I have an appointment with the wheelchair seating clinic at the big elite medical center in mid-December. I love you, Dr. Rheumatologist! I think this process is new for him too, as most people just get a prescription and go to the vendor insurance recommends or directly to a vendor they know about (as I did before). So we'll see--at least getting an appropriate cushion that will fit and that relieves pain will help a lot. I have a full prescription rather than just a cushion prescription so we can do what's needed (a combination of my expertise about my body and a therapist's about chairs). He's also glad to help with forms for the service dogs. He did not realize I often cannot get out of bed by myself.
I have to see a pulmonologist before trying Enbrel (but that was the only specialist I didn't have!). Probably for the best since I have had a mild cough since September--don't want to give myself a b bad infection. Le sigh. No le torture wanted. I am having weird nail changes/finger pain due to arthritis, so dermatologist in January.
Worked it out with a few people who weren't talking to me and found out what some of their fears were with talking to me (something that never occurred to me about me looking like I needed help but not knowing if they should offer). Now I feel more comfortable at one of the kids' weekly activities.
Tired mama.
Advice? Things I should know or consider?
Tuesday, November 10, 2009
Friday, November 6, 2009
Service Dog Apps and Wheelchair Seating Clinic
I have started the service dogs apps and met with one of the local organizations. The concern is whether I can make it through the training and whether I could be too disabled to qualify (ironic since obviously there are people with far more immediate physical limitations--but who may be able to be out more and sit up more). I really like the dogs and the training with the local organization--though I will apply to several because of the waiting lists and because I may not be accepted to all (or any). I will apply to three organizations that are local or where friends/family live with whom I can stay during training, as I can't afford the training otherwise.
I am also working on improved wheelchair seating--whether a better cushion or something more customized than the scooter--and let the service dog organizations know I am doing this, because that increases my independence and decreases pain. The process makes me want to cry in frustration, and I don't want to deal with insurance again, but I've started the process and we'll hope for the best. I didn't even know about seating clinics last time--and that's what I'm seeking a referral to this time.
I've explained to my doctor that I'm too young to be this housebound, that my husband may have to work for a year in another state on contract work (leaving me without assistance--but we can't afford two moves a year apart)--I need to do what I can to keep myself independent. Most of these jobs are temp to hire--wanting to try someone out before committing. I've told him to go for it, that we have to have ome kind of income. Besides, he is unlikely to be able to telecommute with a new job even locally, based on what's available--at least starting out. I've explained to my doctor that service dog organizations make the decisions and prioritize their waiting lists, that I'd not be taking a dog from someone else--and many of them do assign dogs to people who have lesser disabilities, even people who can walk but who need the assistance to be independent or hold a job (yes, I need that assistance to hold a job outside my home, as I'd like to do--the longer the hours, the more I need the dog, or rather, a dog will help me maximize my hours). While the waiting lists are two to five years, I am not going to get one by continuing to not apply to new places. One organization with whom I'd applied had tragedy strike (death of owner), while another I had applied to--I really liked the director and the dogs--is out of reach because we would have to fly rather than drive. I had just put everything on hold because of unemployment--even the costs of applying concerned me. No longer--it's not helping.
I have a feeling God needs me to take care of myself before He can take care of more. Right now my husband feels horrible about the idea of leaving me without help--for a workday or more generally if he has to work out-of-state on contract work. But we will figure things out somehow--we will. Even when we're upset with each other, he'll still help me to the bathroom while we're mad or get things I need but can't.
Let's hope for the best--improved seating and a working partnership and companionship from a service dog. I can get up with the help of a quad cane, for example, but often it's out of reach and sometimes it falls.
If anyone else is on the spondylitis spectrum, here's an article on someone with spondylitis who has a service dog:
http://www.abilitymagazine.com/current/animals.html
I am also working on improved wheelchair seating--whether a better cushion or something more customized than the scooter--and let the service dog organizations know I am doing this, because that increases my independence and decreases pain. The process makes me want to cry in frustration, and I don't want to deal with insurance again, but I've started the process and we'll hope for the best. I didn't even know about seating clinics last time--and that's what I'm seeking a referral to this time.
I've explained to my doctor that I'm too young to be this housebound, that my husband may have to work for a year in another state on contract work (leaving me without assistance--but we can't afford two moves a year apart)--I need to do what I can to keep myself independent. Most of these jobs are temp to hire--wanting to try someone out before committing. I've told him to go for it, that we have to have ome kind of income. Besides, he is unlikely to be able to telecommute with a new job even locally, based on what's available--at least starting out. I've explained to my doctor that service dog organizations make the decisions and prioritize their waiting lists, that I'd not be taking a dog from someone else--and many of them do assign dogs to people who have lesser disabilities, even people who can walk but who need the assistance to be independent or hold a job (yes, I need that assistance to hold a job outside my home, as I'd like to do--the longer the hours, the more I need the dog, or rather, a dog will help me maximize my hours). While the waiting lists are two to five years, I am not going to get one by continuing to not apply to new places. One organization with whom I'd applied had tragedy strike (death of owner), while another I had applied to--I really liked the director and the dogs--is out of reach because we would have to fly rather than drive. I had just put everything on hold because of unemployment--even the costs of applying concerned me. No longer--it's not helping.
I have a feeling God needs me to take care of myself before He can take care of more. Right now my husband feels horrible about the idea of leaving me without help--for a workday or more generally if he has to work out-of-state on contract work. But we will figure things out somehow--we will. Even when we're upset with each other, he'll still help me to the bathroom while we're mad or get things I need but can't.
Let's hope for the best--improved seating and a working partnership and companionship from a service dog. I can get up with the help of a quad cane, for example, but often it's out of reach and sometimes it falls.
