After a week of work I can conclusively determine that rest is an under-rated luxury. I don't know how people with very physical jobs manage to return to work; I have a largely cerebral job that involves mainly sitting in a comfy chair and trying to maintain a compassionate interest in the lives of others. By Thursday I was too tired to think of going to bed.
I am proud of myself for getting through it, however, even if that meant a few days of mental countdowns to the weekend when I could get some rest. I still didn't get as much rest as I ought to have had, but still much more than I got during the week. I continue to try to find a way of changing my schedule to allow for more rest, but just as I remind my clients, a life has to have a balance of work, exercise, rest and recreation. My challenge is that as my time for rest increases, it impacts on the time allotted to the other activities. It becomes a challenge to figure out what part of the pie can be decreased without decreasing the overall balance.
I need to have my quilting in the mix, for example. Some kind of emotional creative expression is critical in my overall sense of balance, even more important now that I have returned to work. It's not that I have to quilt for 3 hours a night, but I get next to nothing done in an hour or less (I'm just not a quick quilter). So I suppose trying to cap it at 2 hours might be helpful. Wednesday nights are church, and I think I might as well go to bed and read after that class, because by the time I get home its either stay up too late or don't get started. My goal has been 20 minutes of exercise, but that hasn't happened yet. I find it ironic that I need 20 minutes of exercise to increase my stamina, but don't yet have the stamina to do it.
Sunday, September 22, 2013
Saturday, July 27, 2013
http://www.radiolab.org/blogs/radiolab-blog/2013/jul/02/allys-choice/
http://www.radiolab.org/blogs/radiolab-blog/2013/jul/02/allys-choice/
I hope everyone listens to this. I will write about it later today, when my emotions are not so intense.
I hope everyone listens to this. I will write about it later today, when my emotions are not so intense.
Thursday, July 25, 2013
How do you prove you're not disabled?
I am constantly amazed that I can't just tell myself to "get on with it" and get something productive done. Sure, I'm on sick leave, but that's because of the work I do, not because having someone rearrange the bones in your hand and remove bone from your hip is actually disabling. That's the problem with having a disability for me; I spend most of my time trying to prove to myself that I have no lack of ability in anything and that disability doesn't mean "not able", no matter how the word derivation breaks. Any non-productive time risks being defined as "unable".
Of course, that means any limitations are a threat to that self image. Tuesday I went to a concert by the Oregon Army National Guard Band with my husband and his parents. I think we were one of a dozen people who weren't getting the AARP newsletter, though the place was 2/3 full. Which was a real shame, because they were a very talented and diverse set of instrumentalists and they gave a good concert to over a hundred people who couldn't join the National Guard after the Zombie Apocalypse took everyone out that could play anything above kazoo. Next time they really need to work on their publicity.
The brochure about the band at the concert talked about all the benefits, the travel, the extra money, but nowhere did it explicitly state you were actually joining the armed services. I think they may have seen it as not a big selling point. However, the one handed pushups and the physique of this band made it clear that they had to be physically fit; even the pregnant lady was in good shape. Maybe a decade of war will do that to you. That was definitely not the case with the band in the 80's.
I think the Guard Band is a great idea and an awesome way to make money for school doing something you enjoy with other talented people. The regular National Guard might be mobilized to go to Afghanistan and shoot people, but no one mobilizes a band to a war zone. Piccolos don't even hold a pitch in extreme heat or cold, so what would be the point? That's why I joined the Idaho National Guard Army Band in college, despite having been recently diagnosed with a progressive genetic disease that affected joint stability and wound healing. Hang on, I wasn't drunk or anything, I really did think this was a good idea. We were in and out of wars back then too, only back then the danger came from the Soviet Union and Reagan's love of nuclear weapons. He tried to collect nuclear weapons like Paris Hilton collects shoes, and I was sure we were going to end up with a draft to make buying all these bombs and planes make sense. Being on the tarmac playing the flute seemed the safest place to be.
I knew a couple of students in the band, and the worst place they'd ever had to go was Savannah in the summer. They weren't any more likely to run without being chased than I was. Both of them were gay, and one of them was trying harder to be pretty than I was. Most of the members were middle aged and looked as much like Rambo as I look like Angelina Jolie. All I had to do was get through basic training and I would be golden. Ehlers-Danlos Syndrome wasn't on the list of disqualifying conditions, which I assumed meant that I'd be able to handle it; wasn't it "benign hypermobility syndrome" after all? They must have really needed a first flute badly, since a history of ulcers and flat feet are both disqualifying conditions, and I told them about those as well. They really didn't look too closely at the physical; all they cared about was if I made weight. I ate more nasty tasting concoctions and diet bars that summer than actual food to get to the right weight. I think I was born heavier.
