The Invisible Knapsack of White Privilege, conceived by Peggy McIntosh, discusses the many things a white person takes for granted, in list form. As a white person, many of these things were uncomfortable to read, but I also saw reflected in them the things that men, wealthy people, and non-disabled people take for granted.
I've decided to build an invisible crutch from things that constitute abled privilege, without repeating too much of what is in McIntosh's list (so read her list, and substitute "disability" for "color" for many of those things).
1. I can, if I wish, arrange to attend social events without worrying if they are accessible to me.
2. If I am in the company of people that make me uncomfortable, I can easily choose to move elsewhere.
3. I can easily find housing that is accessible to me, with no barriers to my mobility.
4. I can go shopping alone most of the time and be able to reach and obtain all of the items without assistance, know that cashiers will notice I am there, and can easily see and use the credit card machines.
5. I can turn on the television and see people of my ability level widely and accurately represented.
6. I can be pretty sure of my voice being heard in a group where I am the only person of my ability level represented--and they will make eye contact with me.
7. I can advocate for my children in their schools without my ability level being blamed for my children's performance or behavior.
8. I can do well in a challenging situation without being told what an inspiration I am.
9. If I ask to speak to someone "in charge", I can be relatively assured that the person will make eye contact with me and not treat me like I am stupid.
10. I can belong to an organization and not feel that others resent my membership because of my ability level.
11. I do not have to fear being preyed upon because of my ability level.
12. I can be reasonably assured that I won't be late for meetings due to mobility barriers.
13. I can use most cosmetics and personal care products without worrying that they will cause a painful or dangerous reaction.
14. I can usually go about in public without other people's personal care products causing me painful or dangerous reactions.
15. My neighborhood allows me to move about on sidewalks, into stores, and into friends' homes without difficulty.
16. People do not tell me that my ability level means I should not have children.
17. I can be reasonably sure that I will be able to make it to a regular job every day.
18. I know that my income can increase based on my performance, and I can seek new and better employment if I choose; I do not have to face a court battle to get an increase in my income.
19. My daily routine does not have to be carefully planned to accommodate medication or therapy schedules.
20. I can share my life with an animal companion without my ability to care for them being called into question due to my financial and ability situations.
21. If I am not feeling well, and decide to stay in bed, I will likely be believed and not told that I am lazy and worthless.
I am sure there are more that I haven't thought of. Do keep in mind that I've tried NOT to copy Ms. McIntosh's work, because there's no need--most of what she says definitely applies to this list as well.
Showing posts with label fibromyalgia. Show all posts
Showing posts with label fibromyalgia. Show all posts
Thursday, April 23, 2009
Wednesday, December 10, 2008
A short one
Ill people are not obligated to be brave, cheerful, or optimistic for the sake of preserving the feelings of well people.
Monday, September 15, 2008
Fibromyalgia is usually associated with "tender points", which are specific areas around the body that respond with an inordinate amount of pain when pressure is applied to them. Researchers are beginning to accept that these are not necessarily a good diagnostic criterion, and that the tender points appear to be areas that are particularly sensitive for all people; they are just more so for people with fibromyalgia, who experience a greater level of pain with less pressure than people without the condition.
Even so, since I started to become ill, my upper arms have become so tender that I can hardly bear to even have someone brush against them--and if more pressure than that is applied to them, it is agonizing beyond description. Blood pressure cuffs are torture devices to me, and tourniquets used for blood draws are even worse. I've had people playfully punch my arm, and then get indignant when I start to cry because it hurt so badly. "I didn't hit you THAT hard!" Most don't believe me when I explain that my arms are insanely sensitive, but they do tend to refrain from repeating the gesture when I explain that the pain is probably similar to getting hit in the testicles, and that, if they do it again to me, I'll be happy to demonstrate to them how badly it hurt me.
The arm-punching scenario happened often enough that I now have panic attacks sometimes if someone looks like they are going to touch my upper arm. Usually I move out of their reach, cross my arms, and place a hand on each upper arm for protection, then explain to them why I reacted that way. I've gotten pretty good at anticipating people, so I haven't been hurt in a while by a person, thank goodness.
But the rest of the world isn't foam padded. I'm sure my blood pressure readings (which are usually very good) are higher than what my normal state would be because of the pain, and the anticipation of the pain. Short sleeves with elastic gathers are abhorrent to me. Sometimes ANY fabric touching my arms is intolerable (I wear a lot of sleeveless shirts). I sometimes bump into objects or get jostled in a crowd. There are many days when they hurt and throb even if nothing at all is touching them. It feels like the whole surface of my upper arms are very nasty, very fresh bruises all the time. And when something DOES apply pressure to them, the pain lingers for a short period once the stimulus is gone.
I don't know what mechanism of my illness causes this excruciating arm pain. If I did, maybe I'd have some idea of how to lessen or even eliminate it. This is just one small aspect of the myriad symptoms I deal with on a daily basis, and I thought that elucidating upon this one aspect might give others some insight on just how difficult it can be to face this in addition to the crushing fatigue, widespread body pain, sensitivity to aural and visual stimuli, and all the other things that my brain fog keeps me from enumerating. Not all of them can be managed or reduced with treatment or drugs, and just being alive and conscious is a painful chore some days.
Even so, since I started to become ill, my upper arms have become so tender that I can hardly bear to even have someone brush against them--and if more pressure than that is applied to them, it is agonizing beyond description. Blood pressure cuffs are torture devices to me, and tourniquets used for blood draws are even worse. I've had people playfully punch my arm, and then get indignant when I start to cry because it hurt so badly. "I didn't hit you THAT hard!" Most don't believe me when I explain that my arms are insanely sensitive, but they do tend to refrain from repeating the gesture when I explain that the pain is probably similar to getting hit in the testicles, and that, if they do it again to me, I'll be happy to demonstrate to them how badly it hurt me.
The arm-punching scenario happened often enough that I now have panic attacks sometimes if someone looks like they are going to touch my upper arm. Usually I move out of their reach, cross my arms, and place a hand on each upper arm for protection, then explain to them why I reacted that way. I've gotten pretty good at anticipating people, so I haven't been hurt in a while by a person, thank goodness.
But the rest of the world isn't foam padded. I'm sure my blood pressure readings (which are usually very good) are higher than what my normal state would be because of the pain, and the anticipation of the pain. Short sleeves with elastic gathers are abhorrent to me. Sometimes ANY fabric touching my arms is intolerable (I wear a lot of sleeveless shirts). I sometimes bump into objects or get jostled in a crowd. There are many days when they hurt and throb even if nothing at all is touching them. It feels like the whole surface of my upper arms are very nasty, very fresh bruises all the time. And when something DOES apply pressure to them, the pain lingers for a short period once the stimulus is gone.
I don't know what mechanism of my illness causes this excruciating arm pain. If I did, maybe I'd have some idea of how to lessen or even eliminate it. This is just one small aspect of the myriad symptoms I deal with on a daily basis, and I thought that elucidating upon this one aspect might give others some insight on just how difficult it can be to face this in addition to the crushing fatigue, widespread body pain, sensitivity to aural and visual stimuli, and all the other things that my brain fog keeps me from enumerating. Not all of them can be managed or reduced with treatment or drugs, and just being alive and conscious is a painful chore some days.
Saturday, August 30, 2008
Just a quick one today
Telling someone with fibromyalgia that "everyone has aches and pains" is like telling a hemophiliac "everyone bleeds when they get a cut".
Thursday, August 28, 2008
A day in the life
Today, I had a booking for my small business. I awoke with my alarm, and took a pain pill, resetting my alarm for half an hour later, so I could get up once the pain medicine kicked in. Without it, I have a hard time getting up even to use the restroom, and I usually hold it as long as I can just to avoid the pain of getting up and going.
Half an hour after the first alarm, the second one goes off. I can get up now; it still hurts, but not as much. I pull the clothing I want out of my closet and dresser, but don't put them on right away; clothes are actually painful to me, and I'd rather get some other things done first (I bathe/shower at night, so that my hair will be dry by morning). Using hypoallergenic cosmetics, I put my face in order so I no longer look like a painting from Picasso's Blue Period. I pull on part of my clothing, and go downstairs to pack the rolling rubbermaid bin I need for my gig.
Using a written list, I make sure I haven't forgotten anything important; I've done this many times, but I still need to make sure the brain fog doesn't make me omit a key part of my repertoire. The bending and lifting I have to do for this is causing my lower back to protest, but I keep moving, grabbing a small bit of food on the way out.
I have to load the bin into my car, which I can do--I'm strong--but it hurts. My lower back feels like a knife has twisted in it, and it continues broadcasting pain signals even after I've settled into the driver's seat. Driving is a particular nuisance; the use of my body in this way often gives me leg cramps, a spasming back, neck pain, and a headache. Fortunately, my drive today is less than five minutes, and I arrive at my destination no worse for the drive, for once.
I haul the bin out of the car, along with a couple of bags that had been on the front seat. I try to pick up the bin's handle, but my purse is on that shoulder, and it slides down. Stupidly, I slide my purse back up and try to pick up the handle again, repeating this three or four times before my logic circuits burn through the brain fog and tell me to put the purse on the OTHER shoulder.
Once at my gig, I set up quickly, then use my spare time to read the novel I'd brought along. The time comes, and I perform well, as usual. This is the easy part for me; it comes naturally and easily. After I'm done, I receive applause, and many audience members come up afterwards to personally thank me, and to tell me how much they enjoyed it. I accept their compliments graciously, and then thank them for being there.
I leave some literature with the person who organizes events for that client, then pack up and haul the bin back out to my car. It feels heavier than it was before, even though it's technically lost some mass. My back can't take much more than this, and when I get home, I feel my abdominal muscles giving way this time as I lift the bin back up to the porch. I'm still not done, though; I have to get its contents put away--it's not a task that can be left until later. More bending, kneeling, lifting, and it's done. And so am I.
Half an hour after the first alarm, the second one goes off. I can get up now; it still hurts, but not as much. I pull the clothing I want out of my closet and dresser, but don't put them on right away; clothes are actually painful to me, and I'd rather get some other things done first (I bathe/shower at night, so that my hair will be dry by morning). Using hypoallergenic cosmetics, I put my face in order so I no longer look like a painting from Picasso's Blue Period. I pull on part of my clothing, and go downstairs to pack the rolling rubbermaid bin I need for my gig.
Using a written list, I make sure I haven't forgotten anything important; I've done this many times, but I still need to make sure the brain fog doesn't make me omit a key part of my repertoire. The bending and lifting I have to do for this is causing my lower back to protest, but I keep moving, grabbing a small bit of food on the way out.
I have to load the bin into my car, which I can do--I'm strong--but it hurts. My lower back feels like a knife has twisted in it, and it continues broadcasting pain signals even after I've settled into the driver's seat. Driving is a particular nuisance; the use of my body in this way often gives me leg cramps, a spasming back, neck pain, and a headache. Fortunately, my drive today is less than five minutes, and I arrive at my destination no worse for the drive, for once.
I haul the bin out of the car, along with a couple of bags that had been on the front seat. I try to pick up the bin's handle, but my purse is on that shoulder, and it slides down. Stupidly, I slide my purse back up and try to pick up the handle again, repeating this three or four times before my logic circuits burn through the brain fog and tell me to put the purse on the OTHER shoulder.