If anyone else is on the spondylitis spectrum, here's an article on someone with spondylitis who has a service dog:
http://www.abilitymagazine.com/current/animals.html
Tuesday, November 3, 2009
Laura Hillenbrand on Chronic Fatigue
If you haven't had a chance to read Laura Hillenbrand's essay on the development of her chronic fatigue and how she managed to write Seabiscuit paragraph by paragraph, it is well worth your time to do so:
http://www.cfids-cab.org/MESA/Hillenbrand.html
http://www.cfids-cab.org/MESA/Hillenbrand.html
Thursday, October 29, 2009
New Podlett, New Doctor
My new fleece Podlett came in the mail today--the first thing I've bought for myself since I can remember (before the layoff; reimbursed medical products excepted). The Podlett can be used as a wheelchair blanket and there's a pocket for your feet that comes up behind the knees. No more hypothermia on campouts and fall events and getting blankets muddy and grassy as they fall off my lap, while the back of my legs and my feet still freeze. I'll still have to wear thermal underwear when it's really cold. I love it! You could probably also fit another lightweight layer/blanket inside it if you needed.
http://www.podlett.com/
I bought this with our ebay money--maybe I shouldn't have, but I would have to stay at home a lot otherwise. The scooter wheels do not like blankets, and I can't steer and hold one in place. It will be used--at home too. On last year's annual campout I got hypothermia quickly and could not get completely warm the whole weekend. This time, I sweat in my long johns on the way down rather than waiting to change, and the Podlett will be on immediately and can be used in the tent. My husband will also go down earlier with someone else to set up the tent and start a fire.
The new doctor/internist: I like her a lot. The door in her office was hung on the wrong end of the door frame so it's *very* difficult to get in and out of the patient room because it can't be opened all the way--wondering if I should suggest that this be moved to the other part of the door frame. Yes, we called first.
High pain/going. I will catch up on emails to several of you soon.
http://www.podlett.com/
I bought this with our ebay money--maybe I shouldn't have, but I would have to stay at home a lot otherwise. The scooter wheels do not like blankets, and I can't steer and hold one in place. It will be used--at home too. On last year's annual campout I got hypothermia quickly and could not get completely warm the whole weekend. This time, I sweat in my long johns on the way down rather than waiting to change, and the Podlett will be on immediately and can be used in the tent. My husband will also go down earlier with someone else to set up the tent and start a fire.
The new doctor/internist: I like her a lot. The door in her office was hung on the wrong end of the door frame so it's *very* difficult to get in and out of the patient room because it can't be opened all the way--wondering if I should suggest that this be moved to the other part of the door frame. Yes, we called first.
High pain/going. I will catch up on emails to several of you soon.
Wednesday, October 28, 2009
On Disability and Rudeness
I feel like I am Sappho without the poetry, writing in fragments. I'm adding to and posting several bits at once, though now I'm behind on correspondence! This is a piece that I started before my daughter came home ill from school a few weeks ago:
"Hands off me, creepy guy at Starbucks, before I karate chop your man bits," a female friend of mine wrote recently, recollecting a moment with an overly flirtatious stranger. She only thought this and did not say anything in person; women have often been taught to be polite to people who are invading our space or our privacy. Women who are disabled often experience additional sticky terrain and unwanted confrontations. Men with disabilities also experience many of the same difficult interactions.
Putting aside gender for a moment, when disability is involved, the rudeness of others is often deflected back onto us--we are considered rude for not complying with the rude behaviors of others or for requesting our rights. I've seen myself expected to answer personal questions that I'd rather not answer--in front of family members. I know that not answering, no matter how gently I aver, would be taken as rude; it's a break in the back-and-forth of conversation, a refusal to interact. Assertion can be double-edged--if we speak up for ourselves, we make it less likely for that person to do the same to others, but this does not help interactions. Even though Miss Manners does tell people not to ask questions or invade our space, they do. In a nutshell, we are considered the rude ones for not answering nosy questions, for defending our personal space or bodily autonomy, or for making requests for accommodation for others. Sometimes we are considered rude for existing, for being in the way, our bodies regarded as physical obstacles, nevermind that people who use grocery carts or baby strollers, also assistive devices, occupy the same space.
Take the examples of Wheelie Catholic, who has been repeatedly rammed into with a grocery cart because someone is annoyed with her existence and Laurie Clements Lambeth, a poet with multiple sclerosis who must claim her space in the store. And Katja at Broken Clay, who was recently denied a comfortable theater seat by someone reading the signage so strictly that she would not move over one seat for Katja and her husband. By refusing to move because Katja did not state her requests "properly" and did not give the full explanation requested, this woman was able to see her own act of unkindness as righteous and could ignore the physical and social discomfort of another person without guilt or a sense of wrongdoing.
I don't understand why kindness goes away, why we are treated as lesser or our lives seen as not worthwhile. In a more extreme example, when my grandfather died, within an hour or two a stream of visitors showed up to my grandparents' home. So many people said that he was in a better place, which accorded with my grandmother's beliefs but isn't much comfort during immediate grief. But they also said that he was suffering so much, had suffered so much, had been so ill and so housebound, and now that he's better off. They said this in front of me. It made me feel like they thought I should die. I don't agree with this rudeness--it was not comforting at all. He wanted to live and had even changed his mind about his advance directives. He wanted to live! Even at the end, he preferred life as long as he could, despite pain that made him restless and made him grimace and close his eyes tight. What a view of disability people have. The church woman who leaned over his bed, telling him to "let go, just let go"--that wasn't her place. He was disabled. I am disabled. People said he never complained or mentioned his pain. They just didn't listen. They don't listen to us.
How do we protect ourselves without obscuring our point? How do we respond to others--or not respond to them, without becoming doormats or being labeled as bitches? I don't have the answer, only the thought, again, that others project their rudeness onto us if we don't accept what they say.
"Hands off me, creepy guy at Starbucks, before I karate chop your man bits," a female friend of mine wrote recently, recollecting a moment with an overly flirtatious stranger. She only thought this and did not say anything in person; women have often been taught to be polite to people who are invading our space or our privacy. Women who are disabled often experience additional sticky terrain and unwanted confrontations. Men with disabilities also experience many of the same difficult interactions.