I never did get to basic training. One of the last recruits had gotten a stress fracture during basic but was allowed to complete without doing any of the hard stuff, and I figured that I would easily manage a stress fracture and get through if he could. But before I could go, one of my doctors stepped in. He pointed out that a stress fracture in my spine was just as possible, but with more serious complications. A couple of months after that I injured my knee and it became entirely too obvious that if I couldn't walk to the store without damage, I probably couldn't do basic. The commanding officer withdrew my application before I could go. I have an honorable discharge from the military, and for many years refused to admit it was my decision to leave the service, blaming it on overly cautious doctors. I wanted so badly to prove I wasn't disabled.
I now know that's a little like calling Wayne Gretsky a bad athlete because he couldn't score touchdowns. (For non-hockey fans, check Wikipedia). I don't have to be good at everything, or heal as quickly as someone else, or even get as much done as I think I ought. I just have to keep trying to be me. EDS doesn't define me, I do. I don't have to suffer through basic training to prove it.
Of course, that means any limitations are a threat to that self image. Tuesday I went to a concert by the Oregon Army National Guard Band with my husband and his parents. I think we were one of a dozen people who weren't getting the AARP newsletter, though the place was 2/3 full. Which was a real shame, because they were a very talented and diverse set of instrumentalists and they gave a good concert to over a hundred people who couldn't join the National Guard after the Zombie Apocalypse took everyone out that could play anything above kazoo. Next time they really need to work on their publicity.
The brochure about the band at the concert talked about all the benefits, the travel, the extra money, but nowhere did it explicitly state you were actually joining the armed services. I think they may have seen it as not a big selling point. However, the one handed pushups and the physique of this band made it clear that they had to be physically fit; even the pregnant lady was in good shape. Maybe a decade of war will do that to you. That was definitely not the case with the band in the 80's.
I think the Guard Band is a great idea and an awesome way to make money for school doing something you enjoy with other talented people. The regular National Guard might be mobilized to go to Afghanistan and shoot people, but no one mobilizes a band to a war zone. Piccolos don't even hold a pitch in extreme heat or cold, so what would be the point? That's why I joined the Idaho National Guard Army Band in college, despite having been recently diagnosed with a progressive genetic disease that affected joint stability and wound healing. Hang on, I wasn't drunk or anything, I really did think this was a good idea. We were in and out of wars back then too, only back then the danger came from the Soviet Union and Reagan's love of nuclear weapons. He tried to collect nuclear weapons like Paris Hilton collects shoes, and I was sure we were going to end up with a draft to make buying all these bombs and planes make sense. Being on the tarmac playing the flute seemed the safest place to be.
I knew a couple of students in the band, and the worst place they'd ever had to go was Savannah in the summer. They weren't any more likely to run without being chased than I was. Both of them were gay, and one of them was trying harder to be pretty than I was. Most of the members were middle aged and looked as much like Rambo as I look like Angelina Jolie. All I had to do was get through basic training and I would be golden. Ehlers-Danlos Syndrome wasn't on the list of disqualifying conditions, which I assumed meant that I'd be able to handle it; wasn't it "benign hypermobility syndrome" after all? They must have really needed a first flute badly, since a history of ulcers and flat feet are both disqualifying conditions, and I told them about those as well. They really didn't look too closely at the physical; all they cared about was if I made weight. I ate more nasty tasting concoctions and diet bars that summer than actual food to get to the right weight. I think I was born heavier.
I never did get to basic training. One of the last recruits had gotten a stress fracture during basic but was allowed to complete without doing any of the hard stuff, and I figured that I would easily manage a stress fracture and get through if he could. But before I could go, one of my doctors stepped in. He pointed out that a stress fracture in my spine was just as possible, but with more serious complications. A couple of months after that I injured my knee and it became entirely too obvious that if I couldn't walk to the store without damage, I probably couldn't do basic. The commanding officer withdrew my application before I could go. I have an honorable discharge from the military, and for many years refused to admit it was my decision to leave the service, blaming it on overly cautious doctors. I wanted so badly to prove I wasn't disabled.
I now know that's a little like calling Wayne Gretsky a bad athlete because he couldn't score touchdowns. (For non-hockey fans, check Wikipedia). I don't have to be good at everything, or heal as quickly as someone else, or even get as much done as I think I ought. I just have to keep trying to be me. EDS doesn't define me, I do. I don't have to suffer through basic training to prove it.
Thursday, July 4, 2013
ER Again?