Once at my gig, I set up quickly, then use my spare time to read the novel I'd brought along. The time comes, and I perform well, as usual. This is the easy part for me; it comes naturally and easily. After I'm done, I receive applause, and many audience members come up afterwards to personally thank me, and to tell me how much they enjoyed it. I accept their compliments graciously, and then thank them for being there.
I leave some literature with the person who organizes events for that client, then pack up and haul the bin back out to my car. It feels heavier than it was before, even though it's technically lost some mass. My back can't take much more than this, and when I get home, I feel my abdominal muscles giving way this time as I lift the bin back up to the porch. I'm still not done, though; I have to get its contents put away--it's not a task that can be left until later. More bending, kneeling, lifting, and it's done. And so am I.
Monday, August 25, 2008
How are you? Don't ask!
My aunt, who is only two years older than I am, has been undergoing chemotherapy and radiation treatments for an inoperable brain tumor. The treatments are not going to be life-saving; they will, however, lengthen her remaining time and stave off the loss of function for a while. Of course, the treatment has the expected side effects of feeling really sick, hair loss, etcetera.
When the family was informed of her diagnosis, I made the decision to start writing her letters--real, handwritten letters, sent through the mail, which to me are so much more personal and dear than email. I wanted to make sure I said all the things that I wanted to say, but, more importantly, I wanted to give her something to enjoy and look forward to. She knows that I know she's ill, and that she's suffering, and all that, so I ignored those topics altogether, instead focusing in my first few letters on the things I admired about her.
After I had gotten the "have to say this" stuff out of my system, I then focused my writings on good things that were happening here in my world. We both love animals, so I wrote about my foster cats, my own cats, my reptiles, and some of the volunteer work I was doing. I wrote about my garden as spring arrived. I told silly stories about my husband and roommate. I shared experiences with favorite restaurants and recipes, talked about art museum visits, and whatever else was going on that was positive. I made sure to tell her that I was perfectly okay with her not responding, that I figured she would want to spend the bulk of her energy on enjoying her family.
At some point, my mother had a chance to talk to her at a family gathering, and she told my mother that she was really enjoying my letters, especially because they focused on the positive things. So I kept writing, and at some point, I called her to answer a question she'd had about a bird. She commented on how irritating it was that people kept asking her how she was feeling. I told her I absolutely understood--that even though my condition is not as serious as hers, it still makes me feel like crap all the time, and so I never know whether to answer the question, "How are you feeling?" with honesty or not. I'd rather not talk about how I'm feeling, because it's always bad, and if you are always answering honestly in that way, people start to get annoyed with me for never feeling good.
So what should you say to a person who is ill, in lieu of "How are you feeling"? Train yourself to ask a different question. Ask if they've seen any good movies lately, read any good books, that kind of thing. Whatever common ground you've had with them before? Now's the time to draw upon it and talk about those topics. And, if the person is actually wanting to discuss their illness, let them guide you to that topic. I know that I sometimes do want to talk about mine, if only to share experiences that might be helpful to others, or when I need a little support, but a most of the time, if I have the energy for socializing, I'd just rather focus on other things, and I'm grateful to folks who allow me to do that.
When the family was informed of her diagnosis, I made the decision to start writing her letters--real, handwritten letters, sent through the mail, which to me are so much more personal and dear than email. I wanted to make sure I said all the things that I wanted to say, but, more importantly, I wanted to give her something to enjoy and look forward to. She knows that I know she's ill, and that she's suffering, and all that, so I ignored those topics altogether, instead focusing in my first few letters on the things I admired about her.
After I had gotten the "have to say this" stuff out of my system, I then focused my writings on good things that were happening here in my world. We both love animals, so I wrote about my foster cats, my own cats, my reptiles, and some of the volunteer work I was doing. I wrote about my garden as spring arrived. I told silly stories about my husband and roommate. I shared experiences with favorite restaurants and recipes, talked about art museum visits, and whatever else was going on that was positive. I made sure to tell her that I was perfectly okay with her not responding, that I figured she would want to spend the bulk of her energy on enjoying her family.
At some point, my mother had a chance to talk to her at a family gathering, and she told my mother that she was really enjoying my letters, especially because they focused on the positive things. So I kept writing, and at some point, I called her to answer a question she'd had about a bird. She commented on how irritating it was that people kept asking her how she was feeling. I told her I absolutely understood--that even though my condition is not as serious as hers, it still makes me feel like crap all the time, and so I never know whether to answer the question, "How are you feeling?" with honesty or not. I'd rather not talk about how I'm feeling, because it's always bad, and if you are always answering honestly in that way, people start to get annoyed with me for never feeling good.
So what should you say to a person who is ill, in lieu of "How are you feeling"? Train yourself to ask a different question. Ask if they've seen any good movies lately, read any good books, that kind of thing. Whatever common ground you've had with them before? Now's the time to draw upon it and talk about those topics. And, if the person is actually wanting to discuss their illness, let them guide you to that topic. I know that I sometimes do want to talk about mine, if only to share experiences that might be helpful to others, or when I need a little support, but a most of the time, if I have the energy for socializing, I'd just rather focus on other things, and I'm grateful to folks who allow me to do that.
Wednesday, June 25, 2008
The Blue Jay and the Box Turtle
In a forest by a river, a blue jay and a box turtle met and became friends. The blue jay could look around from the treetops and report on any gossip in the area, while the box turtle had a good sense of smell and strong front legs and claws to dig up choice morsels to share with the blue jay.
Because the box turtle sometimes needed to get the blue jay's attention when the jay was high up in a tree, they developed a semaphore system so that they could ask simple, short questions without either of them having to leave their immediate location. The box turtle used this system more frequently, because the blue jay could simply fly down to wherever the turtle was to talk.
Well, one day, the blue jay gets a question flashed at him from the turtle. He wasn't at the treetop; he was on a lower branch, so he begins to berate the turtle. "I hate it when you use the semaphores when I'm not at the top of the tree!"
The turtle was very confused by this. "What did you want me to do, scream from down here? I thought that would be less polite than using the signals."
The jay hopped angrily from one foot to another, fluffing out his feathers self-importantly. "I am really tired of using the semaphores. If you need to talk to me, the least you could do is come up and speak to me in person!"
If the turtle had eyebrows, one would have been raised at that moment. "How do you expect me to do that, exactly? You do realize that I am a BOX TURTLE, and therefore I do not have wings? And I can't climb like a fox or bear!"
"Well I don't know. I am just sick and tired of using those semaphores!" The bluejay fluttered off in a squawking huff, shitting as he went to express his displeasure.
The turtle sat at the bottom of the tree, aggravated, and muttered, "Why should I dig up grubs for him, if he's just going to be like that?"
"Hey hey whatcha doin?!" said a chirpy voice. Box turtle looked up to see a dear treefrog friend, who had just awakened as the sun was setting. The little gray frog blended perfectly with the bark of the tree, but hopped around, eyeing the air for flying insects.
"Hey, frog. Blue jay's been kind of a jerk to me today."
"Yeah? HEY LOOK A LACEWING!" The frog flicked out his tongue and swallowed a bright yellow insect. "Tangy!"
"Yeah, he thinks that, if I want to talk to him, I should come up into the tree instead of using semaphores."
"I don't really deal with those semaphore things; they aren't too visible at night," the frog replied, snatching a silent-winged moth with lightning speed. "So I can understand how he feels."
"Er, right, but we are using them during the day, so that isn't really a problem," the turtle said, sniffing at the ground and digging up a fat earthworm. "I'm not too hungry, you want this?"
"Ohhh!" The frog slurped it down voraciously, stuffing the worm into his mouth with his forelegs. "I guess that makes sense; when females communicate with us, they don't use voices, which makes it hard--only our males can talk."
"Yeah, that is a totally different situation. He seems to think I can just climb right up into the tree and talk to him instead."
"Well, it is not fair for him to expect you to climb all the way up there, but can't you just meet him halfway? That's what I'd do." The frog clambered over the tree's trunk, snatching up ants and eating them like popcorn. "Not as tangy as lacewings, but close! That formic acid is delish."
"Halfway? You're a treefrog, you CAN meet him halfway. I'm a turtle. I don't have wings. I don't have sticky toe pads. I don't have agile limbs like a fox."
"Right, but don't you think that you'd eventually be able to do it if you practiced?"
"How is practice going to change the very nature of what I am?"
"I don't know. I'm sure there has to be a way to work it out. I gotta go, I hear a bunch of flies across that glen; I bet they're chewing on something delicious and dead! Bye!" The frog hopped onto the turtle's shell for a quick hug, and bounced away.
The box turtle withdrew into her shell and tightly closed it up, annoyed with the entire world. A couple of hours later, she felt something nudge her. Cautiously peeking out, she saw her best friend in the world, a handsome fox, with flowing tail, wide grin, and crafty eyes. "You okay, turtle?" he asked.
"No, Blue Jay is making me really mad." She told the fox her experience with blue jay, and what the treefrog had said. He licked her nose sympathetically.
"I know I can climb trees, but I also know that some cannot climb trees. By the way, there is some really tasty looking fruit up that tree over there. You want me to climb up and get you some?"
The turtle nearly cried with relief at having someone as understanding as the fox. "Yes. And next time you see Blue Jay, would you eat him for me?"
The fox laughed. "I'll see what I can do. For now, why don't you dig up some worms for us, and I'll go get that fruit, and then we can take a nap together.
"That would be great, Fox. I am so lucky to have a friend like you."
Because the box turtle sometimes needed to get the blue jay's attention when the jay was high up in a tree, they developed a semaphore system so that they could ask simple, short questions without either of them having to leave their immediate location. The box turtle used this system more frequently, because the blue jay could simply fly down to wherever the turtle was to talk.
Well, one day, the blue jay gets a question flashed at him from the turtle. He wasn't at the treetop; he was on a lower branch, so he begins to berate the turtle. "I hate it when you use the semaphores when I'm not at the top of the tree!"
The turtle was very confused by this. "What did you want me to do, scream from down here? I thought that would be less polite than using the signals."
The jay hopped angrily from one foot to another, fluffing out his feathers self-importantly. "I am really tired of using the semaphores. If you need to talk to me, the least you could do is come up and speak to me in person!"
If the turtle had eyebrows, one would have been raised at that moment. "How do you expect me to do that, exactly? You do realize that I am a BOX TURTLE, and therefore I do not have wings? And I can't climb like a fox or bear!"
"Well I don't know. I am just sick and tired of using those semaphores!" The bluejay fluttered off in a squawking huff, shitting as he went to express his displeasure.
The turtle sat at the bottom of the tree, aggravated, and muttered, "Why should I dig up grubs for him, if he's just going to be like that?"
"Hey hey whatcha doin?!" said a chirpy voice. Box turtle looked up to see a dear treefrog friend, who had just awakened as the sun was setting. The little gray frog blended perfectly with the bark of the tree, but hopped around, eyeing the air for flying insects.
"Hey, frog. Blue jay's been kind of a jerk to me today."
"Yeah? HEY LOOK A LACEWING!" The frog flicked out his tongue and swallowed a bright yellow insect. "Tangy!"
"Yeah, he thinks that, if I want to talk to him, I should come up into the tree instead of using semaphores."
"I don't really deal with those semaphore things; they aren't too visible at night," the frog replied, snatching a silent-winged moth with lightning speed. "So I can understand how he feels."
"Er, right, but we are using them during the day, so that isn't really a problem," the turtle said, sniffing at the ground and digging up a fat earthworm. "I'm not too hungry, you want this?"
