said "I think it was a miracle I married such a wonderful woman" instead of leaving it as stated in the original planned text. This would have been more polished, but I finished it at 1:30 AM on Sunday morning. So, here is the talk:
After five and a half years of being married, my wife gets to celebrate Mother’s Day today for the first time as a mother. We had planned to start having children as soon as we had the medical insurance, but soon after getting married we discovered that unless we found a cure for some medical problems we had, we would likely never have any children at all. With little money, even less medical care, and major life crises that repeatedly interrupted our progress, it was far from certain that Mother’s Day was ever going to be for us instead of just for our parents. After three years of trying, a lot of prayer, and the help of an excellent doctor we were finally blessed with our little son. I like to say he’s our little miracle.
There are so many ways he’s our little miracle. Neither Bonnie Jean or I were likely to marry at all in the first place, the medical condition we faced is rare enough many doctors are unfamiliar with it, and the pregnancy was difficult enough at the end that the doctor had us coming twice a week just to make sure our son’s heart was still beating strong. As wonderful as our little son is and as much joy as he brings to our hearts, it doesn’t change the reality that miracles don’t always happen. We like reading of such miracles in the scriptures and there are many examples including the birth of Samuel, Isaac, Samson, John the Baptist, and arguably even Christ himself. But there are some things I’d like to point out about these miraculous births. First, those mothers weren’t blessed with children because they became more righteous. The scriptures explicitly describe these women as being extremely righteous and several of them had lived long lives without children before the miracle happened. Second, the scriptural pattern suggests that if the Lord hadn’t had in mind for them an assignment to raise a specific child to do a specific thing, they would have remained childless.
Though having children is something we yearn for, not everyone gets the same assignments in life. Speaking of children in this way reminds me of when I applied for a mission call. When they raised the bar they not only decided to raise the spiritual bar, but also the medical requirements so that mission presidents could focus on leading groups of missionaries and not patients. Even though my medical problems are mild enough no one would have dreamed they’d disqualify me under the older rules, no matter how many months I spent trying to convince the missionary department otherwise, I was honorably excused from serving. The Lord didn’t have that calling and assignment in mind for me and not because I had committed any moral transgression. It was still difficult to live with at times because in the past we let serving a mission practically define what it meant to be a worthy spiritual 19 year old man in the church. Similarly, I think we accidentally let motherhood be the definition of worthy womanhood.
No one would criticize the prophetess Deborah, who helped Barak to defeat the Canaanite King Sisera, because we remember her for something other than the children that we don’t even know if she ever had. What matters is that she received assignments from the Lord and fulfilled them. Today on Mother’s Day I think we should pay tribute not just to the women who have had the opportunity to be mothers, but also to all women who have touched our lives for good. From my own life, I can still recall a seminary teacher I had who was so Christ like that it didn’t even matter what she taught or what she said in her lessons, I could learn how to be a better person just by watching her actions. The compassion she would express in describing someone, the comments she would make about our spirituality, and the love she would express in describing some of the more disruptive students in our class would tell me volumes about how to love people. I knew another woman who recently passed away as a consequence of an epileptic seizure who used to come to church wearing a bicycle helmet to protect her head if she fell during a seizure. The helmet always had flowers in it. If there was anyone who could take a problem in life in stride with grace and dignity it was her. Her gentleness, happiness, and love she always seemed to be overflowing with brought happiness to those around her. She and her husband were always ready to serve, as I can well remember when one of the major portions of the work we had to do for my eagle scout only worked because they helped me. I can also remember an elderly mother and daughter in our ward who were probably the best geneologists I’ve ever known. They used their own family names to send our ward youth to the temple for monthly baptism trips on a regular basis. We had a good-sized mutual program and probably cleared through several hundred names each time. When the trips stopped if I recall it was because the bishop felt some of us youth were too rowdy for the temple, not because we had run out of names. I can remember my trombone tutor who said she always had wanted to either have a lot of children or teach a lot of children. She never had the children, but made up for it with the many she taught. She demanded excellence and enriched my life as I learned to appreciate music and play the trombone. She didn’t only teach in public schools and in private tutoring but also organized trombone choirs and sponsored me into summer bands and competitions that I couldn’t have entered easily because I was home schooled. We as a church have many opportunities to celebrate the goodness, the accomplishments, and the contributions made by the women in our midst married or unmarried, mothers or not mothers. From the writing of the hymnbooks we use, the founding of the primary, the vital work of the Relief Society, and many other contributions that women have made we cannot forget the women in the church. We honor women who sacrifice so much as mothers, but just like for Deborah sometimes God might have in mind a different kind of miracle in mind.