I feel like I should be a reviewer for urgent care centers and emergency rooms. I was a "secret shopper" for Panda Express once where you got a free meal and 12 dollars to go to their restaurants and secretly review the quality of the food and how well the franchise was exemplifying the corporate brand image. Being a hungry graduate student, getting a free meal was worth driving a few miles and using a strange bathroom.
The Panda Express company was very focused on the friendliness of its people; were they helpful, did they answer questions, did they make you feel like they genuinely cared about whether or not the orange chicken delighted you? I recall about a page of questions about their attitude, even more than the cleanliness and signage. My experience yesterday highlights how much I wish Panda Express ran an urgent care center.
At the one week follow up on my joint fusion in my thumb, where I was of course not healed enough and too swollen for casting, Dr. H rewrapped and splinted my hand, with the hope of a cast next week. I then got ready to visit my "best friend of all time" (hereinafter called BFOAT) in Pasco. She fortunately had both vacation time and air conditioning, two critical helps after joint surgery in summer. Unfortunately about an hour into the drive I began to have these spiking pains in my hand, as though I had poked a pin in my hand hand from the bone side out, directly under the splint. After 2 more hours of shifting, moving and stuffing things in between the splint and my hand, I finally took the dressing apart until I could take the hard part of the splint off, which instantly reduced the feeling of having something drilling out of my hand. It was now about 7 at night, so,rather than waste ER time, I unwrapped it up so the splint was under my hand, rather than over the top, and figured I would get it 're-wrapped in the morning.
First thing in the morning(in my morning anyway, I did just have surgery and a restless night after all) I went to the urgent care clinic nearest BFOAT's home. It was almost empty with three office staff at the front, huddled around the computer monitor. No one was in the waiting room.. I explained the situation, and they responded immediately- with an impressive amount of irritation. The nurse tells me that orthopedists are "picky" about their work; I should go back there. After pointing out a second time the orthopedist in question was 5 hours away, and that they don't have associates in the area, they reluctantly agreed to have me sign in. No quicker than it took to me to sign in, Nurse Ratchet came to the desk to tell me that the doctor wouldn't even look at me without talking to my doctor on the phone directly, which I am expected to arrange. Trying to get two doctors on the phone is like trying to arrange a blind date with a couple of porcupines. She told me if I didn't like that I should go to an emergency room. Since my insurance charges me an extra $100 to go to the ER if I'm not admitted and 're-wrapping,was almost certainly not going to result in hospitalization, I attempted to arrange an appointment between the doctors about 2 1/2 hours from then. They really didn't care what I did until then.
When we went back to the increasingly badly named Healing Waters urgent,care, they were now so busy we would have to take a number to get to the receptionist, who would accept the call arranged on my cell phone once their doctor was between appointments presuming my doctor was also available, and they would discuss whether the doctor would see me or not. After all this time, my hand was becoming increasingly painful, the number of children in the waiting room wasn't helping, and my pain pill was wearing off. I ended up checking Health Grades online for the best rated ER in the area and decided to bite the bullet, pay the $100 and get my hand 're-wrapped before I started going postal.
The staff at Healing Waters may not have been indifferent and may in fact be kind, caring people who were not often confronted with people asking for post-surgical assistance. They may have been concerned that they would do more harm than good. But they also never offered to bring the doctor out to to see what was the matter or let me explain the situation to the doctor directly so he or she could decide if this was a task within his competence. I'm assuming that the urgent care center hires medical professionals capable of wrapping broken thumbs or wrists.Just because a scalpel broke it, it is still essentially just a broken bone. They never offered to,call my physicians office for me: do you know how hard it is to use a cell phone with one hand? It's like trying to hold onto a small greased harmonica and try to play Yankee doodle at the same time. They didn't even tell me where the ER was, despite knowing that I was from out of town- and based on their name, they were affiliated with the hospital I ended up going to.
Panda Express realized that the food was important but the friendliness and customer service made just as important a contribution. No one wants food from a surly wait staff (except possibly possibly at certain coffee shops whose popularity is based on the misanthropy of its staff). Health care is a service business in which your clientele is generally in much more discomfort than hunger is and they are seeking comfort and reassurance during a difficult time. Is it too much to ask that the front desk appear to care about more than your ability to pay? Would it have irreparably damaged them to offer as much information about the hospitals in the area as I would have gotten from the clerk at Motel 6? I am going to have to pay at least an extra $100 for services they could have done had they been interested in me as more than a problem to be avoided.
Paula Deen was fired from the Food Network not because she was racist: almost every comment from people outside this one lawsuit has been positive and denied ever having had a negative experience with her. Who she was personally didn't enter into it; her public image represents the company's reputation and therefore their bottom line. In an era in which customers can and do rate their doctors and hospitals online as often as their plumber or landscaper, front desk staff need to be evaluated on how well they represent the facility brand image. $100 and 6 hours of waiting is not something I will be likely to forget.