"Ohhh!" The frog slurped it down voraciously, stuffing the worm into his mouth with his forelegs. "I guess that makes sense; when females communicate with us, they don't use voices, which makes it hard--only our males can talk."
"Yeah, that is a totally different situation. He seems to think I can just climb right up into the tree and talk to him instead."
"Well, it is not fair for him to expect you to climb all the way up there, but can't you just meet him halfway? That's what I'd do." The frog clambered over the tree's trunk, snatching up ants and eating them like popcorn. "Not as tangy as lacewings, but close! That formic acid is delish."
"Halfway? You're a treefrog, you CAN meet him halfway. I'm a turtle. I don't have wings. I don't have sticky toe pads. I don't have agile limbs like a fox."
"Right, but don't you think that you'd eventually be able to do it if you practiced?"
"How is practice going to change the very nature of what I am?"
"I don't know. I'm sure there has to be a way to work it out. I gotta go, I hear a bunch of flies across that glen; I bet they're chewing on something delicious and dead! Bye!" The frog hopped onto the turtle's shell for a quick hug, and bounced away.
The box turtle withdrew into her shell and tightly closed it up, annoyed with the entire world. A couple of hours later, she felt something nudge her. Cautiously peeking out, she saw her best friend in the world, a handsome fox, with flowing tail, wide grin, and crafty eyes. "You okay, turtle?" he asked.
"No, Blue Jay is making me really mad." She told the fox her experience with blue jay, and what the treefrog had said. He licked her nose sympathetically.
"I know I can climb trees, but I also know that some cannot climb trees. By the way, there is some really tasty looking fruit up that tree over there. You want me to climb up and get you some?"
The turtle nearly cried with relief at having someone as understanding as the fox. "Yes. And next time you see Blue Jay, would you eat him for me?"
The fox laughed. "I'll see what I can do. For now, why don't you dig up some worms for us, and I'll go get that fruit, and then we can take a nap together.
"That would be great, Fox. I am so lucky to have a friend like you."
Friday, May 30, 2008
Fat is a symptom, not a disease, Part Two: Hypothyroidism
About five years ago, I started developing severe symptoms consistent with hypothyroidism: crushing fatigue, widespread pain, weight gain, and other issues. I'd had them to some degree for several years before that, but for the first time in my life, the symptoms were interfering with my ability to work.
My doctor at the time, we'll call him Dr. H, did blood tests, and he told me that my thyroid levels were "normal". With every other thing ruled out, and some other things ruled in, he finally concluded that I had fibromyalgia, and got me started on some medications that were supposed to help. These medications helped the pain and depression somewhat, but I was still exhausted most of the time.
A few months later, I asked him to do another thyroid test. He told me that it was a good idea, since the standards for "normal" had been changed, and that my previous test, while "normal" at the time, now was outside of that range. The phlebotomist took a few vials, and I heard back a couple of weeks later that my levels were "normal". Now, at the time, I had not done my homework. I was still not fully aware of the extent to which I had to advocate for myself with doctors. Too trusting and naive, I didn't actually get told what the numerical results of my test were, only that they were fine.
Fast forward to a year ago, when I changed my primary doctor to someone I'd met through work, a very intelligent man who was very knowledgeable about hypothyroidism and fibromyalgia. Dr. D was of the opinion that, even if the test results appear to be normal, when a patient exhibits symptoms of hypothyroidism, it may be beneficial to treat for it anyway. He said that about half of the people in such circumstances show improvement with the thyroid medication.
Additionally, my previous doctor only tested for TSH, the chemical your brain sends to your thyroid to tell it to make the thyroid hormone. Basically, if you aren't making enough thyroid hormone, the pituitary gland keeps pumping out TSH, which reaches a high level because it's the equivalent of the pituitary gland screaming at the thyroid to step up production. So a high level of TSH will show that the thyroid's not responding enough to shut up the pituitary gland. In my opinion, that's a bit like determining if someone is deaf by whether or not their spouse is screaming at them to be heard. Maybe you can draw some conclusions from it, but it doesn't necessarily mean anything if the spouse isn't shouting.
In many people, the TSH test will not show hypothyroidism; people with fibro especially seem to be harder to test because of a biochemical feedback loop (and no, I don't know where my source for this is; I had it in a newsletter or something) that results in a normal-appearing TSH level. So, to see if there's enough thyroid hormone being produced, the most accurate way is (and don't be shocked here) to test for the actual level of thyroid hormone. Now, to me, that seems kind of common-sensical, but I guess it's more expensive to do the full testing.
The long and short of it is that, once Dr. D did the full panel of tests, it showed that I was, in fact, not producing enough thyroid hormone. He had already started me on the medication, however, preferring to begin treatment immediately instead of waiting. It can take a long time to get up to the proper dose, because you start very small and work upward toward the dose that works for you, so he didn't want to make me suffer any longer than necessary.
It has only been in the past couple of months that I've finally been up to the right amount of medication. My energy levels have noticeably increased--I can actually feel that my metabolism has revved up a bit. I feel cheated, though--I could have been feeling like this four years ago if my last doctor had been doing his job and using his brain. I don't know how much the years of hypothyroidism have actually damaged my body, and if I'm going to recover somewhat from that, it could take a very long time.
Left unchecked, hypothyroidism can damage the heart, kidneys, and mental state, and can cause osteoporosis and anemia, among many other problems. Because of the metabolic effects, it causes weight gain, and makes weight loss, even through intense dieting and exercise, nearly impossible. Hypothyroidism is NOT difficult to test for--and is fairly simple and inexpensive to treat. As such, there is NO excuse for anyone with the condition to remain untested and untreated; anyone exhibiting symptoms should be taken seriously by a doctor, instead of being treated like they are not worthy of medical assistance until they lose weight.
Educate yourself on the symptoms, and don't accept no for an answer if a doctor doesn't want to do the tests. Make sure you know what tests are being run, and if they aren't the full panel, ask why--insist that it be done. Don't accept a qualitative answer like "normal"--get numbers, and compare them to the latest medical literature. If your literature shows a result different from your doctor's qualitative answer (outside the normal range, when the doctor's said you're normal), find out why your doctor's opinion is different. If you find that you're not getting straight answers or considerate treatment, get another doctor. Remember, it's YOUR body, YOU have to live in it. It does not belong to your doctor, and you don't have to accept your doctor's word as gospel.
I sincerely hope that my experience can help others get the treatment they need.
My doctor at the time, we'll call him Dr. H, did blood tests, and he told me that my thyroid levels were "normal". With every other thing ruled out, and some other things ruled in, he finally concluded that I had fibromyalgia, and got me started on some medications that were supposed to help. These medications helped the pain and depression somewhat, but I was still exhausted most of the time.
A few months later, I asked him to do another thyroid test. He told me that it was a good idea, since the standards for "normal" had been changed, and that my previous test, while "normal" at the time, now was outside of that range. The phlebotomist took a few vials, and I heard back a couple of weeks later that my levels were "normal". Now, at the time, I had not done my homework. I was still not fully aware of the extent to which I had to advocate for myself with doctors. Too trusting and naive, I didn't actually get told what the numerical results of my test were, only that they were fine.
Fast forward to a year ago, when I changed my primary doctor to someone I'd met through work, a very intelligent man who was very knowledgeable about hypothyroidism and fibromyalgia. Dr. D was of the opinion that, even if the test results appear to be normal, when a patient exhibits symptoms of hypothyroidism, it may be beneficial to treat for it anyway. He said that about half of the people in such circumstances show improvement with the thyroid medication.
Additionally, my previous doctor only tested for TSH, the chemical your brain sends to your thyroid to tell it to make the thyroid hormone. Basically, if you aren't making enough thyroid hormone, the pituitary gland keeps pumping out TSH, which reaches a high level because it's the equivalent of the pituitary gland screaming at the thyroid to step up production. So a high level of TSH will show that the thyroid's not responding enough to shut up the pituitary gland. In my opinion, that's a bit like determining if someone is deaf by whether or not their spouse is screaming at them to be heard. Maybe you can draw some conclusions from it, but it doesn't necessarily mean anything if the spouse isn't shouting.
In many people, the TSH test will not show hypothyroidism; people with fibro especially seem to be harder to test because of a biochemical feedback loop (and no, I don't know where my source for this is; I had it in a newsletter or something) that results in a normal-appearing TSH level. So, to see if there's enough thyroid hormone being produced, the most accurate way is (and don't be shocked here) to test for the actual level of thyroid hormone. Now, to me, that seems kind of common-sensical, but I guess it's more expensive to do the full testing.
The long and short of it is that, once Dr. D did the full panel of tests, it showed that I was, in fact, not producing enough thyroid hormone. He had already started me on the medication, however, preferring to begin treatment immediately instead of waiting. It can take a long time to get up to the proper dose, because you start very small and work upward toward the dose that works for you, so he didn't want to make me suffer any longer than necessary.
It has only been in the past couple of months that I've finally been up to the right amount of medication. My energy levels have noticeably increased--I can actually feel that my metabolism has revved up a bit. I feel cheated, though--I could have been feeling like this four years ago if my last doctor had been doing his job and using his brain. I don't know how much the years of hypothyroidism have actually damaged my body, and if I'm going to recover somewhat from that, it could take a very long time.
Left unchecked, hypothyroidism can damage the heart, kidneys, and mental state, and can cause osteoporosis and anemia, among many other problems. Because of the metabolic effects, it causes weight gain, and makes weight loss, even through intense dieting and exercise, nearly impossible. Hypothyroidism is NOT difficult to test for--and is fairly simple and inexpensive to treat. As such, there is NO excuse for anyone with the condition to remain untested and untreated; anyone exhibiting symptoms should be taken seriously by a doctor, instead of being treated like they are not worthy of medical assistance until they lose weight.
Educate yourself on the symptoms, and don't accept no for an answer if a doctor doesn't want to do the tests. Make sure you know what tests are being run, and if they aren't the full panel, ask why--insist that it be done. Don't accept a qualitative answer like "normal"--get numbers, and compare them to the latest medical literature. If your literature shows a result different from your doctor's qualitative answer (outside the normal range, when the doctor's said you're normal), find out why your doctor's opinion is different. If you find that you're not getting straight answers or considerate treatment, get another doctor. Remember, it's YOUR body, YOU have to live in it. It does not belong to your doctor, and you don't have to accept your doctor's word as gospel.
I sincerely hope that my experience can help others get the treatment they need.
Wednesday, February 27, 2008
Open Letter To Those New To The World of Chronic Pain
Dear New Chronic Pain Sufferers,
Welcome to the world of chronic pain, a dark place where you may or may not get a definitive diagnosis or find treatment that helps.
I want you to know, first of all, that you are not alone. There are lots of us out there who have gone before you into this realm, who have been in it for years, and who have done our best to pave the way to make it easier for you. As you may be discovering, we have not made as much headway as we'd like. This is a difficult road, one where we have only just begun to be taken seriously, to have research done, and to have some therapies that work for some of us.
We still have a lot of lousy doctors out there who are either not well-educated, or not compassionate. Most of us have been through several doctors, usually around 7 or 8, before finding one that is willing and able to help us. You may have to do the same thing, and while that is a huge pain in the butt, it is not worth your time to continue seeing someone who treats you poorly, doesn't take you seriously, or doesn't know what the hell s/he is doing. If your doctor is unable to help, and unwilling to learn more about your condition, then find a new one. If that one fails you, move on to the next one. Remember, you are not there to be a good, passive little patient. You have to advocate for yourself, and if the doctor expects you to just suck it up and do what s/he says? S/he does not deserve your time or money.