Putting aside gender for a moment, when disability is involved, the rudeness of others is often deflected back onto us--we are considered rude for not complying with the rude behaviors of others or for requesting our rights. I've seen myself expected to answer personal questions that I'd rather not answer--in front of family members. I know that not answering, no matter how gently I aver, would be taken as rude; it's a break in the back-and-forth of conversation, a refusal to interact. Assertion can be double-edged--if we speak up for ourselves, we make it less likely for that person to do the same to others, but this does not help interactions. Even though Miss Manners does tell people not to ask questions or invade our space, they do. In a nutshell, we are considered the rude ones for not answering nosy questions, for defending our personal space or bodily autonomy, or for making requests for accommodation for others. Sometimes we are considered rude for existing, for being in the way, our bodies regarded as physical obstacles, nevermind that people who use grocery carts or baby strollers, also assistive devices, occupy the same space.
Take the examples of Wheelie Catholic, who has been repeatedly rammed into with a grocery cart because someone is annoyed with her existence and Laurie Clements Lambeth, a poet with multiple sclerosis who must claim her space in the store. And Katja at Broken Clay, who was recently denied a comfortable theater seat by someone reading the signage so strictly that she would not move over one seat for Katja and her husband. By refusing to move because Katja did not state her requests "properly" and did not give the full explanation requested, this woman was able to see her own act of unkindness as righteous and could ignore the physical and social discomfort of another person without guilt or a sense of wrongdoing.
I don't understand why kindness goes away, why we are treated as lesser or our lives seen as not worthwhile. In a more extreme example, when my grandfather died, within an hour or two a stream of visitors showed up to my grandparents' home. So many people said that he was in a better place, which accorded with my grandmother's beliefs but isn't much comfort during immediate grief. But they also said that he was suffering so much, had suffered so much, had been so ill and so housebound, and now that he's better off. They said this in front of me. It made me feel like they thought I should die. I don't agree with this rudeness--it was not comforting at all. He wanted to live and had even changed his mind about his advance directives. He wanted to live! Even at the end, he preferred life as long as he could, despite pain that made him restless and made him grimace and close his eyes tight. What a view of disability people have. The church woman who leaned over his bed, telling him to "let go, just let go"--that wasn't her place. He was disabled. I am disabled. People said he never complained or mentioned his pain. They just didn't listen. They don't listen to us.
How do we protect ourselves without obscuring our point? How do we respond to others--or not respond to them, without becoming doormats or being labeled as bitches? I don't have the answer, only the thought, again, that others project their rudeness onto us if we don't accept what they say.
Denied, A New Book
The photos in the short book Denied (linked below and discovered in New Mobility) show the life-changing effects of good versus poor wheelchair seating and explain the Medicare in-home restriction, which insurance companies also adopt:
http://www.blurb.com/books/869705
See the text of HR 3184 at:
http://www.opencongress.org/bill/111-h3184/text
http://www.blurb.com/books/869705
See the text of HR 3184 at:
http://www.opencongress.org/bill/111-h3184/text
What I Want to Write to Abled People But Don't
Personal updates to follow at end.
How do you talk to a disabled person?
Twice this week, two people who were listening to me talk about the social changes that coincide with disability told me that people just don't know how to talk to someone in a wheelchair. Now one of these people, a friend, certainly talks to me and the other person works with a service dog group, so they don't mean themselves. I've found what they said to be true. My suggestion is to at least try, because often you'll be the only person who does. This is often more damaging to my children than to me. Converse with me as you would with anyone--about the kids' school or activities, education, politics, the arts, travel, our children, the odd weather, upcoming holidays, disability issues, health care reform. If you don't know me, make the same small talk with me as you would with anyone. If you already know me, I'm truly the same person. If you're feeling awkward about wheelchair use, work on overcoming that; I don't feel awkward about it at all but I do sometimes feel absolutely unwelcome when you won't make eye contact, say hello, or speak to me anymore. If you're so concerned that you'll be rude that you'll freeze up, here are some suggestions, most of which have little to do with what you say and more with safety or manners:
-Don't race me to the elevator, jump on, and let the doors close before I can get on. Don't offer to hold the heavy glass door for me and then let it slam hard on me. Don't illegally hog up all the disabled parking at the school without a permit. Don't make your child get up when she tries to sit next to my kids. See, you're nicer than that--what do you have to worry about?
-When my eyes open wide with fear, like this -- OO -- back away slowly. *Please* do not tear up my wheelchair or allow your kids to do so. I cannot protect myself and often can't move out of the way quickly.
-This one's tricky. Don't stare and point--I will stare and point back. But don't avoid talking to me and looking at me. It's very weird and lonely to sit next to people for an hour or hour and a half and not have them look at or speak to you.
-Don't squeeze past like Borat! Please be aware that your rear end or crotch is at my eye level--Nancy Mairs was being polite when she wrote "Waist High in the World." Please give me time to move or go around and be aware that you can cause me a lot of pain if you force your body between my wheelchair and a wall, push me in the back, etc.
-Please do ask if it looks like I need help with something--I'm reluctant to ask because of people who have snapped but I may need assistance. But please accept if I say no--I may want to push an automatic door opener myself so it doesn't close on me when I'm halfway through and trap me between double doors--again, I can be injured if you try to push me in the back to "help" me over a bump, I can't get my chair off the lift if you overtighten the hooks, etc.
-Don't hit me in the head with your shopping bag or backpack or prevent me from moving or seeing by placing yourself or objects in front of me. Give me time to move or go around.
-If you have placed a long scratch on or dent my wheelchair, especially intentionally (and squeezing past rather than going one step around is intentional), you might consider parking your car far, far away from the disability parking. My wheelchair is part of my physical appearance and I like it the way it is.
-Please do not ask me or my friends what's "wrong" with me. Please do not dig for details so you can tell me how I need to fix it, especially if we've just met. Don't whisper "acupuncture" at me every time I roll by. Chances are that I've tried everything, alternative and traditional, that won't harm me and have invested huge amounts of money and time into it, to little end. Please accept the way I am. If we know each other well, you can ask/discuss more privately, but please protect my medical privacy if I entrust you with it.
-Please do not test my reflexes and electromagnetic braking by hurling your body in front of me. I could end up in a wheelchair (joke recalled from Wheelchair Kamikaze).