In Isaiah chapter 54 we read:
Sing, O barren, thou that didst not bear; break forth into singing, and cry aloud, thou that didst not travail with child: for more are the children of the desolate than the children of the married wife, saith the Lord.
Though Isaiah was describing the house of Israel and the latter day church as a whole, this promise is a powerful reminder that no matter what seems to be the situation now, in the eternities God has not forgotten us and is eagerly and powerfully desiring to bless us. The future of the House of Israel couldn’t be predicted from how many children Abraham had when he was 85 years old, so God’s approval and future blessings of us can’t be guessed just by looking at whether we are married and blessed with many children.
When I was a teen, my mother sternly told me that if she ever heard of me disrespecting any girl that I would be in the biggest trouble ever. My father was an excellent example in respecting my mother, so I tried to take the message to heart. I started watching my leaders and teachers in the ward to see how they treated and talked about their wives and former girlfriends. One of the most prominent good examples I saw was my seminary teacher and her husband. I got to know them fairly well over the years because besides being my seminary teacher my father and I were their home teachers and their family company later hired me. I never once saw either of them say a disrespectful word against the other or any moment where frustrations seemed to become more important to them than their affection. I’ve tried to imitate the intense goodness and affection they showed and also the level of respect my father has shown my mother ever since I can remember. While marriage is a marvelous place to build and polish the skills of love and self-control, we shouldn’t forget that the basic principles of treating one another with respect are the same in and out of marriage. My mother’s admonition that I had to treat all women with respect wasn’t just proper because I might marry one of them or because it was practice for how I’d treat my wife later. It was important because she wanted me to be the kind of person who didn’t feel that I could disrespect a woman just because she was a woman. May all the women in our lives receive the courtesy, respect, and honor from us that they deserve as children of our Heavenly Father.
Thursday, March 31, 2011
Scanning
In the short story "Scanners Live in Vain," there is a social elite who have had their access to their basic five senses removed surgically, only able to be restored at temporary stretches by another procedure. Basic self awareness and care has to be done by using surgically embedded computer equipment to "scan" themselves. This arrangement allows basic functioning and survival, but is inefficient enough that during a group meeting, they have to scan each other to detect day to day things like broken fingers.
So today my wife asked me how I felt or how I was doing. I reported that I felt fine, but that me being me, I might not know for a while if there was any change in status or how significant it might be. I tend to be somewhat blind to my emotions. This can be true to the extent that sometimes I have to read myself by observing bodily symptoms. For instance the other day I was running late to work and wanted to print off a practice exam so I could keep working on it during my lunch break. The professor threatened that if we didn't do these practice exams we would flunk the actual midterm and the midterm was tomorrow. I went to print, but the computer couldn't see the printer through the USB hub. So after repeated experimentation I decided to move the usb connection out of the hub and into the computer directly. Then I could print. But the paper ran out. So I had to get more paper. The office floor was rather covered with stuff and I had to dance on tip toe around objects to avoid stepping on anything I didn't mean to. Having crossed the floor, I had to remove a stack of objects from on top of the ream of paper to be able to get any out. After reorganizing the section of the closet I needed to get at, I danced back across the room to the printer, removed a large stack of items in front of the printer tray so I could open it, opened it, loaded it, finished the print job, put all the items back on the shelf in front of the print tray where they belonged, and dashed to work having eaten probably only half the lunch I normally would and having a rather small dinner to cover me for the rest of the night. I arrived on time, but only by a margin of perhaps 30 seconds. As the phone calls begin, I wondered to myself, "odd, I am having the swelling in the throat feeling accompanied by a strong gag reflex that is characteristic of my bodily state when under extreme or chronic stress, I presume I must be stressed, I wonder why?" After thinking about it for a few moments, I concluded my hurried meal and dance with the printer and office must have stressed me despite being free from any acute sense of aggravation or emotional conflict.