There's also an immense amount of quackery out there. Look out for doctors who promote snake oil or weird therapies. Especially look out for claims of a "cure"--that's the clearest indicator of bullshit. Guaifenesin, for example, works no better than placebo, yet there's a doctor out there making tons of money off of fibromyalgia patients with his quacky book that claims to cure the condition with guaifenesin. Look out for vitamin pushers; a multivitamin isn't a bad thing to take, but don't throw your money away on one that claims to be designed for your condition. Avoid magnetic products; they are quackery as well. Your best bet is to find a good online forum and communicate with other sufferers. Most veterans can tell you what works and what doesn't, which is very helpful in a realm where hucksters prey upon our desperation to make the pain stop.
Also know that everyone has a different set of symptoms, and different therapies work for some, but not others. It's important to have a lot of tests done, including Vitamin D levels, thyroid panel (full panel, not just TSH), Lupus and Rheumatoid Arthritis screening, and things like that. Rule out everything you can, and treat what you test positive for. Some people find that their pain is caused by celiac disease, and is helped by going gluten free. We all have to go through periods of trial and error to see what works and what doesn't. For example, many people get relief from Ultram, but it does absolutely nothing for me. I get relief from opiate pain medication, but that doesn't work for everyone. It takes a lot of time and effort to find the right diagnoses and therapies. You also will have to advocate for yourself a LOT, asking the doctor to let you try this or that, and if they refuse to listen, time to fire them and find someone who wants to help you.
Your family and friends are probably going to treat you badly over this. They may accuse you of being lazy, tell you that you just need to lose weight (chronic pain afflicts people of all body types), to suck it up, or that you're imagining it. They'll offer tons of unsolicited advice, and probably even get mad at you for not paying $100/month for a random herb that they read about in Reader's Digest. You do not deserve to be treated this way, and you do NOT have to apologize for your pain. You might just have to let go of some people, if they cannot get over your life change. You don't have to yell at them, but feel free to tell them that you are dealing with your condition, and it is between you and your doctor what therapies you try. If they can't handle that, then do your best to ignore them when they are behaving badly.
Finally, don't give up. Your pain is real. There is research showing the biochemical differences between us and normal people, and more going on even now. Therapies are being developed and improved every day. Keep a journal, either online or paper, and make it private. Write about your pain, your experiences, and what works for you. The information may help you or someone else someday. Network online with other people and share your experiences in communities; you will learn valuable stuff this way. Find a source of comfort, be it a spouse, friend, support group, cat, or dog; you need someone to hug you and be hugged by you. Finally, remember that you are not a bad person, and you don't deserve this. It's just a bad thing that happened to you, and, while it seriously sucks, there are more of us out here to help you find your way.
Welcome to chronic pain.
Love,
Rio
Welcome to the world of chronic pain, a dark place where you may or may not get a definitive diagnosis or find treatment that helps.
I want you to know, first of all, that you are not alone. There are lots of us out there who have gone before you into this realm, who have been in it for years, and who have done our best to pave the way to make it easier for you. As you may be discovering, we have not made as much headway as we'd like. This is a difficult road, one where we have only just begun to be taken seriously, to have research done, and to have some therapies that work for some of us.
We still have a lot of lousy doctors out there who are either not well-educated, or not compassionate. Most of us have been through several doctors, usually around 7 or 8, before finding one that is willing and able to help us. You may have to do the same thing, and while that is a huge pain in the butt, it is not worth your time to continue seeing someone who treats you poorly, doesn't take you seriously, or doesn't know what the hell s/he is doing. If your doctor is unable to help, and unwilling to learn more about your condition, then find a new one. If that one fails you, move on to the next one. Remember, you are not there to be a good, passive little patient. You have to advocate for yourself, and if the doctor expects you to just suck it up and do what s/he says? S/he does not deserve your time or money.
There's also an immense amount of quackery out there. Look out for doctors who promote snake oil or weird therapies. Especially look out for claims of a "cure"--that's the clearest indicator of bullshit. Guaifenesin, for example, works no better than placebo, yet there's a doctor out there making tons of money off of fibromyalgia patients with his quacky book that claims to cure the condition with guaifenesin. Look out for vitamin pushers; a multivitamin isn't a bad thing to take, but don't throw your money away on one that claims to be designed for your condition. Avoid magnetic products; they are quackery as well. Your best bet is to find a good online forum and communicate with other sufferers. Most veterans can tell you what works and what doesn't, which is very helpful in a realm where hucksters prey upon our desperation to make the pain stop.
Also know that everyone has a different set of symptoms, and different therapies work for some, but not others. It's important to have a lot of tests done, including Vitamin D levels, thyroid panel (full panel, not just TSH), Lupus and Rheumatoid Arthritis screening, and things like that. Rule out everything you can, and treat what you test positive for. Some people find that their pain is caused by celiac disease, and is helped by going gluten free. We all have to go through periods of trial and error to see what works and what doesn't. For example, many people get relief from Ultram, but it does absolutely nothing for me. I get relief from opiate pain medication, but that doesn't work for everyone. It takes a lot of time and effort to find the right diagnoses and therapies. You also will have to advocate for yourself a LOT, asking the doctor to let you try this or that, and if they refuse to listen, time to fire them and find someone who wants to help you.
Your family and friends are probably going to treat you badly over this. They may accuse you of being lazy, tell you that you just need to lose weight (chronic pain afflicts people of all body types), to suck it up, or that you're imagining it. They'll offer tons of unsolicited advice, and probably even get mad at you for not paying $100/month for a random herb that they read about in Reader's Digest. You do not deserve to be treated this way, and you do NOT have to apologize for your pain. You might just have to let go of some people, if they cannot get over your life change. You don't have to yell at them, but feel free to tell them that you are dealing with your condition, and it is between you and your doctor what therapies you try. If they can't handle that, then do your best to ignore them when they are behaving badly.
Finally, don't give up. Your pain is real. There is research showing the biochemical differences between us and normal people, and more going on even now. Therapies are being developed and improved every day. Keep a journal, either online or paper, and make it private. Write about your pain, your experiences, and what works for you. The information may help you or someone else someday. Network online with other people and share your experiences in communities; you will learn valuable stuff this way. Find a source of comfort, be it a spouse, friend, support group, cat, or dog; you need someone to hug you and be hugged by you. Finally, remember that you are not a bad person, and you don't deserve this. It's just a bad thing that happened to you, and, while it seriously sucks, there are more of us out here to help you find your way.
Welcome to chronic pain.
Love,
Rio
Saturday, February 16, 2008
Fibromyalgia and the variability of its sufferers
From my Livejournal friend Liz (ma_petite7263):
Liz captured something that's been rattling around in my subconscious very eloquently. Many of us who are chronically ill are beset by people who "know someone who got better after they did x", and we get treated like recalcitrant children for stubbornly refusing to magically get better just because our problems are inconvenient for others.
I know that it's probably frustrating to view a fibromyalgia sufferer from the outside. Here's this person who looks okay, and they can't be plugged into a machine that will give a precise measure of illness, yet they are always saying they are in pain, and that they are tired. To some, it might appear to be an excuse to slack off, to be lazy.
Let me tell you something: Nothing could be further from the truth. I would love nothing more than to be working sixty hour weeks, keeping my house really clean, and being able to have a normal social life. Why am I not getting better? Because medical science hasn't found a cure for this. No one knows how to fix it--and we're just barely learning how to manage the symptoms decently. Some people are lucky and found a simple solution, but the rest of us are waiting for science to catch up with our suffering. We've only recently even been able to find medical professionals to take us seriously enough to give us decent quality of life; many of Dr. Kevorkian's clients were fibromyalgia sufferers.
So, look, maybe it's not convenient for you to have a friend or family member with this condition, but something that pushes many of its sufferers to commit suicide rather than continue a life of relentless pain and fatigue? Not something we chose, wanted, or enjoy. If you think it's so awful to deal with us, just be glad you aren't one of us instead.
Something got me started thinking about pain and illness and how individuals deal with it in their own lives.
Some people are able to move past it, live with the pain and not let it affect them at all. It doesn't change their lives. They don't have to give up anything or struggle.
Some people have to make small changes.
Some people have to make big changes.
Some people are completely disabled by it.
Regardless of where any of us lie on the continuum, none of us should be treated as if we all fall in the first category. We'd all like to be there, but a lot of us aren't, and we should be made to feel like lesser beings just because we have to make adjustments.
I think this goes hand-in-hand with the concept of invisible disabilities. Because we have no outward signs of being ill, others automatically assume we're making it up. Then they lump us together and say that "So-and-so does just fine with illness X" or "Whosmadoodle bathes in the blood of infant platypi and now they're doing great!" as if we're all the same person, with the same illness, with the same symptoms, with the same abilities and pain thresholds and mental states.
What people don't seem to understand is that we're all different. A lot of us with chronic illnesses also suffer from mental illness, primarily depression. You'd be depressed, too, if you woke up in pain everyday or felt like your body was just giving out on you. You'd be depressed, too, if you knew there was no cure, and the things you can do to alleviate symptoms don't work for everyone. You may be one of the unlucky few that is on an eternal fruitless search for relief.
I know there are people out there who have more debilitating diseases like MS and lupus, or spina bifida, or had to have a tumor removed from their brain. More power to them if they've been able to take it in stride and not let it affect them. But just because they can do it doesn't mean we all can.
The ones who seem to hold this belief the firmest are those who haven't been afflicted. The perfectly healthy can blather on as much as they'd like but it comes down to the fact that they have no clue what they're saying.
Liz captured something that's been rattling around in my subconscious very eloquently. Many of us who are chronically ill are beset by people who "know someone who got better after they did x", and we get treated like recalcitrant children for stubbornly refusing to magically get better just because our problems are inconvenient for others.
I know that it's probably frustrating to view a fibromyalgia sufferer from the outside. Here's this person who looks okay, and they can't be plugged into a machine that will give a precise measure of illness, yet they are always saying they are in pain, and that they are tired. To some, it might appear to be an excuse to slack off, to be lazy.
Let me tell you something: Nothing could be further from the truth. I would love nothing more than to be working sixty hour weeks, keeping my house really clean, and being able to have a normal social life. Why am I not getting better? Because medical science hasn't found a cure for this. No one knows how to fix it--and we're just barely learning how to manage the symptoms decently. Some people are lucky and found a simple solution, but the rest of us are waiting for science to catch up with our suffering. We've only recently even been able to find medical professionals to take us seriously enough to give us decent quality of life; many of Dr. Kevorkian's clients were fibromyalgia sufferers.
So, look, maybe it's not convenient for you to have a friend or family member with this condition, but something that pushes many of its sufferers to commit suicide rather than continue a life of relentless pain and fatigue? Not something we chose, wanted, or enjoy. If you think it's so awful to deal with us, just be glad you aren't one of us instead.
Wednesday, January 30, 2008
Brief update
I haven't abandoned y'all; I have just not been feeling great. Fibro fog and pain have my sleep schedule flipped, and my wellspring of inspiration is running dry because of the mental static.
Yesterday, I found myself in full-body agony, and I was so discombobulated by it that I actually forgot to take pain medication for it. I finally remembered when the spouse and I were already on our way to our friends' house, which made for an interesting evening.