-I don't want to find out what cartwheeling backwards on a ramp is like, so don't play with the anti-tip wheels on the back--they are not calling your name, nor your kids'. Don't climb over my lap, lean on the scooter, or climb over into the front end to get by. I am not your footrest. Please do not scratch up the paint, whirl me around in my seat, or pat me on the head.
-Unless you're a close friend or family, don't feel up my wheelchair, rubbing your hands all over the hand controls and seat back, even if I'm not sitting in it (this happened a lot at the hospital ICU, with church members and families of other patients--they did not listen when I asked them to stop). I am going to be dragging out the Purell when I get home, not from OCD (that's CDO alphabetized), but because I don't want pneumonia again. Trying out the scooter is by special permission. I don't run up to the chair you're sitting in and start pulling on or caressing it.
-Even if I demur, I love compliments ("what, this old wheelchair?") and people who are positive. Please don't make jokes about my wheelchair unless you can be original (speeding ticket and beeping noises, not so much). But again, don't make fun of me. I am as much a nerd about wheelchair use as about everything else and will be quick to bore you with technical specifications if you show interest.
-No, I don't know that other wheelchair or scooter user who always drives in the street. Unless it was me because of a lack of curb cuts at the hospital/medical complex. Yes, I know you were almost in a wheelchair once. So was I. :)
Most of these are pretty obvious and people adopt them easily when they know.
Miss Manners covers this better than I do--she's a liberal and very feminist (start one page back; she discusses visual impairments in the next section and then has another section on wheelchair use).
This lacks a nice wrap-up, but that sums up my life right now. I originally wrote this in a more neutral tone but switched to a more humorous tone (I hope it sounds this way rather than sarcastic)--I think some people are so worried about making mistakes when talking to disabled people that they won't try.
Personal updates:
I have been writing some but not as much, not getting around to final editing and posting because of fatigue and pain or other things that must be done when I'm not fatigued or in pain. We have been at a truce in our household, thank God (though it's not really an equal truce--"he's decided" that it's not fair to ask that much of me when I'm in very severe pain or ill). I talked to an assistance dog organization last week and get to meet with the dogs next week--this really good organization typically helps veterans, but they do take applications from others and have graduated some non-vets. I had dropped the application process because I can't afford the couple of weeks' hotel and other travel expenses. Two other state organizations are now defunct and one requires financial commitments and fundraising. I also found a new primary care doctor who is highly recommended--and only five minutes away. This will be a lot easier logistically, in terms of fatigue when I'm sick, etc. She is a mom to two boys and wants to keep a small, unrushed practice--she has just one assistant and plenty of time for people, my friend says. My last doctor's religious beliefs sometimes caused problems in our interactions and with my friends' interactions with him; I am hoping this doctor's do not.
How do you talk to a disabled person?
Twice this week, two people who were listening to me talk about the social changes that coincide with disability told me that people just don't know how to talk to someone in a wheelchair. Now one of these people, a friend, certainly talks to me and the other person works with a service dog group, so they don't mean themselves. I've found what they said to be true. My suggestion is to at least try, because often you'll be the only person who does. This is often more damaging to my children than to me. Converse with me as you would with anyone--about the kids' school or activities, education, politics, the arts, travel, our children, the odd weather, upcoming holidays, disability issues, health care reform. If you don't know me, make the same small talk with me as you would with anyone. If you already know me, I'm truly the same person. If you're feeling awkward about wheelchair use, work on overcoming that; I don't feel awkward about it at all but I do sometimes feel absolutely unwelcome when you won't make eye contact, say hello, or speak to me anymore. If you're so concerned that you'll be rude that you'll freeze up, here are some suggestions, most of which have little to do with what you say and more with safety or manners:
-Don't race me to the elevator, jump on, and let the doors close before I can get on. Don't offer to hold the heavy glass door for me and then let it slam hard on me. Don't illegally hog up all the disabled parking at the school without a permit. Don't make your child get up when she tries to sit next to my kids. See, you're nicer than that--what do you have to worry about?
-When my eyes open wide with fear, like this -- OO -- back away slowly. *Please* do not tear up my wheelchair or allow your kids to do so. I cannot protect myself and often can't move out of the way quickly.
-This one's tricky. Don't stare and point--I will stare and point back. But don't avoid talking to me and looking at me. It's very weird and lonely to sit next to people for an hour or hour and a half and not have them look at or speak to you.
-Don't squeeze past like Borat! Please be aware that your rear end or crotch is at my eye level--Nancy Mairs was being polite when she wrote "Waist High in the World." Please give me time to move or go around and be aware that you can cause me a lot of pain if you force your body between my wheelchair and a wall, push me in the back, etc.
-Please do ask if it looks like I need help with something--I'm reluctant to ask because of people who have snapped but I may need assistance. But please accept if I say no--I may want to push an automatic door opener myself so it doesn't close on me when I'm halfway through and trap me between double doors--again, I can be injured if you try to push me in the back to "help" me over a bump, I can't get my chair off the lift if you overtighten the hooks, etc.
-Don't hit me in the head with your shopping bag or backpack or prevent me from moving or seeing by placing yourself or objects in front of me. Give me time to move or go around.
-If you have placed a long scratch on or dent my wheelchair, especially intentionally (and squeezing past rather than going one step around is intentional), you might consider parking your car far, far away from the disability parking. My wheelchair is part of my physical appearance and I like it the way it is.
-Please do not ask me or my friends what's "wrong" with me. Please do not dig for details so you can tell me how I need to fix it, especially if we've just met. Don't whisper "acupuncture" at me every time I roll by. Chances are that I've tried everything, alternative and traditional, that won't harm me and have invested huge amounts of money and time into it, to little end. Please accept the way I am. If we know each other well, you can ask/discuss more privately, but please protect my medical privacy if I entrust you with it.
-Please do not test my reflexes and electromagnetic braking by hurling your body in front of me. I could end up in a wheelchair (joke recalled from Wheelchair Kamikaze).