This is typical of my emotional experience. For another example, I have gone through several weeks of significant depression before realizing with the help of my wife that I was feeling depressed.
So, its cancer. How do I feel? I don't know. I'm feeling less worried than I might because I know the general category of cancer involved has a lower than most fatality rate. But I also don't know the specifics of how this particular case compares to the typical and lower than most isn't exactly comforting because it still involves a significant number of fatalities. Little comments and signals suggest a worry that she might not ever see my new apartment, when I presumed before that this would happen with the year. That level of worry transmits itself to me, and I worry. I've been hoping everybody would stay around long enough for my son to remember all of his grandparents in some meaningful way. But will that happen? I don't know anymore.
How do I feel? I don't know, I'm still scanning in vain.
This post was written just after midnight of 3-27-11, but post dated to 3-31-11.
So today my wife asked me how I felt or how I was doing. I reported that I felt fine, but that me being me, I might not know for a while if there was any change in status or how significant it might be. I tend to be somewhat blind to my emotions. This can be true to the extent that sometimes I have to read myself by observing bodily symptoms. For instance the other day I was running late to work and wanted to print off a practice exam so I could keep working on it during my lunch break. The professor threatened that if we didn't do these practice exams we would flunk the actual midterm and the midterm was tomorrow. I went to print, but the computer couldn't see the printer through the USB hub. So after repeated experimentation I decided to move the usb connection out of the hub and into the computer directly. Then I could print. But the paper ran out. So I had to get more paper. The office floor was rather covered with stuff and I had to dance on tip toe around objects to avoid stepping on anything I didn't mean to. Having crossed the floor, I had to remove a stack of objects from on top of the ream of paper to be able to get any out. After reorganizing the section of the closet I needed to get at, I danced back across the room to the printer, removed a large stack of items in front of the printer tray so I could open it, opened it, loaded it, finished the print job, put all the items back on the shelf in front of the print tray where they belonged, and dashed to work having eaten probably only half the lunch I normally would and having a rather small dinner to cover me for the rest of the night. I arrived on time, but only by a margin of perhaps 30 seconds. As the phone calls begin, I wondered to myself, "odd, I am having the swelling in the throat feeling accompanied by a strong gag reflex that is characteristic of my bodily state when under extreme or chronic stress, I presume I must be stressed, I wonder why?" After thinking about it for a few moments, I concluded my hurried meal and dance with the printer and office must have stressed me despite being free from any acute sense of aggravation or emotional conflict.
This is typical of my emotional experience. For another example, I have gone through several weeks of significant depression before realizing with the help of my wife that I was feeling depressed.
So, its cancer. How do I feel? I don't know. I'm feeling less worried than I might because I know the general category of cancer involved has a lower than most fatality rate. But I also don't know the specifics of how this particular case compares to the typical and lower than most isn't exactly comforting because it still involves a significant number of fatalities. Little comments and signals suggest a worry that she might not ever see my new apartment, when I presumed before that this would happen with the year. That level of worry transmits itself to me, and I worry. I've been hoping everybody would stay around long enough for my son to remember all of his grandparents in some meaningful way. But will that happen? I don't know anymore.
How do I feel? I don't know, I'm still scanning in vain.
This post was written just after midnight of 3-27-11, but post dated to 3-31-11.
Tuesday, September 28, 2010
Flu Shot
I've got the sore arm today. Luckily I don't do any real manual labor at work so that doesn't really matter.
Tuesday, September 8, 2009
Family Home Emergency Room
I've spent the last two Monday's in the emergency room with a different kid. I joked with the nurse if we kept this up we'd be bringing in the baby next week. She told me I'd better not. Had the same doctor each time. Its fun doing this stuff when the power of attorney hasn't arrived yet. Doable, just more interesting.
Really, one of these days I'm going to get around to blogging about the sword of laban and its possible interpretations as a cultural symbol and how that relates to the concept of religious freedom as practiced in the Book of Mormon. But lately I've been a bit busy.
Really, one of these days I'm going to get around to blogging about the sword of laban and its possible interpretations as a cultural symbol and how that relates to the concept of religious freedom as practiced in the Book of Mormon. But lately I've been a bit busy.