Once we got home, I managed to remember the pill, and soaked in a hot bath. What I discovered was that the main source of my agony was my right leg and lower back; they hurting so badly that they just radiated waves of pain through my entire being. Once I'd fought back a little, and figured out the source, I was able to have my husband massage out some of it. I occasionally get a cramp that extends from big toe to coccyx, and it thwacks the hip, knee, and ankle on its way up and down. I often ask to be shot while enduring one of these. Putting on a light compression stocking does help (18-20 mmHg), but time is generally the only thing that fixes it completely.
So that's what I've been up to. I also have a new foster kitten, but he will be in a whole new post about him!
Yesterday, I found myself in full-body agony, and I was so discombobulated by it that I actually forgot to take pain medication for it. I finally remembered when the spouse and I were already on our way to our friends' house, which made for an interesting evening.
Once we got home, I managed to remember the pill, and soaked in a hot bath. What I discovered was that the main source of my agony was my right leg and lower back; they hurting so badly that they just radiated waves of pain through my entire being. Once I'd fought back a little, and figured out the source, I was able to have my husband massage out some of it. I occasionally get a cramp that extends from big toe to coccyx, and it thwacks the hip, knee, and ankle on its way up and down. I often ask to be shot while enduring one of these. Putting on a light compression stocking does help (18-20 mmHg), but time is generally the only thing that fixes it completely.
So that's what I've been up to. I also have a new foster kitten, but he will be in a whole new post about him!
Tuesday, January 15, 2008
Oh screw you, fibro deniers.
Okay, look assholes.
Before I started to get sick, I had an awesome career stretching out ahead of me. Sure, the arthritis hurt sometimes, but Aleve or ibuprofen usually managed it fine. I was going to do field biology, going out and seining for fish, testing streams, slogging through wetlands, you name it. I was going to maintain aquariums for the public. I was going to wrangle snakes, kiss frogs, and be the first to find the ivory-billed woodpecker in Cuba (yeah yeah don't say it).
I was a Type A personality. I LIVED to work 12+ hours days. Every moment of overtime I could get? I took it. Could I fill in on a Saturday for a sick coworker? OH CAN I! Could I stop in to make the place spiffy on my day off for a VIP? Nothing would please me more!
And then my body rebelled. And I hurt all the time, and no OTC drug would make it stop. I am crushingly exhausted. Going to the grocery store was once fun for me, and now it is a painful, detested chore. Someone brushes my upper arms, and it feels like I was punched.
I didn't ask for this. I don't WANT to have my options limited. I want to do something with my knowledge. I want to be out there in a swamp, looking for rare salamanders and endangered turtles. I want to be on a boat, hauling in a heavy net full of fish. I want to throw myself into working 12, 14, 16 hours a day.
But I can't anymore. I've been wrecked from the inside out by something that people claim isn't even real. I'm accused of wanting to be lazy, of not wanting to have to work for a living. Well, fuck you. Nothing would make me happier than working my ASS off. But I can't, and it fucking sucks.
I'd give anything for this shit to be imaginary. ANYTHING. But it isn't. Your saying it is doesn't make it so, and if you think it is, you can go fuck yourself. You have NO idea. People like you? I shouldn't, but I truly and honestly wish this upon you. You deserve it for being uncompassionate assholes who don't have enough IMAGINATION to empathize with someone whose life is different from your own.
Before I started to get sick, I had an awesome career stretching out ahead of me. Sure, the arthritis hurt sometimes, but Aleve or ibuprofen usually managed it fine. I was going to do field biology, going out and seining for fish, testing streams, slogging through wetlands, you name it. I was going to maintain aquariums for the public. I was going to wrangle snakes, kiss frogs, and be the first to find the ivory-billed woodpecker in Cuba (yeah yeah don't say it).
I was a Type A personality. I LIVED to work 12+ hours days. Every moment of overtime I could get? I took it. Could I fill in on a Saturday for a sick coworker? OH CAN I! Could I stop in to make the place spiffy on my day off for a VIP? Nothing would please me more!
And then my body rebelled. And I hurt all the time, and no OTC drug would make it stop. I am crushingly exhausted. Going to the grocery store was once fun for me, and now it is a painful, detested chore. Someone brushes my upper arms, and it feels like I was punched.
I didn't ask for this. I don't WANT to have my options limited. I want to do something with my knowledge. I want to be out there in a swamp, looking for rare salamanders and endangered turtles. I want to be on a boat, hauling in a heavy net full of fish. I want to throw myself into working 12, 14, 16 hours a day.
But I can't anymore. I've been wrecked from the inside out by something that people claim isn't even real. I'm accused of wanting to be lazy, of not wanting to have to work for a living. Well, fuck you. Nothing would make me happier than working my ASS off. But I can't, and it fucking sucks.
I'd give anything for this shit to be imaginary. ANYTHING. But it isn't. Your saying it is doesn't make it so, and if you think it is, you can go fuck yourself. You have NO idea. People like you? I shouldn't, but I truly and honestly wish this upon you. You deserve it for being uncompassionate assholes who don't have enough IMAGINATION to empathize with someone whose life is different from your own.
Monday, January 7, 2008
The Laws of Physics: Part One
I am standing on top of a three-story building, located in a normal city somewhere on Planet Earth. The weather is sunny, with only a light breeze. I go to the edge of the rooftop and drop an object over the side. The object does not fall. It instead rises upward, moves laterally, and eventually glides downward, coming to rest in a tree. After a moment, the object rises upward again, coming to rest on my hand.
I have defied the laws of physics, right?
Or, maybe my little falcon just went out for a spin. Despite being heavier than air, this living creature can use its body parts to overcome gravity for periods of time. It must expend a tremendous amount of energy to do this, but evolution has given it reason to develop wings, light bones, and strong pectoral muscles.
A dead falcon, of course, would not be able to do this. I could take a freshly dead falcon, drop it over the edge, and it would plummet straight downward. It is life that flies in the face of physical laws, defying them as long as possible in order to survive, thrive, reproduce, and move on to the next generation of living beings to repeat the cycle. Every living cell of every living being works until its death to stave off entropy and keep on living just a little bit longer. There is a will involved to manipulate things at even the molecular level. There would be no reason for the molecules of our bodies to pick up a chunk of rock and move it from one place to another, unless there were a will involved--and, in fact, once the ineffable quality of life dissipates from our molecules, we are no longer moving rocks around, or even ourselves around.
Life is intention.
When primordial life crawled from the oceans, it found that land-dwelling required an enormous energy expenditure in order to simply remain alive. Hard structures were needed to keep organs from collapsing under their own weight, as jellyfish washed up on shore. Plants developed cellulose so that they could grow upward, collecting more solar energy. Animals developed skeletons, both endo- and exo-, to support their organs and permit them to move their bodies. All of this, to fight hard against the physical law of gravity, which threatens daily to pull us down, flatten us, immobilize us. Fighting against gravity requires so much from us, even causing pain. Why the effort? Why not just lie down and die, and not put forth the effort?
Life is fighting.
Entropy threatens us at every level of our being. Our organs must constantly work to keep our bodies in order. We must keep ourselves warm enough. We have to eat in order to replace molecules and energy lost through life processes. We breathe to maintain a proper level of oxygen and carbon dioxide in our blood. Cells are lost and replaced in the neverending construction zone of our bodies. We race to keep these bodies together long enough to accomplish something, usually reproduction (for most organisms), racing against the inevitable flaws that occur in a system that isn't built to last forever, just long enough to ensure successful replacement.
Life is a struggle against the physical laws surrounding us. Defying those physical laws is something we do on a daily basis, every time we stand up, and every time we take a breath. An act of will, extant only in animate matter. Perhaps someday the nature of animate life, will, and intention will be explained by minute chemical reactions. We have already unraveled a number of these chemical reactions, after all, as part of man's quest to further unlock ways to extend life past its existing limitations. The way I see it, however, is that the relationship between living matter and physical laws is an ancient, complex struggle, for the animate to master its own matter, in defiance of the laws of physics.
This is just the beginning. I'll be getting more technical and more philosophical in the next section.
I have defied the laws of physics, right?
Or, maybe my little falcon just went out for a spin. Despite being heavier than air, this living creature can use its body parts to overcome gravity for periods of time. It must expend a tremendous amount of energy to do this, but evolution has given it reason to develop wings, light bones, and strong pectoral muscles.
A dead falcon, of course, would not be able to do this. I could take a freshly dead falcon, drop it over the edge, and it would plummet straight downward. It is life that flies in the face of physical laws, defying them as long as possible in order to survive, thrive, reproduce, and move on to the next generation of living beings to repeat the cycle. Every living cell of every living being works until its death to stave off entropy and keep on living just a little bit longer. There is a will involved to manipulate things at even the molecular level. There would be no reason for the molecules of our bodies to pick up a chunk of rock and move it from one place to another, unless there were a will involved--and, in fact, once the ineffable quality of life dissipates from our molecules, we are no longer moving rocks around, or even ourselves around.
Life is intention.
When primordial life crawled from the oceans, it found that land-dwelling required an enormous energy expenditure in order to simply remain alive. Hard structures were needed to keep organs from collapsing under their own weight, as jellyfish washed up on shore. Plants developed cellulose so that they could grow upward, collecting more solar energy. Animals developed skeletons, both endo- and exo-, to support their organs and permit them to move their bodies. All of this, to fight hard against the physical law of gravity, which threatens daily to pull us down, flatten us, immobilize us. Fighting against gravity requires so much from us, even causing pain. Why the effort? Why not just lie down and die, and not put forth the effort?
Life is fighting.
Entropy threatens us at every level of our being. Our organs must constantly work to keep our bodies in order. We must keep ourselves warm enough. We have to eat in order to replace molecules and energy lost through life processes. We breathe to maintain a proper level of oxygen and carbon dioxide in our blood. Cells are lost and replaced in the neverending construction zone of our bodies. We race to keep these bodies together long enough to accomplish something, usually reproduction (for most organisms), racing against the inevitable flaws that occur in a system that isn't built to last forever, just long enough to ensure successful replacement.
Life is a struggle against the physical laws surrounding us. Defying those physical laws is something we do on a daily basis, every time we stand up, and every time we take a breath. An act of will, extant only in animate matter. Perhaps someday the nature of animate life, will, and intention will be explained by minute chemical reactions. We have already unraveled a number of these chemical reactions, after all, as part of man's quest to further unlock ways to extend life past its existing limitations. The way I see it, however, is that the relationship between living matter and physical laws is an ancient, complex struggle, for the animate to master its own matter, in defiance of the laws of physics.
This is just the beginning. I'll be getting more technical and more philosophical in the next section.
Friday, December 7, 2007
200 POSTS HOORAY!!!!!!!
Welcome to the 200th post of She Dances On The Sand!
As of this writing, I have 20,169 hits to my blog. I can't tell you how amazed I am at the size of that number, and how pleased I am that it ends in 69 (hur hur hur). I never thought that my silly old writings would be of much interest to anyone. I started off babbling about fish, fibromyalgia, and fat. I suppose I haven't changed that much since then.
I have kept a Livejournal for years. It helped me keep track of my daily life, and I have used it many times for reviewing what I've done and when. LJ has been and continues to be a wonderful social medium for me, and the things I write there are mostly informal and personal.