-I don't want to find out what cartwheeling backwards on a ramp is like, so don't play with the anti-tip wheels on the back--they are not calling your name, nor your kids'. Don't climb over my lap, lean on the scooter, or climb over into the front end to get by. I am not your footrest. Please do not scratch up the paint, whirl me around in my seat, or pat me on the head.
-Unless you're a close friend or family, don't feel up my wheelchair, rubbing your hands all over the hand controls and seat back, even if I'm not sitting in it (this happened a lot at the hospital ICU, with church members and families of other patients--they did not listen when I asked them to stop). I am going to be dragging out the Purell when I get home, not from OCD (that's CDO alphabetized), but because I don't want pneumonia again. Trying out the scooter is by special permission. I don't run up to the chair you're sitting in and start pulling on or caressing it.
-Even if I demur, I love compliments ("what, this old wheelchair?") and people who are positive. Please don't make jokes about my wheelchair unless you can be original (speeding ticket and beeping noises, not so much). But again, don't make fun of me. I am as much a nerd about wheelchair use as about everything else and will be quick to bore you with technical specifications if you show interest.
-No, I don't know that other wheelchair or scooter user who always drives in the street. Unless it was me because of a lack of curb cuts at the hospital/medical complex. Yes, I know you were almost in a wheelchair once. So was I. :)
Most of these are pretty obvious and people adopt them easily when they know.
Miss Manners covers this better than I do--she's a liberal and very feminist (start one page back; she discusses visual impairments in the next section and then has another section on wheelchair use).
This lacks a nice wrap-up, but that sums up my life right now. I originally wrote this in a more neutral tone but switched to a more humorous tone (I hope it sounds this way rather than sarcastic)--I think some people are so worried about making mistakes when talking to disabled people that they won't try.
Personal updates:
I have been writing some but not as much, not getting around to final editing and posting because of fatigue and pain or other things that must be done when I'm not fatigued or in pain. We have been at a truce in our household, thank God (though it's not really an equal truce--"he's decided" that it's not fair to ask that much of me when I'm in very severe pain or ill). I talked to an assistance dog organization last week and get to meet with the dogs next week--this really good organization typically helps veterans, but they do take applications from others and have graduated some non-vets. I had dropped the application process because I can't afford the couple of weeks' hotel and other travel expenses. Two other state organizations are now defunct and one requires financial commitments and fundraising. I also found a new primary care doctor who is highly recommended--and only five minutes away. This will be a lot easier logistically, in terms of fatigue when I'm sick, etc. She is a mom to two boys and wants to keep a small, unrushed practice--she has just one assistant and plenty of time for people, my friend says. My last doctor's religious beliefs sometimes caused problems in our interactions and with my friends' interactions with him; I am hoping this doctor's do not.
Sunday, October 4, 2009
Grandfather Passed Away
My grandfather passed away this morning at 11:00 with as many family members who could get there quickly enough there--I rubbed his head and Grandma and my aunt held him while my uncle and church members said prayers and words of encouragement. The hospice workers were wonderful.
Tuesday, September 29, 2009
Going Crazy
Warning--skip this rambling rant if illogical rants get to you. I feel like I am about to drop into an abyss right now. Family members' ostracism of a cousin is bringing back bad memories of my own experience of being "disowned" for getting engaged (family truly believed my sister and I were property) and the aftermath of being excluded until the past few years. I reached out to her to offer a listening ear, others found out about it, and now they're all infuriated with me. I guess because I'm not picking on her like a fish ripping the fins off the unchosen one in the aquarium. My sister and I were abused as kids and I can barely talk about it. But a big "fuck you" to Frida for being nice to her, to someone who was badly abused as a child, kicked out as soon as she turned 18, and had so few skills that she had to live out of cars and steal to survive and feed her babies (could not survive on minimum wage alone).
People took my mother aside today, talked shit about me, and told her to call me so that I could be told what I needed to think. Yeah, Frida, rip people's fins off like everyone else! No, my mom didn't participate as they expected and instructed.
I'm upset everyone's bothered my grandmother with all this crap (let's call it what it is) right now. This is not a good idea since she had a mental breakdown and had to be hospitalized after her mother died and I don't think things are going well. My grandmother has, though, continued to participate in the shunning of this cousin. I'm tired of people's racism, prejudice, unfairness to each other, gossip, and just plain negativity. No one seems to have anything positive to say about any family member (and yes, I fully understand the irony that I'm complaining right now). If people are there at their house, they're annoyed. If they're not there, they're also annoyed about that. They're nice to church people and visitors but let themselves get so exhausted by that they take it out on everyone else. Whether you're helping or not helping, you're just wrong, wrong, wrong. There's just no way to win. It's your responsibility to call and others shouldn't have to call you to help, but call to help and you're interfering and taking up others' time. They're gossiping about my mother to me. Oh, no, she has to work (she and my dad are barely keeping a roof over their heads). They're gossiping about my great-uncle to me (oh no, he's there for them). About my sister. I just feel sick about it. I don't respond to it. But I feel sickened by it.
They're using my developmentally disabled uncle like a pawn.
My husband's upset with me because I can't "put out" twice weekly because of extreme pain right now and I'm ready to say to hell with it at all and move with the kids to my sisters' (this arrangement has been agreed on by everyone already--no illegal moving across state lines with kids). I am stressed out enough to feel like I can't unwind at all. I feel sick at my stomach. He's been emailing my friends. Nothing else that I do matters if I can't meet that one need, which he can't meet himself. I feel reduced to a biological function. He's saying I shouldn't have gone to the gardens this weekend because I can't meet my "responsibility." This is not an atypical argument for us. I think this verges on abusive but hey, I'm just one opinion that doesn't count for anything anyway. As a near autistic himself, he's always been lacking in the empathy/other points-of-view department. Like why my friend might want me to get her a birthday present for her birthday party.
Two of my son's three teachers have not been responding to phone calls and emails with brief questions that we desperately need the answers to. One gave him a behavior mark because we turned a signed paper into his weekly signed-papers folder rather than his homework folder (no specific instructions were given for how to return it). Other crap crap crap with them. I have not done anything to them or said anything rude to them.