Wednesday, July 29, 2009
Celebration
So Bonnie Jean went in for a kind of off the wall lab test the other day that we half expected the insurance not to cover. We have an HMO after all. When the "NOT A BILL" statement arrived and it appeared we had been billed for two instances of this particular lab and the pending charge exceeded $800 we were kind of holding our breath. Not that we couldn't pay that and much more, its just a very large chunk of cash to give away over not knowing ahead of time whether the lab would be covered. We were worried enough that we actually even tried to call the lab to protest that the statement they sent seemed to show them performing the test twice when the doctor only ordered it once. They didn't answer or even callback, so we were kind of worried. We are very happy to get this in the mail today:

I guess there's hope for our HMO after all.
I guess there's hope for our HMO after all.
Friday, November 21, 2008
Shots and games
Today I got my first flu shot. Work was offering them for free so I figured I might as well cash in on it. So that was happy. If the scientists guessed right on which strains will be prevalent I might just avoid getting sick.
In other news, Geneforge 5 finally came out two days ago and I'm very happy about that. If only I actually had real time to play said video game. I must say the geneforge games are the only games that ever made me think about a book by C.S. Lewis before.
In other news, Geneforge 5 finally came out two days ago and I'm very happy about that. If only I actually had real time to play said video game. I must say the geneforge games are the only games that ever made me think about a book by C.S. Lewis before.
Tuesday, October 7, 2008
I hate my insurance/medical stuff continues
So I've been having some medical fun recently. My pharmacy insurance refuses to cover many medications they consider "routine" unless they are ordered from the insurance directly. But there's no convenient way to find that out until after filling it the first time at the local pharmacy, which they will cover. Its not based on how often you take it, its based on their list of what they consider routine. So recently I started a "routine" medication. Instead of telling me that directly they sent me a letter advising me my medication required preapproval or they'd charge me full price for the medication I had already filled with preapproval already obtained. I called my doctor repetitively asking them to get with my insurance to give another post approval, but they didn't call me back with anything useful, basically said we don't know what they're talking about either. Finally I called the insurance and they said oh we're sorry, when we send preapproval required letters what we really mean is buy from us or else. I asked if they could manage the transition to buying from them, they said no. So I called my doctor and asked him to send in a prescription to the insurance. He didn't do it. Later on trying to check if he had, I was logging into the insurance website and lo and behold, there was a button for initiate this order on our side. So I did.
But in the meantime with all these delays I ran out of medication and it was labeled on a big red sticker DON'T SKIP DOSES. So I called the pharmacy to see exactly what the "or else" of buying the medicine locally actually was. It was no coverage, but they suggested the insurance might make an exception. The insurance claimed not only under no circumstance would they cover me locally, but tried to tell me the local pharmacy wasn't even allowed to sell me a partial month supply without me getting doctors permission first. Called the pharmacy back, and they said no, they were happy to sell me the drug for $10 a pill for any amount I chose under 30 days. But, the pharmacist also said all I really needed to do was tide myself over with an over the counter substitute in the meantime and I'd be fine.
I really hate feeling like I'm fighting every step of the way just to get my medications. My doctor did contribute to the problem, but every single time I've interacted with the pharmacy insurance they've told me something that wasn't right.
So, getting back to my life, today I finally managed to get in the surgery follow up visit I had to skip when my insurance was canceled. I think I've freaked out the doctor. As I told him of every symptom aside from bleeding had continued he asked me if my insurance would cover this sort of thing. I asked him what he meant. You know its time to worry when he answers "I mean they wouldn't cover me sending you to the mayo clinic."
He clarified he might not have to do that, but he very well might like to. So I'm scheduled for another surgical operation where they just look around with a camera to see what in the world is going on. Then we go from there.... wherever that might be but apparently not to the mayo clinic because my insurance won't cover it.
But in the meantime with all these delays I ran out of medication and it was labeled on a big red sticker DON'T SKIP DOSES. So I called the pharmacy to see exactly what the "or else" of buying the medicine locally actually was. It was no coverage, but they suggested the insurance might make an exception. The insurance claimed not only under no circumstance would they cover me locally, but tried to tell me the local pharmacy wasn't even allowed to sell me a partial month supply without me getting doctors permission first. Called the pharmacy back, and they said no, they were happy to sell me the drug for $10 a pill for any amount I chose under 30 days. But, the pharmacist also said all I really needed to do was tide myself over with an over the counter substitute in the meantime and I'd be fine.