Earlier this year, I decided that I wanted to write more formal items and build my writing skills, so I started a public blog to see what kind of response I would get. I have been pleasantly surprised to find that people enjoy some of the things I write, even when they are personal! I've had a wonderful time doing this, and I hope to continue as long as I have the time and energy. I have had a few periods here and there where I was not feeling well or was too busy to keep up, but I've attempted to be disciplined about posting regularly.
So, here's hoping I make it to 400 in even less time than I made it to 200. Thank you to everyone who has read my blog in the past, and to those of you who are reading this post!
As of this writing, I have 20,169 hits to my blog. I can't tell you how amazed I am at the size of that number, and how pleased I am that it ends in 69 (hur hur hur). I never thought that my silly old writings would be of much interest to anyone. I started off babbling about fish, fibromyalgia, and fat. I suppose I haven't changed that much since then.
I have kept a Livejournal for years. It helped me keep track of my daily life, and I have used it many times for reviewing what I've done and when. LJ has been and continues to be a wonderful social medium for me, and the things I write there are mostly informal and personal.
Earlier this year, I decided that I wanted to write more formal items and build my writing skills, so I started a public blog to see what kind of response I would get. I have been pleasantly surprised to find that people enjoy some of the things I write, even when they are personal! I've had a wonderful time doing this, and I hope to continue as long as I have the time and energy. I have had a few periods here and there where I was not feeling well or was too busy to keep up, but I've attempted to be disciplined about posting regularly.
So, here's hoping I make it to 400 in even less time than I made it to 200. Thank you to everyone who has read my blog in the past, and to those of you who are reading this post!
Friday, November 16, 2007
How I came upon the fibromyalgia diagnosis
So, my path to getting diagnosed as having fibromyalgia was kind of strange. I'm going to talk about it.
I'd been having bad back and neck pain for a long time. My breast reduction didn't make it significantly better, and physical therapy didn't do anything. I spent a lot of money I didn't have on PT before we finally agreed to stop throwing good money after bad.
After my surgery in '04, where I had an ovary, fallopian tube, and part of the uterus removed because they were encased in cysts, and the ovary was being torsed (twisted), causing intense, horrific pain, I started feeling achy all over. It wasn't just my joints, as previously (I have some arthritic joints), but it was in my muscles, with lots of fabulous headaches.
One day, I had severe abdominal pain that was as bad as my agony from the ovary incident, and almost as bad as the gallbladder one. Having required emergency surgery in both cases, I had Brian take me to the hospital, where I got tests and pain medicine. They pumped me full of Demerol and phenergan, which eased my agony. I drifted while the tests were done and analyzed. The doctor came back saying that they couldn't find anything wrong except for some scarring on the lungs, which he said could be from rheumatoid arthritis. I was sent home with a pain medication scrip and told to see my doctor.
My doctor put me on a round of prednisone to help with the lung, which he said was "partially collapsed". We talked about the pain, and he had a bunch of x-rays ordered and some blood tests. He finally concluded that I had fibromyalgia, since everything fit the symptoms. I got pain medication for the days when things were bad, and he put me on Cymbalta to help with pain and anxiety.
I resisted this diagnosis because, having known several people with fibro, I didn't want my life to change. I was working on becoming a field biologist, and if the pain I was experiencing continued, it would prevent me from doing that. I was already too tired and pained to do a lot of it. Eventually, though, I accepted the diagnosis, and conceded a few things.
The pain that sent me to the ER? I now recognize that as a bad muscle spasm. I get them from time to time, where they start in the back, and before long, I feel like something is stabbing me in the gut. Now that I know it's in the muscles, I can do some stretches and take a pain pill. Once the pain pill kicks in, the muscles slow down their tightening because it's the pain that makes them get worse and worse. Once it gets bad, it's really hard to tell it's a muscle pain, because it refers pain all around.
It wasn't until I got a different doctor that I finally got a thyroid problem diagnosed, and I'm still in the process of increasing the dose of Levoxyl to the right level. Apparently, with fibro, the TSH test doesn't always work because there's a feedback loop (or something like that) which prevents the TSH levels from getting high.
And so, here I am.
I'd been having bad back and neck pain for a long time. My breast reduction didn't make it significantly better, and physical therapy didn't do anything. I spent a lot of money I didn't have on PT before we finally agreed to stop throwing good money after bad.
After my surgery in '04, where I had an ovary, fallopian tube, and part of the uterus removed because they were encased in cysts, and the ovary was being torsed (twisted), causing intense, horrific pain, I started feeling achy all over. It wasn't just my joints, as previously (I have some arthritic joints), but it was in my muscles, with lots of fabulous headaches.
One day, I had severe abdominal pain that was as bad as my agony from the ovary incident, and almost as bad as the gallbladder one. Having required emergency surgery in both cases, I had Brian take me to the hospital, where I got tests and pain medicine. They pumped me full of Demerol and phenergan, which eased my agony. I drifted while the tests were done and analyzed. The doctor came back saying that they couldn't find anything wrong except for some scarring on the lungs, which he said could be from rheumatoid arthritis. I was sent home with a pain medication scrip and told to see my doctor.
My doctor put me on a round of prednisone to help with the lung, which he said was "partially collapsed". We talked about the pain, and he had a bunch of x-rays ordered and some blood tests. He finally concluded that I had fibromyalgia, since everything fit the symptoms. I got pain medication for the days when things were bad, and he put me on Cymbalta to help with pain and anxiety.
I resisted this diagnosis because, having known several people with fibro, I didn't want my life to change. I was working on becoming a field biologist, and if the pain I was experiencing continued, it would prevent me from doing that. I was already too tired and pained to do a lot of it. Eventually, though, I accepted the diagnosis, and conceded a few things.
The pain that sent me to the ER? I now recognize that as a bad muscle spasm. I get them from time to time, where they start in the back, and before long, I feel like something is stabbing me in the gut. Now that I know it's in the muscles, I can do some stretches and take a pain pill. Once the pain pill kicks in, the muscles slow down their tightening because it's the pain that makes them get worse and worse. Once it gets bad, it's really hard to tell it's a muscle pain, because it refers pain all around.
It wasn't until I got a different doctor that I finally got a thyroid problem diagnosed, and I'm still in the process of increasing the dose of Levoxyl to the right level. Apparently, with fibro, the TSH test doesn't always work because there's a feedback loop (or something like that) which prevents the TSH levels from getting high.
And so, here I am.
Wednesday, November 14, 2007
A doctor experience: High blood pressure and me
I haven't posted in a while, so I thought I'd write about a doctor experience.
A few years ago, I was scheduled to have surgery for breast reduction. My breasts had always been enormous; even when I was a twig, they ballooned outward because, for whatever reason, the glands just grew and grew. They maxed out at about an H cup when I was in college. Carrying them around for ten years took its toll on my back and neck, and I had grooves in my shoulders (now gone!) from bra straps.
About a month before the surgery, I had my family doctor checkup to get his seal of approval for the surgery. At that time, I was suffering from a headache that'd been going on for a couple of weeks (sinus infection), was going through finals at school, and was worried about a sick family member (who died later that year), and nervous as hell about surgery. My doctor came in and told me that my blood pressure was too high, and he didn't want me to have surgery unless I was able to get it down. It was 140/90. He also wanted to write me a scrip for blood pressure medication right then and there--which I most certainly did NOT want, considering the side effects. I was only 28.
I commented that it was usually NOT high, and in fact, was usually excellent. He flipped through my records and pointed out that it was high during two visits to the emergency room. Um, WHAT?
Let's see, the first visit was due to agonizing stabbing pain and unstoppable puking due to, oh, I don't know, my gall bladder being ready to explode. After the ultrasound, the ER doc (who, by the way, was AMAZING, and diagnosed it fifteen seconds after coming in) told me that I was going to have surgery, and I was being admitted right away. Being too drugged to even think about it, I didn't have the agony of anticipation, so I wasn't too nervous. The surgery was scheduled for 3pm the next day (I was admitted at about 4am). They got some blood tests back and rescheduled it for "right the heck now," which was 7:30am.
The second one was an incident where I felt something was trying to claw its way out of my face, and calling my doctor led to him telling me to go to the ER, where they weren't too busy that night, and they gave me some pain meds and antibiotics for a nasty sinus infection. I was weeping from the pain of it, and scared because I'd never felt anything like it before.
So, when I pointed out that high blood pressure is to be expected in cases of severe pain and fear, he flipped back through, noted that I averaged something like 110/70 or some such, and told me that if I were re-tested in three weeks and it was okay, he'd sign off on my surgery.
So, of course, eating disordered behavior kicked in. I switched to eating nothing but vegan fare, with zero salt, and nothing to drink but water. I ate as little as possible, just enough to stave off hunger, and nothing with many calories. Still anxiety-ridden about surgery, and still in pain from my undiagnosed sinus infection, I made sure to dose up on ibuprofen for my headache--which he had blamed on the "high" blood pressure, instead of realizing it was a sinus infection--and taught myself some relaxation skills. Even so, when I went in, it was something like 130/80, which he said was borderline, but improved enough that he'd sign off.
The morning of my surgery, I tested at 107/70 or something ridiculous like that, because the plastic surgeon was being very comforting and reassuring. He was awesome (if you EVER need plastic surgery in the Albany/Schenectady area, let me know, and I'll reveal his name to you), and the anesthesiologist was also very sweet and friendly. He looked and sounded like Woody Allen.
A week or so after my surgery, I had an appointment with my doctor. Finals were over. My surgery was completed. My headache was subjugated by pain medicine from the surgery. After pointing out that my headache did NOT improve with lower blood pressure, he finally diagnosed the sinus infection, gave me antibiotics, and it cleared right up. Imagine that.
Now, if I'd been thin, do you think I would have been excused as having situational anxiety? Do you think I would have had been offered blood pressure medication?
Meanwhile, on most recent trips to my current doc, my readings have been great, just a little elevated when I'm really hurting (123 over something). I'll also note that the office has correctly-sized cuffs, and the one time there wasn't the right size, the nurse apologized and noted in the chart that it was taken with the wrong size cuff (measured at 130/90 with the too-small cuff).
Also noteworthy is that, since I developed fibro, my upper arms are one giant tender zone, and even properly sized blood pressure cuffs are horribly painful; to me, they feel like they have been lined with thumbtacks over their entire surface. You'd think that it would raise the level--and it probably does, which tells me that my normal level is probably on the low side (which would be expected with thyroid problems, I suppose).
Help me keep things going here: Please take some time to check out my shop and see if there's anything you might like: http://rioiriri.etsy.com
A few years ago, I was scheduled to have surgery for breast reduction. My breasts had always been enormous; even when I was a twig, they ballooned outward because, for whatever reason, the glands just grew and grew. They maxed out at about an H cup when I was in college. Carrying them around for ten years took its toll on my back and neck, and I had grooves in my shoulders (now gone!) from bra straps.
About a month before the surgery, I had my family doctor checkup to get his seal of approval for the surgery. At that time, I was suffering from a headache that'd been going on for a couple of weeks (sinus infection), was going through finals at school, and was worried about a sick family member (who died later that year), and nervous as hell about surgery. My doctor came in and told me that my blood pressure was too high, and he didn't want me to have surgery unless I was able to get it down. It was 140/90. He also wanted to write me a scrip for blood pressure medication right then and there--which I most certainly did NOT want, considering the side effects. I was only 28.
I commented that it was usually NOT high, and in fact, was usually excellent. He flipped through my records and pointed out that it was high during two visits to the emergency room. Um, WHAT?