I can't get my own crap done.
I hate my goddamned life.
People took my mother aside today, talked shit about me, and told her to call me so that I could be told what I needed to think. Yeah, Frida, rip people's fins off like everyone else! No, my mom didn't participate as they expected and instructed.
I'm upset everyone's bothered my grandmother with all this crap (let's call it what it is) right now. This is not a good idea since she had a mental breakdown and had to be hospitalized after her mother died and I don't think things are going well. My grandmother has, though, continued to participate in the shunning of this cousin. I'm tired of people's racism, prejudice, unfairness to each other, gossip, and just plain negativity. No one seems to have anything positive to say about any family member (and yes, I fully understand the irony that I'm complaining right now). If people are there at their house, they're annoyed. If they're not there, they're also annoyed about that. They're nice to church people and visitors but let themselves get so exhausted by that they take it out on everyone else. Whether you're helping or not helping, you're just wrong, wrong, wrong. There's just no way to win. It's your responsibility to call and others shouldn't have to call you to help, but call to help and you're interfering and taking up others' time. They're gossiping about my mother to me. Oh, no, she has to work (she and my dad are barely keeping a roof over their heads). They're gossiping about my great-uncle to me (oh no, he's there for them). About my sister. I just feel sick about it. I don't respond to it. But I feel sickened by it.
They're using my developmentally disabled uncle like a pawn.
My husband's upset with me because I can't "put out" twice weekly because of extreme pain right now and I'm ready to say to hell with it at all and move with the kids to my sisters' (this arrangement has been agreed on by everyone already--no illegal moving across state lines with kids). I am stressed out enough to feel like I can't unwind at all. I feel sick at my stomach. He's been emailing my friends. Nothing else that I do matters if I can't meet that one need, which he can't meet himself. I feel reduced to a biological function. He's saying I shouldn't have gone to the gardens this weekend because I can't meet my "responsibility." This is not an atypical argument for us. I think this verges on abusive but hey, I'm just one opinion that doesn't count for anything anyway. As a near autistic himself, he's always been lacking in the empathy/other points-of-view department. Like why my friend might want me to get her a birthday present for her birthday party.
Two of my son's three teachers have not been responding to phone calls and emails with brief questions that we desperately need the answers to. One gave him a behavior mark because we turned a signed paper into his weekly signed-papers folder rather than his homework folder (no specific instructions were given for how to return it). Other crap crap crap with them. I have not done anything to them or said anything rude to them.
I can't get my own crap done.
I hate my goddamned life.
Saturday, September 26, 2009
"New" Wheelie Friend
I have a new wheelie friend today--she's new to me as a wheelie, but not new to me as a friend. My second cousin, herself a twin, whom I mentioned a while back, has arachnoiditis and uses a manual wheelchair when she's out and a small scooter at home since she can't power herself. She's so tiny her husband can carry her and her manual wheelchair up the steps into my grandmother's house. I will never be that tiny even if I were very, very thin. It's not the tininess I'm jealous of, but rather the ability to get herself inside in her chair.
When I visit others, I can't get my scooter in. So often I can't attend or must sit in one spot, or I must build in some real "suffer time" for recovery later from being unable to use the scooter or sit comfortably. And yet some people's perceptions of me can be that I'm not very disabled (because they've never seen me using a wheelchair or scooter), or that I'm lazy (not getting up = "giving in," "not fighting it"). Very close relatives--my husband's sister and grandmother, friends we've known for many years whom we see regularly (well, I'm absent a lot) have never seen me use it. Since I can get around my own home well, it really bothered me that my mother-in-law refused to have my own son's (!) and my husband's birthdays here, even though we have the space. I run into this kind of thing a lot. (We can get the smaller scooter in but I have trouble sitting in it for long--transferring in and out multiple times also increases pain unendurably).
Here's an argument for universal design--everywhere. Disability cuts us off from family and friends first. Often I can go to public places for a while but can't go to others' homes because the pain of getting around without the scooter is too much. I can't go out to the pool area where everyone else is, or up to a game room, etc. I can't carry portable ramps in dozens of possible configurations--and thresholds are still a problem. Even when I walk to get in, big steps or a series of steps are a huge problem. I can't gather in the kitchen with everyone else because I can't stand up long and hard chairs hurt--very badly, even with a cushion.
Seeing my cousin's level of disability makes mine seem like a walk in the park--no, a jog in the park--in comparison. It was strange seeing myself looking as if I have high energy compared to someone else my age. She's on a lot of pain medicines, speaks slowly from that and pain, has trouble with word retrieval, etc. She's rarely able to leave home at all. Arachnoiditis causes severe nerve pain, and she has tremors when she tries to hold something. She had questions about wheelchair lifts and vans, and we compared a lot of notes about household assistance (from husbands--hers also helps a lot), how our children cope, and how people react. I'm glad that we both will have each other to talk to.
When I visit others, I can't get my scooter in. So often I can't attend or must sit in one spot, or I must build in some real "suffer time" for recovery later from being unable to use the scooter or sit comfortably. And yet some people's perceptions of me can be that I'm not very disabled (because they've never seen me using a wheelchair or scooter), or that I'm lazy (not getting up = "giving in," "not fighting it"). Very close relatives--my husband's sister and grandmother, friends we've known for many years whom we see regularly (well, I'm absent a lot) have never seen me use it. Since I can get around my own home well, it really bothered me that my mother-in-law refused to have my own son's (!) and my husband's birthdays here, even though we have the space. I run into this kind of thing a lot. (We can get the smaller scooter in but I have trouble sitting in it for long--transferring in and out multiple times also increases pain unendurably).
Here's an argument for universal design--everywhere. Disability cuts us off from family and friends first. Often I can go to public places for a while but can't go to others' homes because the pain of getting around without the scooter is too much. I can't go out to the pool area where everyone else is, or up to a game room, etc. I can't carry portable ramps in dozens of possible configurations--and thresholds are still a problem. Even when I walk to get in, big steps or a series of steps are a huge problem. I can't gather in the kitchen with everyone else because I can't stand up long and hard chairs hurt--very badly, even with a cushion.