I really hate feeling like I'm fighting every step of the way just to get my medications. My doctor did contribute to the problem, but every single time I've interacted with the pharmacy insurance they've told me something that wasn't right.
So, getting back to my life, today I finally managed to get in the surgery follow up visit I had to skip when my insurance was canceled. I think I've freaked out the doctor. As I told him of every symptom aside from bleeding had continued he asked me if my insurance would cover this sort of thing. I asked him what he meant. You know its time to worry when he answers "I mean they wouldn't cover me sending you to the mayo clinic."
He clarified he might not have to do that, but he very well might like to. So I'm scheduled for another surgical operation where they just look around with a camera to see what in the world is going on. Then we go from there.... wherever that might be but apparently not to the mayo clinic because my insurance won't cover it.
Thursday, August 14, 2008
Benefits restored
At my work I recently had my benefits terminated because if a leave of abscence goes beyond the first day of a month they are automatically terminated. I tried calling in beforehand to make sure that sort of thing wouldn't happen but all they would say is something along the lines of "you should be fine, it only matters if your leave is like 30 days long". My HR manager tells me she often has to call several times in a row to get proper information so this isn't really anything surprising. Ironically, I officially was back to work on the 1st of the month, but the 1st just so happened to be my normal scheduled day off. I called in beforehand to see if I needed to come in on the 31st or if I should wait till the 2nd, but was told don't worry about it by my manager who according to job description isn't supposed to know anything about or be involved in benefits stuff that would influence that decision. Since there was both corporate HR and local management making mistakes causing the problem to happen, corporate was willing to fix it. Not that that improves my opinion of them much any. I called in to find out the status of the case that had been submitted and the guy spent probably 5 minutes just arguing with me that it was somehow against policy or unethical for me to be calling in to find out what was going on. All I asked was "what's the status of my case?" and he was much more interested in lecturing me on that only managers could have cases submitted and when I told him my HR manager did it he demanded to know who my HR manager was... the guy was really not the type that should be employed in a service type position.
But in any case, I can now have followup visits for my surgery, Bonnie can have physicals, and something else can go catastrophically wrong with our heath this year without it totally ruining our finances. Feels wonderful.
But in any case, I can now have followup visits for my surgery, Bonnie can have physicals, and something else can go catastrophically wrong with our heath this year without it totally ruining our finances. Feels wonderful.
Thursday, July 17, 2008
Surgery all done
I am back home and in minimal pain so far from the operation that corrected the medical problem unveiled in the the bleeding referred to several posts back. If you feel like finding out more gross details go look up in a history book Rousseau's primary medical problem (other than later life insanity). The anesthesia left me more shaky than loopy but the doctor says I'm not allowed to sign any legal documents for at least 24 hours. Its kind of funny though, never even saw the surgeon, I don't think he even entered the room until after I was out and he didn't come in after I woke up.
Wednesday, July 16, 2008
Invasive questions
Somehow it offends me when an intake form to the dentist office asks me if I have any psychiatric conditions. About the only reason the dentist could care to know is if someone hallucinates during an examination he'll know to keep drilling instead of freak out, call an ambulance, and then have to reschedule the appointment after disturbing everyone in the lobby.
I've been filling out a lot of intake forms recently for different doctors, and they all ask that question or similar ones. Given the amount of prejudice and/or disbelief I can and have invoked by saying the words "Asperger's syndrome" I've mostly fallen into a need to know habit with that particular diagnosis with anyone who knows me personally enough to hurt me. CrouchingOwl is different because my more or less anonymous cyber identity hardly exists without it being associated with the diagnosis, so no reason not to disclose and have one area where I can talk about it as if it were something normal people wouldn't freak out about. Not that I've ever had a medical professional react in those ways, but I've lived and interacted enough in the online "aspies" community to know that one can't guarantee any particular level of professionalism or real knowledge of such a specialized condition from any doctor who doesn't specialize in that area.