Let's see, the first visit was due to agonizing stabbing pain and unstoppable puking due to, oh, I don't know, my gall bladder being ready to explode. After the ultrasound, the ER doc (who, by the way, was AMAZING, and diagnosed it fifteen seconds after coming in) told me that I was going to have surgery, and I was being admitted right away. Being too drugged to even think about it, I didn't have the agony of anticipation, so I wasn't too nervous. The surgery was scheduled for 3pm the next day (I was admitted at about 4am). They got some blood tests back and rescheduled it for "right the heck now," which was 7:30am.
The second one was an incident where I felt something was trying to claw its way out of my face, and calling my doctor led to him telling me to go to the ER, where they weren't too busy that night, and they gave me some pain meds and antibiotics for a nasty sinus infection. I was weeping from the pain of it, and scared because I'd never felt anything like it before.
So, when I pointed out that high blood pressure is to be expected in cases of severe pain and fear, he flipped back through, noted that I averaged something like 110/70 or some such, and told me that if I were re-tested in three weeks and it was okay, he'd sign off on my surgery.
So, of course, eating disordered behavior kicked in. I switched to eating nothing but vegan fare, with zero salt, and nothing to drink but water. I ate as little as possible, just enough to stave off hunger, and nothing with many calories. Still anxiety-ridden about surgery, and still in pain from my undiagnosed sinus infection, I made sure to dose up on ibuprofen for my headache--which he had blamed on the "high" blood pressure, instead of realizing it was a sinus infection--and taught myself some relaxation skills. Even so, when I went in, it was something like 130/80, which he said was borderline, but improved enough that he'd sign off.
The morning of my surgery, I tested at 107/70 or something ridiculous like that, because the plastic surgeon was being very comforting and reassuring. He was awesome (if you EVER need plastic surgery in the Albany/Schenectady area, let me know, and I'll reveal his name to you), and the anesthesiologist was also very sweet and friendly. He looked and sounded like Woody Allen.
A week or so after my surgery, I had an appointment with my doctor. Finals were over. My surgery was completed. My headache was subjugated by pain medicine from the surgery. After pointing out that my headache did NOT improve with lower blood pressure, he finally diagnosed the sinus infection, gave me antibiotics, and it cleared right up. Imagine that.
Now, if I'd been thin, do you think I would have been excused as having situational anxiety? Do you think I would have had been offered blood pressure medication?
Meanwhile, on most recent trips to my current doc, my readings have been great, just a little elevated when I'm really hurting (123 over something). I'll also note that the office has correctly-sized cuffs, and the one time there wasn't the right size, the nurse apologized and noted in the chart that it was taken with the wrong size cuff (measured at 130/90 with the too-small cuff).
Also noteworthy is that, since I developed fibro, my upper arms are one giant tender zone, and even properly sized blood pressure cuffs are horribly painful; to me, they feel like they have been lined with thumbtacks over their entire surface. You'd think that it would raise the level--and it probably does, which tells me that my normal level is probably on the low side (which would be expected with thyroid problems, I suppose).
Help me keep things going here: Please take some time to check out my shop and see if there's anything you might like: http://rioiriri.etsy.com
Sunday, November 11, 2007
Oh shut UP already
I am so tired of these whiny assholes complaining that, "I saw a fat person in an electric wheelchair, and that is no fair, they should walk!"
Okay you morons, look:
- It is possible to be disabled AND fat
- No, being fat isn't a disability, you're right. Therefore, they must have some type of disability that isn't being fat. Sometimes, you can't see disabilities. If you weren't stupid, you'd know that.
- Yes, there are fat people in the world. Some of them go out in public. Some of the disabled ones go out in public, too. You don't want to look at them? Too bad; everyone has a right to be in public as long as they are a law-abiding citizen.
- Maybe we don't like to look at you, either, but we're not suggesting that you never go out in public.
- The medical conditions of other people are none of your business.
- The body size of other people is also none of your business.
- If you're that jealous about not being able to ride in the wheelchair, come over and I'll break your legs for you, okay? Or, hey, no one's stopping you from hopping into one at the grocery store. They don't make you show your medical records or anything.
- Walking around a store instead of riding in a scooter will not make a fat person thin. Parking at the back of a parking lot will also not make a fat person thin.
- Both of those things MAY, however, prevent that person from being able to go out in public and do their errands. And that's what this is really about, isn't it? You want the disabled fat to shut themselves in, never to be seen. It upsets you that they even exist.
- Too bad. We are here, and some of us will try to live as normal a life as possible, even when we are in pain, exhausted, bloated by our meds, or dizzy. That might mean we'll use mobility aids. Grow the fuck up and get over it.
Okay you morons, look:
- It is possible to be disabled AND fat
- No, being fat isn't a disability, you're right. Therefore, they must have some type of disability that isn't being fat. Sometimes, you can't see disabilities. If you weren't stupid, you'd know that.
- Yes, there are fat people in the world. Some of them go out in public. Some of the disabled ones go out in public, too. You don't want to look at them? Too bad; everyone has a right to be in public as long as they are a law-abiding citizen.
- Maybe we don't like to look at you, either, but we're not suggesting that you never go out in public.
- The medical conditions of other people are none of your business.
- The body size of other people is also none of your business.
- If you're that jealous about not being able to ride in the wheelchair, come over and I'll break your legs for you, okay? Or, hey, no one's stopping you from hopping into one at the grocery store. They don't make you show your medical records or anything.
- Walking around a store instead of riding in a scooter will not make a fat person thin. Parking at the back of a parking lot will also not make a fat person thin.
- Both of those things MAY, however, prevent that person from being able to go out in public and do their errands. And that's what this is really about, isn't it? You want the disabled fat to shut themselves in, never to be seen. It upsets you that they even exist.
- Too bad. We are here, and some of us will try to live as normal a life as possible, even when we are in pain, exhausted, bloated by our meds, or dizzy. That might mean we'll use mobility aids. Grow the fuck up and get over it.
Sunday, October 14, 2007
ASSumptions
I sometimes visit websites where current events are discussed, and, I'm sorry to say, I read the discussions about fat people. This is not some sort of masochistic tendency. I just feel that it's important to know what dialogues are happening outside of the FA sphere. I'm sad to say, there are a lot of very ignorant, hateful people out there, and many of them seem to be just itching for an excuse to treat another person like dog shit.
One of the biggest mistakes these people make is assuming that they know everything about a person just by looking at the size of that person's body. With no other information, the fat person is tried and convicted in one fell swoop of being irresponsible, stupid, piggish, lazy, dishonest, and, ultimately, worthless. The assumption is that, IF they weren't stupid, they would know that eating less and exercising more will make them lose weight. If they know this, and are still fat, then they are irresponsible, piggish, and lazy for not doing those things. If they say that they are doing them, or that they have tried them and failed, then they are dishonest. These huge assumptions take one enormous logical leap after another, until it is concluded that fat people are not only worthless, but they only have themselves to blame for their being worthless--and, any responsible citizen should, by way of shaming and shunning, encourage fat people to lose weight in order to prove their worth.
Which leads me to the rather glaring and ridiculous assumptions I saw the other day regarding disabled people who are fat. It was the usual pissing and moaning about how "all the motorized scooters in the grocery store are used by omg fat people omg only buying JUNK FOOD OMG!" The assumptions here were this:
- If you are fat, then you cannot be disabled
- If you ARE fat and disabled, fat is always the reason you are disabled, and losing weight will cure you--and therefore, your disability is entirely your own fault, so you should be denied any form of mobility assisting devices.
- Denying fat disabled people the use of motorized scooters will force them to walk, and subsequently, lose weight
- And, if they don't want to walk, then they don't deserve to shop, especially for groceries, as they ought to be starved until they are at a socially acceptable size.
As a person who occasionally uses a motorized cart for shopping, on days when I am in a great deal of pain and am fatigued, I am, frankly, insulted by this line of reasoning. The option for me is NOT to "walk, and lose weight" on those days, it is to stay home. If I'm having a bad day, the only thing that can make me feel confident enough to go shopping is knowing that I will likely be able to use a cart or wheelchair for the trip. Doing this not only reduces my pain; it also allows me to have a clear enough mind to get the shopping done efficiently, and not have to send the poor husband back to the store for some strange ingredient that he's going to have to call me twice while in the store in order to find.
Knowing that some of my outings are going to involve a mobility aid allows me the freedom to HAVE those outings, and, more importantly, the ability to ENJOY them. If I'm at an art museum, and all I can think about is how badly my back is hurting because it's spasming, then there is no point to my even being there. Sometimes, my cane is all I need to keep my balance and stave off the muscle tremors. Sometimes, if I know it's going to be a long jaunt, the chair is needed for me to enjoy a day with my husband.
But, is this really the issue? The haters don't seem to have any real concern for the health and well-being of the people they are complaining about. Sure, they give lip service to health care costs, but let's get down to what this is REALLY about: They don't want to have to look at happy fat people. Yes, my mobility aid allows me to get out of the house and enjoy myself, but that's exactly what is pissing people off. How dare I be out in public, looking all fat and grotesque, and not even having the sense to be ashamed of myself? That's what your real problem is, isn't it assholes? Well, guess what? That's too damn bad. I have just as much right to be out in public and shopping and visiting museums as you do. I'm not the hell affecting you any more than the next person is, so mind your own business, and maybe try giving yourself permission to be happy without it being at the expense of others for a change, okay?
One of the biggest mistakes these people make is assuming that they know everything about a person just by looking at the size of that person's body. With no other information, the fat person is tried and convicted in one fell swoop of being irresponsible, stupid, piggish, lazy, dishonest, and, ultimately, worthless. The assumption is that, IF they weren't stupid, they would know that eating less and exercising more will make them lose weight. If they know this, and are still fat, then they are irresponsible, piggish, and lazy for not doing those things. If they say that they are doing them, or that they have tried them and failed, then they are dishonest. These huge assumptions take one enormous logical leap after another, until it is concluded that fat people are not only worthless, but they only have themselves to blame for their being worthless--and, any responsible citizen should, by way of shaming and shunning, encourage fat people to lose weight in order to prove their worth.
Which leads me to the rather glaring and ridiculous assumptions I saw the other day regarding disabled people who are fat. It was the usual pissing and moaning about how "all the motorized scooters in the grocery store are used by omg fat people omg only buying JUNK FOOD OMG!" The assumptions here were this:
- If you are fat, then you cannot be disabled
- If you ARE fat and disabled, fat is always the reason you are disabled, and losing weight will cure you--and therefore, your disability is entirely your own fault, so you should be denied any form of mobility assisting devices.
- Denying fat disabled people the use of motorized scooters will force them to walk, and subsequently, lose weight
- And, if they don't want to walk, then they don't deserve to shop, especially for groceries, as they ought to be starved until they are at a socially acceptable size.
As a person who occasionally uses a motorized cart for shopping, on days when I am in a great deal of pain and am fatigued, I am, frankly, insulted by this line of reasoning. The option for me is NOT to "walk, and lose weight" on those days, it is to stay home. If I'm having a bad day, the only thing that can make me feel confident enough to go shopping is knowing that I will likely be able to use a cart or wheelchair for the trip. Doing this not only reduces my pain; it also allows me to have a clear enough mind to get the shopping done efficiently, and not have to send the poor husband back to the store for some strange ingredient that he's going to have to call me twice while in the store in order to find.