Seeing my cousin's level of disability makes mine seem like a walk in the park--no, a jog in the park--in comparison. It was strange seeing myself looking as if I have high energy compared to someone else my age. She's on a lot of pain medicines, speaks slowly from that and pain, has trouble with word retrieval, etc. She's rarely able to leave home at all. Arachnoiditis causes severe nerve pain, and she has tremors when she tries to hold something. She had questions about wheelchair lifts and vans, and we compared a lot of notes about household assistance (from husbands--hers also helps a lot), how our children cope, and how people react. I'm glad that we both will have each other to talk to.
Friday, September 25, 2009
Staying Gluten Free
Gluten-free is not as difficult as one would think--definitely not as difficult as ten years ago, when I was first diagnosed with wheat allergy and threw in the towel pretty quickly. Dealing with the symptoms from eating wheat was easier than dealing with lack of alternate products; and what there was tasted "dog foody." You do get used to it quickly, definitely within thirty days, though I advise stocking up on some items if you don't have a specialty grocery close. Even WalMart now carries gluten free pasta at a lower price than specialty stores, several gluten free cereals, and the new Betty Crocker mixes. Another local grocery carries Bob's Red Mill flour and mixes. Items such as pancakes and muffins can be made in advance and frozen to save time. I do miss the occasional bagel--the alternates I tried were awful, but most everything else is great. Some products are far better. Some great finds: Mary's "Gone" Crackers, Glutino breakfast bars and plain and vegetable crackers (great with hummus or cheese), Erewhon rice cereal, Betty Crocker cake mix for birthday or company. Bob's Red Mill website carries a lot of recipes, and you can also use standard recipes, substituting the GF flour and add xanthum gum (sold in a package) for binding. The pizza crust we made was superb. I don't eat rolls/breads except sandwich bread for sandwiches or toast--I miss eating these occasionally but had mostly been skipping these anyway to save calories. We have made muffins--pumpkin and blueberry. We once made cornbread, but I need to find another recipe. Oh, yeah--Tasty Bites Indian Food for something fast. The tikka masala is pretty good, and GF.
I have remained gluten-free for three months, with two small exceptions. I accidentally ingested some in artificial crab meat and was sick in thirty minutes; my daughter ate the same food but was not sick. I researched the ingredients on the web (the ingredients for artificial crab meat are not listed!), and yep, wheat. Then a week and a half ago, frustrated by time constraints, sharing the van, and trying to visit my grandfather before picking up my son for a long appointment and convincing myself this was just a big bother, I ate some regular pasta and a roll. Result: major psoriasis outbreak, nail pitting, a little more hair loss. I am allergic to wheat but ate it anyway for many years (just 2 on a 4 point scale, mild). Regardless of whether gluten causes my health problems, wheat clearly contributes. To go wheat free, one must use gluten free products. So I'm staying on this diet. I wish I had known this years ago as a teen with self esteem issues (and severe itching) from psoriasis.
I don't regret my "experiment," as now I know for sure. Some of my GI issues have been a lot better too--whether that relief is from eliminating wheat or gluten, I don't know, but either way, I'm glad to have some relief in that regard.
With careful food shopping, we've been saving so much on other foods that I don't mind the extra we're spending here. My arthritis pain has often been better--to the point that I haven't scheduled an appointment with the wheelchair seating specialist because my scooter is doing its job again! I won't hesitate if I get another bad flare at this point (as in May and June), but for now...I will keep my fingers crossed. I can't sit in it all day, but I am not in agony just from going to one of the kids' activities and back home. My thoracic spine is killing me, but that is my own fault for moving improperly--well, it wasn't intentional to hurt myself, but hopefully this will go away soon.
Good news: I was told after my son's recent OT evaluation that he's now average or above average in most motor skills, so does not need OT now. That is good since I was worried about him missing school or his grades dropping from being too tired from doing one more thing a few times a week. He does need some downtime! He does not need to see the autism specialist for another year.
Bird's got an after-school orchestra party and her first volleyball scrimmage tonight. 3 of the girls she already knows, and I think this team will work much better! It wasn't just the disability issues with the other team--some of the players would chide others for missing a volley (causing my daughter to lose concentration and not do as well) and one repeatedly argued with the ref!--a 10-year-old, almost causing us to have to forfeit a game. I think we've got a sweet bunch.
I've actually been spending less time at my grandparents' this week--they're having so many people drop by that they're worn out from the company. I think my grandmother feels she needs to entertain people, while she really needs to go nap. She normally needs to, and she's been under a lot of stress. We've sent over several meals and kept visits short. My grandfather actually eats pretty good meals at dinner and we've been trying to make some of the things he really likes--salmon, hamburgers, spaghetti. Not culinary masterpieces, but food he enjoys and has asked about.
I have remained gluten-free for three months, with two small exceptions. I accidentally ingested some in artificial crab meat and was sick in thirty minutes; my daughter ate the same food but was not sick. I researched the ingredients on the web (the ingredients for artificial crab meat are not listed!), and yep, wheat. Then a week and a half ago, frustrated by time constraints, sharing the van, and trying to visit my grandfather before picking up my son for a long appointment and convincing myself this was just a big bother, I ate some regular pasta and a roll. Result: major psoriasis outbreak, nail pitting, a little more hair loss. I am allergic to wheat but ate it anyway for many years (just 2 on a 4 point scale, mild). Regardless of whether gluten causes my health problems, wheat clearly contributes. To go wheat free, one must use gluten free products. So I'm staying on this diet. I wish I had known this years ago as a teen with self esteem issues (and severe itching) from psoriasis.
I don't regret my "experiment," as now I know for sure. Some of my GI issues have been a lot better too--whether that relief is from eliminating wheat or gluten, I don't know, but either way, I'm glad to have some relief in that regard.