So, I continue to agonize on exactly how to honestly fill out such forms. If they ask for psychiatric conditions I have a very easy solution. Asperger's syndrome is psychological, not psychiatric. Psychiatry involves medical health insofar as it can be solved by the dispensing of pharmaceuticals, with a fringe movement where Freud lives on. Asperger's has never been treated successfully with drugs over any broader population than fluke anecdotal accounts. Certain drugs have been used with more or less success to manage the intensity of certain traits such as depressants to lessen obsessive interests, stimulants to do I can't remember what now, and anti depressents for the obscure beneficial side effects they have (which are so broad they are sometimes used as a "brain tune up" drug more than anything) or for, you guessed it, comorbid depression. But those are symptom management, none of them touch the central features of the condition, unlike how anti depressents directly treat depression, anti convulsants directly target seizures, and anti psychotics bulldoze through higher thought processes to leave less room for neurosis. So its not psychiatric.
But some of the forms use the word psychological. For as much as they are planning on looking at the form I could probably leave it blank and nobody would care or notice. Why should I give the doctor a chance to lecture me on what is or is not possible in my volunteered information based on such critical factors such as not walking the right way, having emotions, or being able to make eye contact upon command? Those are all reasons I've known people who have had their primary care giver state as reasons their diagnosis are incorrect.
I'm probably stressing too much about it. What I should probably do is check the box and not write anything in the explanation box and if they ask about it ask in return "Can you tell which condition it is already? No?, then it doesn't matter to what you're doing right now so lets get back on subject."
I've been filling out a lot of intake forms recently for different doctors, and they all ask that question or similar ones. Given the amount of prejudice and/or disbelief I can and have invoked by saying the words "Asperger's syndrome" I've mostly fallen into a need to know habit with that particular diagnosis with anyone who knows me personally enough to hurt me. CrouchingOwl is different because my more or less anonymous cyber identity hardly exists without it being associated with the diagnosis, so no reason not to disclose and have one area where I can talk about it as if it were something normal people wouldn't freak out about. Not that I've ever had a medical professional react in those ways, but I've lived and interacted enough in the online "aspies" community to know that one can't guarantee any particular level of professionalism or real knowledge of such a specialized condition from any doctor who doesn't specialize in that area.
So, I continue to agonize on exactly how to honestly fill out such forms. If they ask for psychiatric conditions I have a very easy solution. Asperger's syndrome is psychological, not psychiatric. Psychiatry involves medical health insofar as it can be solved by the dispensing of pharmaceuticals, with a fringe movement where Freud lives on. Asperger's has never been treated successfully with drugs over any broader population than fluke anecdotal accounts. Certain drugs have been used with more or less success to manage the intensity of certain traits such as depressants to lessen obsessive interests, stimulants to do I can't remember what now, and anti depressents for the obscure beneficial side effects they have (which are so broad they are sometimes used as a "brain tune up" drug more than anything) or for, you guessed it, comorbid depression. But those are symptom management, none of them touch the central features of the condition, unlike how anti depressents directly treat depression, anti convulsants directly target seizures, and anti psychotics bulldoze through higher thought processes to leave less room for neurosis. So its not psychiatric.
But some of the forms use the word psychological. For as much as they are planning on looking at the form I could probably leave it blank and nobody would care or notice. Why should I give the doctor a chance to lecture me on what is or is not possible in my volunteered information based on such critical factors such as not walking the right way, having emotions, or being able to make eye contact upon command? Those are all reasons I've known people who have had their primary care giver state as reasons their diagnosis are incorrect.
I'm probably stressing too much about it. What I should probably do is check the box and not write anything in the explanation box and if they ask about it ask in return "Can you tell which condition it is already? No?, then it doesn't matter to what you're doing right now so lets get back on subject."
Thursday, June 19, 2008
Meowing at doctors
I almost meowed at a doctor today but got distracted by paying attention to the IV that was in my arm. This morning I discovered bleeding where one shouldn't and when I told the doctor over the phone it hadn't stopped yet he wanted me seen right away instead of waiting for my day off. So I switched my day off and headed in. The doctor couldn't figure it out just from my basic description so he had me do blood and urine labs and a CAT scan. Thus my almost meowing. I have a follow up scheduled for later. Unfortunately I'll have to take off work to make the appointment.
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