Knowing that some of my outings are going to involve a mobility aid allows me the freedom to HAVE those outings, and, more importantly, the ability to ENJOY them. If I'm at an art museum, and all I can think about is how badly my back is hurting because it's spasming, then there is no point to my even being there. Sometimes, my cane is all I need to keep my balance and stave off the muscle tremors. Sometimes, if I know it's going to be a long jaunt, the chair is needed for me to enjoy a day with my husband.
But, is this really the issue? The haters don't seem to have any real concern for the health and well-being of the people they are complaining about. Sure, they give lip service to health care costs, but let's get down to what this is REALLY about: They don't want to have to look at happy fat people. Yes, my mobility aid allows me to get out of the house and enjoy myself, but that's exactly what is pissing people off. How dare I be out in public, looking all fat and grotesque, and not even having the sense to be ashamed of myself? That's what your real problem is, isn't it assholes? Well, guess what? That's too damn bad. I have just as much right to be out in public and shopping and visiting museums as you do. I'm not the hell affecting you any more than the next person is, so mind your own business, and maybe try giving yourself permission to be happy without it being at the expense of others for a change, okay?
Saturday, September 29, 2007
World Wide Play Day
Today, my best friend Adam came over to hang out. He reminded me that today was World Wide Play Day, and suggested that we go out to a park. So, we packed a lunch (Tofurky cranberry & stuffing slices and cheddar cheese slices with wheat bread for sandwiches, a package of fresh snap peas, a bag of apples, and two fresh homemade lavender and dark chocolate brownies), grabbed a blanket and my camera, and set off for a favorite location of mine: Plotter Kill Nature Reserve.
While we didn't take the portion of the trail that goes past the waterfalls, I did manage a pretty long hike, and Adam was patient with my slower progress, giving me a hand to steady me for steep downward portions. We saw and heard blue jays, chickadees, a downy woodpecker, a gray catbird, and many other species. I introduced him to the carroty scent of Queen Anne's lace and pointed out what poison ivy looks like. I saw no reptiles or amphibians, but I wasn't looking for them.
Five years ago, I would have completed the circuit with no trouble. I actually rescued a kitten in Plotter Kill back then (her name is Akira, and she lives with someone that I worked with at the time), and it was a favorite spot for me to visit with friends. Now, I'm going to take a couple days to recover from the exertion, but it was well worth the effort.
While we didn't take the portion of the trail that goes past the waterfalls, I did manage a pretty long hike, and Adam was patient with my slower progress, giving me a hand to steady me for steep downward portions. We saw and heard blue jays, chickadees, a downy woodpecker, a gray catbird, and many other species. I introduced him to the carroty scent of Queen Anne's lace and pointed out what poison ivy looks like. I saw no reptiles or amphibians, but I wasn't looking for them.
Five years ago, I would have completed the circuit with no trouble. I actually rescued a kitten in Plotter Kill back then (her name is Akira, and she lives with someone that I worked with at the time), and it was a favorite spot for me to visit with friends. Now, I'm going to take a couple days to recover from the exertion, but it was well worth the effort.
Thursday, September 27, 2007
I'm fat and I wear Crocs. Deal with it.
You'd think this guy was just kidding, but he's not.
Apparently, Crocs are responsible for people being fat. This is because, according to some guy who makes his money off of "boot camps for brides before weddings", kids "clop along" in Crocs, or shuffle their feet. It makes me wonder if he's ever 1. seen kids walk, or 2. worn a pair of Crocs. I've seen plenty of kids shuffling as they move; hell, I did it, and I remember it being part of an attitude, not because of the shoes I was wearing. If I wanted to run, though, I bloody well ran until the asthma attack happened (before you ask, I was a THIN child and teen--asthma is a disease of the lungs, not the result of adipose tissue). When I was in high school, I was capable of dashing up or down two flights of stairs in high heels.
Now that I'm older, and I've been stricken with this stupid disease, I can't wear the heels anymore. I'm not doing a lot of running. But, I do wear Crocs. I've worn them on hikes, and I've run short distances in them without trouble. In fact, they're much easier for me to wear for those activities than other shoes, because they are light, ergonomic, and fit me very well. Wearing Crocs has pretty much eliminated all plantar fasciitis pain, enabling me to be more active than I otherwise could be. "Athletic" shoes have caused me nothing but foot pain throughout the years; I've spent a great deal of time and money trying out different brands, and while a couple brands were less painful than the rest, none have given me the freedom from pain that Crocs have.
Perhaps the big name athletic shoe companies are feeling a bite in their profits due to the success of Crocs. How about, instead of planting little fitness fascists (like the weenies in this article) to insinuate that shoes are making kids fat, they develop competitive, comfortable products that serve the needs of the customers they are losing? How about recognizing that people want to spend money on shoes that don't hurt their feet, don't fall apart within three months, and are simple to clean and care for? Sorry, large shoe companies, but I've thrown too much money away on your products, only to have them give me blisters, not provide enough shock absorption to prevent knee and ankle pain, and to be unsalvageable if I stepped in something disgusting. Learn from your losses instead of badmouthing your competitors.
Here's quote from Junkfood Science:
Also, the article included a quote from some doctor:
What she's not mentioning is that this is most likely due to the fact that prepubescent kids have a natural and temporary insulin resistance that is associated with hormonal changes and growth. This is normal and natural, allowing them to have the energy stores needed for growth and puberty. Remember, puberty? When girls get curvy? Remember when it was okay for women to look like women instead of prepubescent boys? Anyway, this (again, temporary) period of insulin resistance in growing children (remember, too, they're supposed to do that--get bigger as they get older) can lead to overzealous practitioners to label the kid with type 2 diabetes. This would be due to the fact that, in the past, no one really bothered checking for it, so kids sailed through that period of development without anyone knowing a thing.
Now, of course, they put on some fat layers as part of puberty, and everyone PANICS! because OMG ADIPOSE TISSUE OMG OMG! So we had to start testing them to prove that it's a bad thing--and of course, a healthy 9 year old kid is just the right age to start testing as insulin-resistant. Instead of waiting it out to see if it's normal puberty changes, we now have to medicate the hell out of the kid, put them on a treadmill, and enforce a 200 calorie per day diet so they don't become socially unacceptable. Because it's healthy, you know.
I'm so old that I remember when kids were allowed to do kid things, without having a mortal fear of food being programmed into them. We got to play, and physical activity was allowed to be fun. Our day wasn't scheduled from dawn to dusk, leaving plenty of room for creative activity. Reading a book was regarded as an acceptable activity instead of a fattening one. We played outside in the worst possible shoes (thongs, aka flip flops!), or even in BARE FEET. Mom gave us cookies, and we thought of them as a wholesome snack because they were fresh and mom-made. Those cookies gave us the energy to build our bodies, our brains, and our spirits, refreshing exhausted little bodies that had been busy and running around for hours; refreshing needy little hearts with mom-love; refreshing tired little brains with a boost of much-needed calories.
What happened to all that? What happened to childhood being fun? Can't we back things up about twenty years and stop this foolishness? I am SO glad I'm not having children in the paranoid climate we have today.
P.S. I highly recommend Sandy's take on this, as well as Big Fat Blog's.
Apparently, Crocs are responsible for people being fat. This is because, according to some guy who makes his money off of "boot camps for brides before weddings", kids "clop along" in Crocs, or shuffle their feet. It makes me wonder if he's ever 1. seen kids walk, or 2. worn a pair of Crocs. I've seen plenty of kids shuffling as they move; hell, I did it, and I remember it being part of an attitude, not because of the shoes I was wearing. If I wanted to run, though, I bloody well ran until the asthma attack happened (before you ask, I was a THIN child and teen--asthma is a disease of the lungs, not the result of adipose tissue). When I was in high school, I was capable of dashing up or down two flights of stairs in high heels.
Now that I'm older, and I've been stricken with this stupid disease, I can't wear the heels anymore. I'm not doing a lot of running. But, I do wear Crocs. I've worn them on hikes, and I've run short distances in them without trouble. In fact, they're much easier for me to wear for those activities than other shoes, because they are light, ergonomic, and fit me very well. Wearing Crocs has pretty much eliminated all plantar fasciitis pain, enabling me to be more active than I otherwise could be. "Athletic" shoes have caused me nothing but foot pain throughout the years; I've spent a great deal of time and money trying out different brands, and while a couple brands were less painful than the rest, none have given me the freedom from pain that Crocs have.
Perhaps the big name athletic shoe companies are feeling a bite in their profits due to the success of Crocs. How about, instead of planting little fitness fascists (like the weenies in this article) to insinuate that shoes are making kids fat, they develop competitive, comfortable products that serve the needs of the customers they are losing? How about recognizing that people want to spend money on shoes that don't hurt their feet, don't fall apart within three months, and are simple to clean and care for? Sorry, large shoe companies, but I've thrown too much money away on your products, only to have them give me blisters, not provide enough shock absorption to prevent knee and ankle pain, and to be unsalvageable if I stepped in something disgusting. Learn from your losses instead of badmouthing your competitors.
Here's quote from Junkfood Science:
Crocs are certified by the U.S. Ergonomics Council and the American Podiatric Medical Association and they’re designed to help with certain foot and circulation problems. Will anti-obesity initiatives be coming after nurses, elderly, cashiers, gardeners, diabetics, and those with foot problems next?
Also, the article included a quote from some doctor:
"I have seen 9-year-olds with type 2 diabetes," Hassink said. "Obesity is an indicator. It tells us about our environment, about our culture. It is the canary in the mine."
What she's not mentioning is that this is most likely due to the fact that prepubescent kids have a natural and temporary insulin resistance that is associated with hormonal changes and growth. This is normal and natural, allowing them to have the energy stores needed for growth and puberty. Remember, puberty? When girls get curvy? Remember when it was okay for women to look like women instead of prepubescent boys? Anyway, this (again, temporary) period of insulin resistance in growing children (remember, too, they're supposed to do that--get bigger as they get older) can lead to overzealous practitioners to label the kid with type 2 diabetes. This would be due to the fact that, in the past, no one really bothered checking for it, so kids sailed through that period of development without anyone knowing a thing.
Now, of course, they put on some fat layers as part of puberty, and everyone PANICS! because OMG ADIPOSE TISSUE OMG OMG! So we had to start testing them to prove that it's a bad thing--and of course, a healthy 9 year old kid is just the right age to start testing as insulin-resistant. Instead of waiting it out to see if it's normal puberty changes, we now have to medicate the hell out of the kid, put them on a treadmill, and enforce a 200 calorie per day diet so they don't become socially unacceptable. Because it's healthy, you know.
I'm so old that I remember when kids were allowed to do kid things, without having a mortal fear of food being programmed into them. We got to play, and physical activity was allowed to be fun. Our day wasn't scheduled from dawn to dusk, leaving plenty of room for creative activity. Reading a book was regarded as an acceptable activity instead of a fattening one. We played outside in the worst possible shoes (thongs, aka flip flops!), or even in BARE FEET. Mom gave us cookies, and we thought of them as a wholesome snack because they were fresh and mom-made. Those cookies gave us the energy to build our bodies, our brains, and our spirits, refreshing exhausted little bodies that had been busy and running around for hours; refreshing needy little hearts with mom-love; refreshing tired little brains with a boost of much-needed calories.
What happened to all that? What happened to childhood being fun? Can't we back things up about twenty years and stop this foolishness? I am SO glad I'm not having children in the paranoid climate we have today.
P.S. I highly recommend Sandy's take on this, as well as Big Fat Blog's.
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