The Panda Express company was very focused on the friendliness of its people; were they helpful, did they answer questions, did they make you feel like they genuinely cared about whether or not the orange chicken delighted you? I recall about a page of questions about their attitude, even more than the cleanliness and signage. My experience yesterday highlights how much I wish Panda Express ran an urgent care center.
At the one week follow up on my joint fusion in my thumb, where I was of course not healed enough and too swollen for casting, Dr. H rewrapped and splinted my hand, with the hope of a cast next week. I then got ready to visit my "best friend of all time" (hereinafter called BFOAT) in Pasco. She fortunately had both vacation time and air conditioning, two critical helps after joint surgery in summer. Unfortunately about an hour into the drive I began to have these spiking pains in my hand, as though I had poked a pin in my hand hand from the bone side out, directly under the splint. After 2 more hours of shifting, moving and stuffing things in between the splint and my hand, I finally took the dressing apart until I could take the hard part of the splint off, which instantly reduced the feeling of having something drilling out of my hand. It was now about 7 at night, so,rather than waste ER time, I unwrapped it up so the splint was under my hand, rather than over the top, and figured I would get it 're-wrapped in the morning.
First thing in the morning(in my morning anyway, I did just have surgery and a restless night after all) I went to the urgent care clinic nearest BFOAT's home. It was almost empty with three office staff at the front, huddled around the computer monitor. No one was in the waiting room.. I explained the situation, and they responded immediately- with an impressive amount of irritation. The nurse tells me that orthopedists are "picky" about their work; I should go back there. After pointing out a second time the orthopedist in question was 5 hours away, and that they don't have associates in the area, they reluctantly agreed to have me sign in. No quicker than it took to me to sign in, Nurse Ratchet came to the desk to tell me that the doctor wouldn't even look at me without talking to my doctor on the phone directly, which I am expected to arrange. Trying to get two doctors on the phone is like trying to arrange a blind date with a couple of porcupines. She told me if I didn't like that I should go to an emergency room. Since my insurance charges me an extra $100 to go to the ER if I'm not admitted and 're-wrapping,was almost certainly not going to result in hospitalization, I attempted to arrange an appointment between the doctors about 2 1/2 hours from then. They really didn't care what I did until then.
When we went back to the increasingly badly named Healing Waters urgent,care, they were now so busy we would have to take a number to get to the receptionist, who would accept the call arranged on my cell phone once their doctor was between appointments presuming my doctor was also available, and they would discuss whether the doctor would see me or not. After all this time, my hand was becoming increasingly painful, the number of children in the waiting room wasn't helping, and my pain pill was wearing off. I ended up checking Health Grades online for the best rated ER in the area and decided to bite the bullet, pay the $100 and get my hand 're-wrapped before I started going postal.
The staff at Healing Waters may not have been indifferent and may in fact be kind, caring people who were not often confronted with people asking for post-surgical assistance. They may have been concerned that they would do more harm than good. But they also never offered to bring the doctor out to to see what was the matter or let me explain the situation to the doctor directly so he or she could decide if this was a task within his competence. I'm assuming that the urgent care center hires medical professionals capable of wrapping broken thumbs or wrists.Just because a scalpel broke it, it is still essentially just a broken bone. They never offered to,call my physicians office for me: do you know how hard it is to use a cell phone with one hand? It's like trying to hold onto a small greased harmonica and try to play Yankee doodle at the same time. They didn't even tell me where the ER was, despite knowing that I was from out of town- and based on their name, they were affiliated with the hospital I ended up going to.
Panda Express realized that the food was important but the friendliness and customer service made just as important a contribution. No one wants food from a surly wait staff (except possibly possibly at certain coffee shops whose popularity is based on the misanthropy of its staff). Health care is a service business in which your clientele is generally in much more discomfort than hunger is and they are seeking comfort and reassurance during a difficult time. Is it too much to ask that the front desk appear to care about more than your ability to pay? Would it have irreparably damaged them to offer as much information about the hospitals in the area as I would have gotten from the clerk at Motel 6? I am going to have to pay at least an extra $100 for services they could have done had they been interested in me as more than a problem to be avoided.
Paula Deen was fired from the Food Network not because she was racist: almost every comment from people outside this one lawsuit has been positive and denied ever having had a negative experience with her. Who she was personally didn't enter into it; her public image represents the company's reputation and therefore their bottom line. In an era in which customers can and do rate their doctors and hospitals online as often as their plumber or landscaper, front desk staff need to be evaluated on how well they represent the facility brand image. $100 and 6 hours of waiting is not something I will be likely to forget.