With careful food shopping, we've been saving so much on other foods that I don't mind the extra we're spending here. My arthritis pain has often been better--to the point that I haven't scheduled an appointment with the wheelchair seating specialist because my scooter is doing its job again! I won't hesitate if I get another bad flare at this point (as in May and June), but for now...I will keep my fingers crossed. I can't sit in it all day, but I am not in agony just from going to one of the kids' activities and back home. My thoracic spine is killing me, but that is my own fault for moving improperly--well, it wasn't intentional to hurt myself, but hopefully this will go away soon.
Good news: I was told after my son's recent OT evaluation that he's now average or above average in most motor skills, so does not need OT now. That is good since I was worried about him missing school or his grades dropping from being too tired from doing one more thing a few times a week. He does need some downtime! He does not need to see the autism specialist for another year.
Bird's got an after-school orchestra party and her first volleyball scrimmage tonight. 3 of the girls she already knows, and I think this team will work much better! It wasn't just the disability issues with the other team--some of the players would chide others for missing a volley (causing my daughter to lose concentration and not do as well) and one repeatedly argued with the ref!--a 10-year-old, almost causing us to have to forfeit a game. I think we've got a sweet bunch.
I've actually been spending less time at my grandparents' this week--they're having so many people drop by that they're worn out from the company. I think my grandmother feels she needs to entertain people, while she really needs to go nap. She normally needs to, and she's been under a lot of stress. We've sent over several meals and kept visits short. My grandfather actually eats pretty good meals at dinner and we've been trying to make some of the things he really likes--salmon, hamburgers, spaghetti. Not culinary masterpieces, but food he enjoys and has asked about.
Monday, September 21, 2009
"Help Crippled Children" ??
On Saturday my family escaped to a large local craft festival for a few hours before visiting my husband's grandmother and making two dinners simultaneously, one to send over to my grandparents, aunt, uncle, and cousin, and one for us and my parents and sister here. After navigating some sidewalks with some terrifyingly steep dropoffs and finally finding a panic-inducing series of steep ramps to descend into the square, we found all kinds of lovely crafts and handmade items. We can't make purchases right now, but we could feast our eyes and enjoy being out after some recent bad weather and too much time in--there were dichronic glass necklaces, candles that smelled like sugar cookies or chocolate, some nice silk cosmetic bags for travel, reversible bags and aprons, beautiful scarves--any of which would make wonderful gifts. We did get some kettle corn for the kids. It was good to be out for a while--not so long I put myself in bad pain, though I definitely had to use the scooter in the kitchen later. I keep hoping to run into someone from a very local assistance dog organization (I think they're housed downtown there) but haven't yet.
As we made our way through the booths, we saw a couple of Shriners with buckets collecting money. I was shocked that the sign said, "Help Crippled Children." I'm pretty sure the shock registered on my face. The kids asked questions, so I explained. Later, at multiple intersections, we saw other Shriners collecting--these buckets read "Help Crippled and Burned Children." I have to say when I was a patient, I never considered myself crippled (even when I used a wheelchair, walker, crutches, and cane over time) and am not sure how my son feels if/when he makes the connection between this group and the hospital he will go to for evaluation. I have referred to myself jokingly an adult as a "crip" or "angry gimp." But honestly, I feel confused by but don't really like the term "crippled" in this particular context. It does make it more clear what kind of disabilities they treat (orthopedic). But do other people then pick it up? I just felt a stab of pain about it. To me they are trying to evoke pity with their particular use of the term. Does using "crippled" rather than "disabled" net them more funds?
As a friend who is doing a nursing rotation at the local Shriner's hospital pointed out, not only is the medical care free, but insurance does not dictate that patients must leave before they are ready, turn down necessary procedures, and nurses don't have to over-monitor medical supplies. All of these things are good. Co-pays and coinsurance even for those who have insurance can be financially devastating for people whose children require multiple surgeries or frequent casting or bracing, as can the loss of one parent's income to caregiving, home and vehicle modifications, and costs that insurance will not pay for at all (minor to major DME and personalized equipment needs, nursing care, etc.). Yet a part of me as a child felt "weird" about Shriner's versus my orthopedic visits, like I and others were set apart or marked in some way as different, pitiable or wrong. Perhaps my impression now is tinged by my pre-teen resistance to other people messing with my body, not feeling I had control over what happened within my body or what happened to it.
The work they do is good, and maybe I'm overthinking this, but I just didn't like it as a child when people would treat me with pity rather than as an equal--I don't like it now, either.
As we made our way through the booths, we saw a couple of Shriners with buckets collecting money. I was shocked that the sign said, "Help Crippled Children." I'm pretty sure the shock registered on my face. The kids asked questions, so I explained. Later, at multiple intersections, we saw other Shriners collecting--these buckets read "Help Crippled and Burned Children." I have to say when I was a patient, I never considered myself crippled (even when I used a wheelchair, walker, crutches, and cane over time) and am not sure how my son feels if/when he makes the connection between this group and the hospital he will go to for evaluation. I have referred to myself jokingly an adult as a "crip" or "angry gimp." But honestly, I feel confused by but don't really like the term "crippled" in this particular context. It does make it more clear what kind of disabilities they treat (orthopedic). But do other people then pick it up? I just felt a stab of pain about it. To me they are trying to evoke pity with their particular use of the term. Does using "crippled" rather than "disabled" net them more funds?
As a friend who is doing a nursing rotation at the local Shriner's hospital pointed out, not only is the medical care free, but insurance does not dictate that patients must leave before they are ready, turn down necessary procedures, and nurses don't have to over-monitor medical supplies. All of these things are good. Co-pays and coinsurance even for those who have insurance can be financially devastating for people whose children require multiple surgeries or frequent casting or bracing, as can the loss of one parent's income to caregiving, home and vehicle modifications, and costs that insurance will not pay for at all (minor to major DME and personalized equipment needs, nursing care, etc.). Yet a part of me as a child felt "weird" about Shriner's versus my orthopedic visits, like I and others were set apart or marked in some way as different, pitiable or wrong. Perhaps my impression now is tinged by my pre-teen resistance to other people messing with my body, not feeling I had control over what happened within my body or what happened to it.
The work they do is good, and maybe I'm overthinking this, but I just didn't like it as a child when people would treat me with pity rather than as an equal--I don't like it now, either.
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