Friday, June 28, 2013
Lets give this a,shot.
I am not sure how good I will be at this or what is motivating it. Historically I have been an inadequate diarist unless completing one involves a grade, regardless of the fact that I highly recommend the use of them to clients. And perhaps the cognitive dissonance of recommending something that I don't actually do myself is encouraging me to stretch myself in new ways, especially as I am currently recovering from surgery and have time but not the ability to sew.. Another way of being flexible I suppose.
I started this as Tales of a Gumby Girl because flexibility has been such a huge factor in my life. Being flexible, learning to be less flexible, and finding out that being flexible can be it's own form of rigidity.In the practical sense, my flexibility comes from a disease called Ehlers-Danlos Syndrome. It's a connective tissue disorder: the portion of the body that connects part A to Part B and ensures that Part A doesn't collapse into a pile of goo under stress. In my case, the problem comes from collagen, the stuff pumped into lips to make them fatter and eaten with an enormous amount of artificial colors, flavors and sweeteners in that childhood favorite Jello. If only eating foods never meant to be found in nature would fix it; my tongue would be permanently "blue raspberry". Anyway, from my earliest memories I have been bizarrely flexible, which made yoga easy and falling over things even easier. My childhood was marked by injuries, disorders, diseases and other things that "just never happen". It's less like being struck by lightning twice and more like developing pneumonia from aspirated custard after being hit in the face with a pie. There are a bunch of other things that also happen, but the central point is that much of my life has been about learning to adjust to being just a bit different in subtle ways that only show up when bizarre things happen. Since I wasn't diagnosed until I was 18, I just figured God had a strange sense of humor and tried to roll with the punches.
The physical really does shape the emotional and spiritual, which you can tell if you've visited any holy places or prisons, as I have. Your surroundings shape your experience, and my surroundings were unpredictable, ridiculous, and at times scary and yet to thrive it was important to focus on moving around it if I could and with as much humor as I could muster if I couldn't. This has helped more than hurt me over the years, though I confess to being known, not always complementary, as "queen of the positive reframe". I will find the best in a situation even if it kills me.
Recently I've been looking for other people people who are blogging about living with EDS, but mostly found people focused on the disease, or more truthfully dis-ease. I don't think it helps me to focus on the pain and misery of life; for that I could watch the news. In my opinion it's better to figure out how to see the humor in it than deal with the unfairness which is, after all, part of God's overall plan. S/he has always been a big fan of underdogs and ridiculous situation. So this is my attempt at blogging about my life.
I started this as Tales of a Gumby Girl because flexibility has been such a huge factor in my life. Being flexible, learning to be less flexible, and finding out that being flexible can be it's own form of rigidity.In the practical sense, my flexibility comes from a disease called Ehlers-Danlos Syndrome. It's a connective tissue disorder: the portion of the body that connects part A to Part B and ensures that Part A doesn't collapse into a pile of goo under stress. In my case, the problem comes from collagen, the stuff pumped into lips to make them fatter and eaten with an enormous amount of artificial colors, flavors and sweeteners in that childhood favorite Jello. If only eating foods never meant to be found in nature would fix it; my tongue would be permanently "blue raspberry". Anyway, from my earliest memories I have been bizarrely flexible, which made yoga easy and falling over things even easier. My childhood was marked by injuries, disorders, diseases and other things that "just never happen". It's less like being struck by lightning twice and more like developing pneumonia from aspirated custard after being hit in the face with a pie. There are a bunch of other things that also happen, but the central point is that much of my life has been about learning to adjust to being just a bit different in subtle ways that only show up when bizarre things happen. Since I wasn't diagnosed until I was 18, I just figured God had a strange sense of humor and tried to roll with the punches.
The physical really does shape the emotional and spiritual, which you can tell if you've visited any holy places or prisons, as I have. Your surroundings shape your experience, and my surroundings were unpredictable, ridiculous, and at times scary and yet to thrive it was important to focus on moving around it if I could and with as much humor as I could muster if I couldn't. This has helped more than hurt me over the years, though I confess to being known, not always complementary, as "queen of the positive reframe". I will find the best in a situation even if it kills me.
Recently I've been looking for other people people who are blogging about living with EDS, but mostly found people focused on the disease, or more truthfully dis-ease. I don't think it helps me to focus on the pain and misery of life; for that I could watch the news. In my opinion it's better to figure out how to see the humor in it than deal with the unfairness which is, after all, part of God's overall plan. S/he has always been a big fan of underdogs and ridiculous situation. So this is my attempt at blogging about my life.
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